Jude; The diary of a baby and a stroke

Nashville

2012-01-27T10:34:00.000-06:00

Well Em and I are in Nashville currently waiting on a room at the hotel we are staying at. We caught the first flight out of DFW this morning. I used to be so afraid to fly. I think after what happened to Jude I changed my views on a lot of the world. I decided to try and put a lot of my fears aside and just enjoy life. I am thankful I have because I am able to spend valuable time with Emily that I would have enjoyed before. I still get a bit jittery boarding the flight, I still do the cross and say a little prayer. However, I no longer panic and I no longer fear planes themselves. I have actually really educated myself on them and how safe they really are.

We are here for a pageant. Emily competes in Interview and natural beauty tonight. Tonight she competes in regular beauty, swimwear, casualwear, and theme wear. Then we relax and enjoy our trip. On Sunday she is making a speech in regards to her charity to a ballroom of people. She is prepared and should do well. It will give her the opporunity to spread information in regards to helping others.

Jude is with his daddy and I will be waiting on my little video of him going to sleep tonight. I will end today by asking prayers for a family member that needs it. Thanks!

An anxiety explanation to Emily

2012-01-25T10:37:00.000-06:00

So I mentioned that things have been overly stressful at work lately...and I wasn't kidding. Anyway, yesterday I realized it's taking a toll on me physically and emotionally. All day at work yesterday I kept getting left arm pain and chest pains.........so I convinced myself it was NOT a heart attack (lol). At the time though I was pretty sure I was dying and then talked myself down off the heart attack cliff. The pain was in the back of the arm in a solitary position......... so it was just anxiety. I have never really struggled with anxiety except when I drive (due to my car wreck). Well Anxiety found me front and center at work. Anyway, when I got home we had a great relaxful evening until..........Insert dramatic drumming noise. Emily started asking for money for school for a T shirt she needs. This week alone she needed supplies for a sewing class, supplies for her link leaders, supplies for a donation basket...........and I began to hyperventilate. Emily insisted she HAD to have the money Friday and I explained to her I get paid on Tuesday, but that was unacceptable. I explained the extra money we had was set aside for the trip this weekend, but I would have it to her ASAP on Tuesday. Again...not acceptable. I then cried.............WHY?? Why on Earth would I cry over that? So our conversation went something like this.

Em: Mom I think you are depressed
Me: Why?
Em: because you cried over that song, cry about Jude, and you cried over a flat tire Monday
Me: Em when you get old you will know why I cried over a flat tire
Me: Em there is a difference between being very stressed and depression........do you know the difference?
Em: No
Me: Hi anxiety or stress can cause sudden outbursts of crying or yelling. It can make you feel overwhelmed or like you cannot breath sometimes....depression.......generally is show by a lack of interest in anything. Feeling like you cannot work, you don't want to get ready, you don't take care of yourself, etc.
Em: Oh like Mikey after Jude got diagnosed
Mike: (spins around looking like a deer in headlights) HUH?
ME: YES, Exactly! He didn't shave, didn't want to leave the house...
Mike: really? (looking like he just got ran over)
Me: He kinda smelled
Em: (now cracking up)
Me: never cut his toenails
Mike: MUST we go there?
Em: (giggling)
Me: Em......it's normal for adults to sometimes have issues with stress, sadness, or other issues. Especially after Jude's situation or my current issues at work ......... well it's just normal. As an adult you just have to vocalize every now and then and get it all out. If you keep it in then it can create serious issues. So just know if I cry, yell, or seem sad it has nothing to do with you because the best times I have are my times with you!

She then marched happily up to bed.

Mike's scare, Jude's gift, and Hanging on

2012-01-24T15:49:00.000-06:00

Mike and I try to spend lunch together once a week and today was our weekly visit. We chat about work, home, and play Scramble on our Iphones against each other.........yes we are THAT couple. Anyway, it's nice to spend some time together. Well today at our lunch date Mike said he when he got up this morning he went to check on Jude. He said he stopped suddenly in the doorway because Jude looked "lifeless" and when he touched Jude's hand it was ice cold. I said, "Oh babe he was just sleeping soundly". Mike agreed with me, but you could tell he was a bit shaken up. Quietly he said, "It happens you know". I replied, "Yes I do know...it happened to our friend (name withheld) but there is no reason to worry over something that potentially will never happen". Jude is with us and he is doing the best he has done in a long time! He is happy, healthy, and making progress........so I will take it!

Having Jude has always put things in life in perspective. When we think we are at the end of our rope or just cannot take anymore.........remember that you can. Life always has a way of working out as long as we have our family, friends, and our health. I try to convey to people that life will always work out and it's not as bad as it seems, but sometimes it's hard to explain it in the right way.

Another hard part of life me is watching some parents of special needs kids pushing their little ones so hard. New drugs, new routines, new doctors, more appointments, etc.........sometimes it's okay to just let life happen. To give our kids the best you can and spend time with your child. I mentioned once that a doctor told Mike........"Many times with children like Jude it's the parents that cause their untimely demise by searching for normal". I think that was a really profound statement. So we achieved finding the right combination of seizure medications, the right diet, and found a great pediatrician we can follow up with. Jude has weekly therapy sessions, but his doctor visits are now limited to "as needed" and every three month check ups. Maybe I am wrong to not search out the greatest and newest technological advances for Jude, but he is happy. For me........it's just about him being healthy, happy, and loved.

nap time!

2012-01-22T15:42:00.000-06:00

I think it's nap Sunday! I haven't had a nap in forever and I think one is in my future.

Jude is with Alan practicing his two words "Hi" and "Up".

We did our errands this morning and now we are all taking it easy. I hope everyone had a good weekend. I would also like to thank those that donated items for the friend I mentioned. It means a lot.

modeling, the GI, and a little help.

2012-01-21T19:02:00.000-06:00

Today I took Emily to a modeling/commercial audition at her request. I debated taking her all week and it was Mike who finally pulled me aside and said "SHE wants this". So I packed Em in the car and we drove to Dallas for the audition. Emily waited for almost two hours to be seen in a room full off potentials. She was nervous, but I think the pageants helped her stay more calm than I would ever be. She was called back and was asked to read a commercial. She then turned over her pictures and had a conversation. She was quickly dismissed and Emily seemed concerned that her interview was so short. I assured her that the reason could be that the lady interviewing her may already like her. Sure enough at about 6:45 she received a call back for tomorrow. So tonight I sat Emily down and explained to her that if this is truly her passion she is going to have to ask her dad and his family for some help. With my job I am going to have to have help getting her to functions. She is now bouncing off my walls!

As a reminder to those that know me I am working on collecting items for a very good friend who is in need. Many times in life people face desperate times, but they don't reach out. When we found out about Jude and Mike had to quit his job I had friends walk in my house with hands full of clothes, diapers, toys, and more. So I have vowed to pay it forward throughout the remainder of my life. We have held many drives for those in need and I know it gets on people's nerves, but if you could spare a little to help someone we would really appreciate it. I am collecting diapers, formula, wipes, and household items. I am also collecting grocery gift cards. Sometimes families in need just need to stay anonymous, but know it will really touch their hearts.

Jude is well. He went to his GI doctor on Friday. We were told that Jude has lost a little weight, but that he looks "the best he has seen him". He seemed very impressed and even said Jude does NOT need a nutritionist. He explained that any increasing off foods will be done through his office. It was nice to hear that Jude is doing so well. I am hoping 2012 will be a great year.

A seizure

2012-01-19T16:28:00.000-06:00

This was written by Sharlie Lee. I had to share. Even though Jude has a host of other issues and his seizures are a bit different I can relate.

A Mother's Perspective of a Seizure........

It’s putting your nose under his cheek so that he can feel your presence to know that you are there, while his tears are falling on your face.

It’s telling your son, “It’s OK baby”, when you don’t know if it will ever be ok.

It’s singing “Jesus loves me” or “Peace Like A River”, while... praying to God that they will never come back.

It’s having to gently sweep your son’s face to comfort him so that he can not be scared to go to sleep.

It’s watching him struggle to breath and gasp for air, while you watch helpless.

It’s praying to God that he will wake up the next morning so that you can spend more time with him.

It’s sitting up at night, getting your thoughts together and typing your feelings, so that you can express a mother’s love.

It’s hearing him scream, because he is terrified that one will come back and control his body.

It’s knowing that he is dealing with something that you can not control with money, love, or power.

It’s holding your head and hands up because it’s out of your control and you give it to God to conquer.

It’s hating to say the “S” word, when the word “hate” is not strong enough to tell how much pain they cause.

It’s testing a Mom’s Faith, when that is all you have left.

It’s crying your eyes out, when no one is looking because you are suppose to be the “strong one”.

It’s being grateful for each day that you have and appreciative of the small things that God gives to you.

It’s knowing in the end, there will be a time that God will be in control and these horrible seizures will not be.

A movie with Jude and a cry fest

2012-01-18T10:27:00.001-06:00

It obviously been an emotional week. I think my husband got that last night because he was very loving when I got home. We even sat down to watch some happy shows like "Glee" and the movie "Dolphin Tale". Let's just say that my "happy" shows left me with very puffy "cry" eyes today, but that's not a bad thing. They were happy cries and I think I needed them. I did not watch the entire episode of Glee, but the ending was what caught our attention. Mike called me over and rewound the TV so I could watch. There stood "Becky" who has Downs Syndrome waiting to hear if the boy she likes wants to date her. He let her down gently and she asked him if it was because she was to strict or something to that affect. He agreed (with a look of dishonesty) and then Becky turned to walk off. Tears welled up in her eyes as she walked down the hallway and then her inner voice began to play in the perfect British accent of Helen Mirren. Her inner voice said she knew it was because of the downs and her struggles she faces. ARGH, I bawled. Everyone's inner voice is perfect rather we are English, British, disabled, or not. Although, it was the realization that none of us have any idea what goes on in our children's minds. I thought it was very well played on the shows part. I heard there was some cussing from Becky's inner voice, but well........again....maybe that's how she felt at the time. I have been searching for the You Tube clip of this portion of the show, but it's not up yet.

So we then ventured upstairs to watch the movie Dolphin Tale. If you are unaware of this movie I request you look it up. Of course, items of the true story were changed to provide a more dramatic effect for Hollywood. However, the true story itself is pretty amazing. "Winter" is a dolphin that was found washed ashore in Florida tangled in rope and a crab trap. She was rescued, but lost her tail. Amazingly Winter learned to swim without her tail, but it caused serious health problems. They had to find a solution for Winter and they found it in a prosthetic tail. Her story is amazing and behind her story is amazing. Watching the credits role at the end of the movie with a line of children with disabilities and Veterans with missing limbs getting in the pool with Winter.........well made me bawl. Not to mention that every time "Winter" would whistle on the TV Jude would squeal with laughter. I was holding Jude and he would actually look at the TV and then belly laugh. It's like he connected with the Dolphins language. I know Jude reacts to high pitched noises.......but why? Obviously it's neurological, but again........why? So maybe someday I can get Jude close to a Dolphin and see how he reacts....he sure loved the movie. He loved it so much that we let him stay up late to finish it. It's the first movie I ever felt like I was truly "watching" WITH Jude.

By the way.......Winter plays herself in the movie. So thanks Winter for giving me a night to remember with Jude!

Sad

2012-01-17T09:20:00.001-06:00

Have you ever sat back and watched a good friend be destroyed by someone elses inability to care for them properly? You knew that the situation they were in was just not going to have a good outcome regardless of their co-dependent wishes? Have you ever felt like shaking someone really hard and realizing they still wouldn't be able to see what you clearly see? Have you ever realized you will just have to sit back and watch the person you care for travel this painful path before they realize the right path they should be taking? Have you ever wished you could just save someone a lot of heartache and a lot of wasted time?

Make sense? WELL it does to me and I am beyond frustrated today. I am sad...........I feel like someone died. I cannot go into it because it's a private matter, but I can voice my feelings and I am doing so here. It's an emotional and stressful week. I hate it so far.

A puke fest and playoffs

2012-01-14T20:34:00.000-06:00

Jude had a horrible throw up session tonight. I felt just horrible for him and cried along with him. I don't get panicked like I used to when he gets so sick. I was armed with his suction machine, saline, towels, baby wipes, and new clothes. His sickness lasted about an hour. I would suction, he would throw up, I would wipe his mouth, he would get upset, he would struggle to breathe, he would throw up, and it would all start over. He began to throw up blood and I calmed my nerves when I saw it was bright red which meant it was just from the current throwing up. I finally got him calmed down, but his breathing was erratic. I took him in and gave him an Abuterol treatment and I finally saw a little smile creep across his face.

Now he is wired to no end because of the Abuterol. I was trying to hold him to watch the Miss America pageant, but Jude was a squirmy little worm. I finally put him down on his Futon.....and I can promise he is not going to bed any time soon. So I am downstairs watching the Pageant playoffs of the season (Miss America is tonight and Miss USA is in a few weeks where we will be rooting Destiny D on) and Mike is upstairs watching Football playoffs.

I hope everyone has a great weekend.

Therapy and old mama pajama jeans

2012-01-11T21:51:00.000-06:00

Jude's in home therapy is now rolling. We are just waiting on the final approval for payments. He will have physical, occupational, and speech therapy in home. This is in addition to the therapy he receives at school. Keep in mind that children in need of early childhood intervention receives ECI therapy until the age of 3 in TX. They will then be transferred to the public school system through special education. So far Jude's transition has been smooth with the help of his amazing teachers and wonderful nurse. Jude's life is always mimicking his first diagnosis of "wait and see", but we have all gotten a lot better with handling that diagnosis. We all seem to move in a rhythmic fashion when tending to Jude.......even Em. She sat in his bed tonight reading him his "Thomas The Train" musical book and he looked at her in wonder. Jude seems to look at everything with wonder and like a new discovery. I think the idea of finding everything new and exciting each time you see it a miracle.

So tonight when we put Jude down for bed I came out of his room tripping over my long pajama pants. I decided to proclaim something.

Me: HEY family...
Mike: Oh no
Em: I think she wants something
Me: I never want anything...........well okay maybe I do now
Mike: Uh oh
Me: For my birthday....
Mike: It's already time for your birthday??
Me: sigh
Me: I would like a new purse and some pajamas
Mike: Do they make pajurses
Em: (laughing)
Me: No you cannot combine the two requests!!!
Em: I know!!! Pajama Jeans!!! https://www.pajamajeans.com/
Me: really? Pajama jeans?? am I THAT old? I just need some pj's without holes and a purse..okay people?
Mike: I don't know we will have to think about it.

Man they love me!

A smile

2012-01-10T21:16:00.000-06:00

It's not a hidden fact that I work hard during the day. It's something I harp on ........ on a regular basis (lol). So when I get home at night I love cooking for my family and spending time talking to Em, Mike, and Jude.

Tonight I felt terrible when I got home. My throat was hurting and I felt 100% drained. It was probably brought on from the weekend and non-stop action at work. Mike understood that I was just done for the day. So he made us dinner........with an appetizer. I was very impressed.

We then put Jude to bed and without protest Jude sat in his bed laughing in sporadic fashion. I am still sitting in the living room listening to him squeal and giggle. I also watched Emily carefully unwrap a thank you note today from a young teen that received an Emily's Smile Box. I watched a smile creep across her face as she read each word carefully. She sat the note down without a word and just smiled. Emily knew she had made an impact and the teen had made an impact on her in turn.

These are the moments that count and they make me happy.

A weekend update and the pageant

2012-01-09T16:41:00.001-06:00

So Emily and I went away with my friend Fleck for the weekend. Emily competed at "The Barbie pageant" and we had a BLAST! We arrived in Louisiana at the hotel late Friday night. We dropped Emily off for a lesson with her friend and pageant coach in a hotel suite her coach had rented for the lessons she was giving. While Emily completed her lesson, Fleck and I headed down to the very interesting hotel bar to have a drink. Let me just say........this wasn't the most upscale bar. We had some really good laughs and it was a bit like being at the state fair. From the bartender who wanted to put her fake eyelashes on me to the Megadeath DJ who was giving us his best Karaoke rendition of, "Let The Bodies Hit The Floor". I had to text my cousin and inform her that she would be in tears at this location. It was a blast though and the bar was full of odd, but good people! I even got offered the best chocolate cake shot made in Louisiana by a very drunk man.......but I polietley declined.
After Emily's lesson we all settled in for the night. I woke up about four times during the night because I am conditioned to. I wondered how Mikey was handling Jude and the rest of the household. He doesn't seem to hear Jude or anything at night anymore when I am home. I think it's because he knows I am there and I will handle the situation. So I called him in the morning.

Me: Hi honey!
Mike: I am dying......
Me: why?
Mike: Cause you are gone and I am hungry and cold and lonely
Me: Oh my goodness.........well how was your night?
Mike: eh........it was there
Me: uh oh...Jude get up?
Mike: a few times, but not to bad but that *&^#& cat!!!
Me:( giggle)...........you have to put him out BEFORE you go to sleep
Mike: well he must have snuck in on a Bigsby potty mission and I didn't notice
Me: oh dear
Mike: so the cat starts tapping on the blinds about 3am. I was so irritated I even had Bigs sic him! So I finally gave up and let him out and you know what that *&^@&@*@ cat did??
Me: banged on the door to come back inside once he went to the bathroom?
Mike: YESSSSSSSSS
Me: giggle
Mike: it's not funny
Me: it kinda is

So anyway. Mike found emoticons on this Iphone and I got random sweet and funny texts throughout the weekend. The first one had a picture of a cat face with a tiny gun pointed at it. I cracked up.

Next I sent him pictures of Emily in her outfits and he replied "wow she is beautiful". What a nice step dad.

So then I told him I was really missing my Jude and he sent me this and I could just hear Jude saying "Hiiiiiiiiiiiiiiiiiiiiiii"

So before I went to bed that night I received another text from Mike with the little emoticon pictures...
"I (heart) you so much it makes me (smiley face) hurry and come (house) b4 I (skull face). Translated: I love you so much it makes me smile hurry and come home before I die. hahaha. He then sent " (cat face) (gun next to cat) (bath tub) (beer) (martini) (zzzz). Translated: I killed the cat then took a bath had a beer and a drink and am now going to bed. He is nuts! He then knew that Emily's crowning ceremonies were the next day at ten. He kept texting wondering how she had faired at the pageant which I thought was very thoughtful. He really is a romantic good guy!

I am happy to say Emily did VERY well. She received "mini supreme queen" which is an amazing title and she received top 15 at the pageant. They announced the top 15 girls of the entire pageant by sending their reigning royalty on stage carrying signs that were slowly turned around featuring the girls pictures. I think Emily was so excited to receive one of those posters that she didn't care what else she got.

She looks kinda happy here huh?

After the pageant Emily requested Chicken and Dumplings (her favorite) from "Crackle Barrel". I always remind her it's "Cracker Barrel". Anyway, we had a VERY nice weekend away. We turn around and go to another pageant at the end of January, but we don't have anymore planned after that for awhile. I am so glad I have such wonderful friends and family that do not judge and just support Em in what she loves. Pageants don't always get a good wrap but a beautiful girl with a wonderful heart knows what's important and life and what's just for fun.

Here is another picture of our amazing weekend. I am so glad our buddy Fleck went with us. She is such a GOOD friend!!!

It was a much needed relaxing weekend. I was so happy to be home with my family and my Jude. He was so excited to see me and I gave him big hugs!!! He was grinning from ear to ear.

It's the freakin weekend

2012-01-06T08:49:00.000-06:00

This has got to be the hardest week at work I have ever had and I am not exaggerating. Jude did not sleep well Thursday morning after midnight and then working the job of two Thursday during the day just exhausting. I stood in Wendy's last night waiting on an order of chili and the ground felt a little shakey . The good news is it's Friday and almost the weekend....YAY!!!! Em has a pageant this weekend so we are hitting the road to Louisiana. She is so excited to spend some time together. I am too, but I am also looking forward to some sleep!

I actually slept so hard last night. Jude got up three times, but that's a really good night. So I was rested and bouncing around the house this morning! Jude woke up at 5am just cracking up. He literally laughed in his bed for an hour so I laid there listening to him through the baby monitor smiling. I even went and peeked in on him. I think he could feel my presence because he turned my direction and smiled really big. He is such a character sometimes. I guess he was having a really good dream and woke up thinking about it.

I do have to brag on him for a minute. When I got home from work yesterday Mike had Jude sitting in his tomato seat while he finished his G button feed. We like to have him sit up if possible because it lowers the risk of Jude vomiting. Well Jude isn't fond of the seat and he kept saying "uhhhhhhhhhhhhhhhhhhh!". Mike would respond "No Up Jude." Jude would push himself forward in his straps and repeat himself. He repeated himself until he got what he wanted. He was determined to get out of that chair and with persistence he did.

My dream

2012-01-04T10:26:00.000-06:00

I had a dream that I was telling Mike that Jude knows what his hand is. I kept trying to convince Mike that Jude knows more than we think he does. So I had turned Jude on to his tummy and asked him to show his dad where his hand was. Suddenly Jude shook his hand back and forth like he was cleaning something. I exclaimed, "See!!! He listens he knows". Then Emily came into the room and I asked Jude to repeat what he had done and he complied. I woke up very happy and woke Mike up to tell him. I am not sure he was very happy with me because it was 2am, but I had to share!

Thanks for the suggestions on the diapers. Jude is over 40 pounds and the size 6 diapers just do not fit him anymore. We will be alright. Our diaper fairy is truly amazing. She is such a blessing.

Emily and I are going to Louisiana this weekend. She seems so excited. I had a commission check that was messed up so I was going to cancel, but she wants time alone with me so bad that I made it work. I am looking forward to the weekend with her.

Moving along and questions on trachs

2012-01-03T15:52:00.000-06:00

I hope everyone had a good New Years. We have been incredibly busy at work again, but I am taking a quick break. If the phone isn't ringing then my email is lighting up, whew wee.

So we have a lot of items going on regarding Jude right now. We are getting the in home therapy finalized for his Physical therapy, Occupational therapy, and Speech therapy. They are just waiting for the approval to come through in regards to payment. He also had blood work done so he can go visit his neurologist to make sure his medication levels are normal. We also talked to someone today in regards to getting a mini van that is already converted. We are not in a huge hurry and they are looking around. There are a few questions I have for our seasoned special needs moms. I have been told by more than one person and medical professional that they are impressed Jude does not have a trach. They seem to add on the word "yet" in these sentences. Is a trach a normal and expected item as kids with aspiration issues grow older? I sure hope not! Poor Jude did throw up several times this weekend. Once it was so bad the nurse stayed after hours to make sure his lungs sounded clear.

Also, I have talked about traveling with Jude on my blog before. It's very difficult and Jude seems uncomfortable outside his house, yet I have another child to think about too. So it's a struggle. How have you seasoned moms handled family vacations or have you? Please share.

Also, Jude has officially grown out of any diaper I can find in the store.....yet still no approval. Luckily our sweet diaper fairy Gena keeps dropping packages at my door. I owe her a ton! I did call the medical supply company and they are suppose to get me a price on the youth smalls. COME on Pampers..........let's get a regular line going here for those that cannot potty train.

Again, have a blessed 2012. Let's hope for great changes for the better.

The Stars are bright......they shine tonight....

2011-12-31T21:04:00.000-06:00

Today we had a birthday party to go to for little Sofia who was turning four. On our way to her house we stopped off to get some Emily's Smile Box supplies for our friends granddaughter that was in the car wreck I mentioned in my prior blog. While we were choosing items Emily brought me some glow in the dark stick on stars and asked me to buy them separate from her charity supplies. I complied and didn't ask any questions. Once we got home Emily took off to Jude's room and I didn't say a word. I knew what she was doing and I didn't want to spoil the positive energy. I heard the chair scooting across his room and Emily worked diligently for about an hour. Soon Emily reappeared and asked me to come look at Jude's ceiling and it looked like this.

Now his room it sprinkled with glow in the dark stars. The cutest part was she went up to Jude in her high pitched "Jude" voice and told him all about her gift to him. It was a good start to the New Year and a reminder that we should give of ourselves without question. It warmed my heart.

Jude seemed to really like her stars. He stared at them as we laid him down tonight.

Jude, busy, a baby, and tragedies.

2011-12-29T22:51:00.000-06:00

Today has been an emotional day. I am not sure if my emotion was caused by actual events, sleep deprivation, or stress. I am assuming it's from actual events. My wonderful great friend Jen is now on maternity leave at work. She had a bouncing beautiful 9lb 3 oz baby girl on Friday. She is healthy in every way and I am so thankful for her easy delivery.

With that being said work has been a beast. I expected it to be of such since I knew I would be picking up her shift with the help of her mom and our fill in Blake. I have done this before..........although I quickly realized I covered two jobs.........when I was much younger (insert laughs). So on Tuesday our amazing part time person Susie (who happens to be Jen's mom) let out a sigh at about 3pm and said, "I think I am fading". What a great response to a stressful situation. Work is actually great when it's super busy so in the end it all worked out. Although, I still love her response and I think I will use it in the future. "I am fading".

When I got to work today I expected a fury of issues to arise and our day would mimic the one before it. However, our morning was a duplicate but the afternoon was rather slow. I was able to get caught up on all my paperwork and had plenty of time to relax. However I had encountered sad news when I walked in the door today. An old friend had a granddaughter that was in a major accident. She was burned as she tried to rescue a friend from burning wreckage. She is very young and watched her best friend pass away. My heart BROKE for her. After that I heard that my cousins husbands dad was losing a portion of his leg. So this day was laced with a bit of sad information. I pray for all those that are encountering tragic situations. It's a reminder to me that life never goes as you plan it to.

I know I have posted some blogs that suggested I was struggling. I think I still deal with what happened to Jude and I still feel the heavy burden of our entire family's finances on my shoulders. I know this will change, but it's still very.............well heavy. I also know struggle because I know that I need a job that provides retirement. Let me preface this with letting people know that I understand I should have a retirement program in force (Easier sad than done when you need your entire check). Anyway, I am looking at my life in general. Man I am thankful I have a good job that understands I must leave when Jude is sick, however I know I must look around in the future. Eventually my boss will retire and I will need a different job. I want to go into claims when he retires. I have an adjuster license and VAST experience in insurance. I want to help put people's lives back together after a tragedy. I love helping people and the epitome of helping others would be to ease their pain in such a desperate situation as a total loss. To even think about my boss retiring at some point and leaving my job after so many years........sends me into a panic attack. To leave at all......makes me hyperventilate (grabbing a paper bag).

So let's turn our thoughts to Jude which is the basis of my blog. Jude is doing very well. Tonight I grabbed Emily's IPAD and I started the "monster" app that I have referenced before. The monster mimics your voice, pops balloons, and more. Jude LOVES "Leonard" the monster. He even hit the buttons several times to make the monster "talk". Jude also laughed hysterically when I tickled the soft part under his chin. He is such a good boy. I am thankful he has been healthy for so long.

A shave and a haircut 2 cents!

2011-12-26T17:08:00.000-06:00

We had a good Christmas! We feel blessed and loved. I am thrilled that we have our two beautiful children with us, that we have good jobs, and our health.

Today we gave Jude a much needed haircut. We put it off for so long because Jude just hates getting his haircut. I am not sure if it scares him or just bothers him. So Mike, Charlotte, and myself started giving Jude his haircut and Jude was just miserable. He wailed, he cried, and he whined. I felt so horrible for him. Afterwards I kissed and consoled Jude and sweet Charlotte gave him a warm bath. The final results show a clean cut Jude.

Since we were home today we got to talk with Jude's new speech therapist whom I LOVE. It turns out that his speech teacher from school resigned and is now a home health therapist. Jude is her first case and he perked up when he heard her voice. I think he was so happy to see her. She has great goals for Jude in regards to communication and I think she will succeed. Since Emily now has an IPAD she plans to incorporate it into Jude's therapy. He is not advanced enough to use many of the Apps, but she said he will enjoy an app that has a big cute monster that pops balloons and more.

I hope everyone had a safe Christmas.

From Bah Humbug to Merry Christmas.

2011-12-24T10:42:00.000-06:00

Well I was suppose to have a lot of people over to my house for Christmas Eve, but that has fallen apart. For one reason or another people have had to back out. It's not their fault by any means. My cousin was one of the last families that was going to make it, but they had one of their little ones wind up sick last night... poor kiddo. So I have six little ornaments wrapped up on my counter for our ornament exchange, lots of food for everyone, three dozen cookies, and reindeer food that won't get used. I was all sad and Mike pointed out that we have our family here and that's what is important. So this morning I woke up and said...

Me: I had a dream that Em had gone to college and you left me so I really was alone for Christmas
Mike: Did I have a girlfriend?
Me: Yes
Mike: was she good looking?
Me: Yes..but I think you are missing the point
Mike: How old was she?
Me (irritated) I don't know!
Mike: Like 20's? I mean I need to know this stuff hopefully I got one in the 20's.
Me: (laughing)
Mike: Tell me what channel your dream was on so I can finish it
Me: your such a butt

Funny thing is I remember at the end of my dream I flew off to Maui. I was very proud of myself too for buying a ticket and jetting off. I was on the beach in a recliner with a drink in my hand enjoying the sunset...and I woke up happy. Moral of my story is that crap happens that you cannot control so make the best of it!

I wish everyone a Merry Christmas and I sure hope everyone feels better soon! I am so sorry people are sick during the holidays, shoo wee! My dad and his wife are still coming over and we having Tex-Mex tonight since tomorrow everyone will be having ham and turkey.

So we watched "Rise Of The Planet Of The Apes" last night. Of all movies.........Emily cried five times. I tried explaining to her that the Monkey's were CG, but she was still really upset at the animal abuse.

Jude has a bit of a fever today again, but not much. He just seems to get an elevated temp lately and then it will go away. The nurse is keeping track of him today and making sure he is alright.

MERRY CHRISTMAS EVERYONE! All my love!

Reading books and a bit down

2011-12-21T16:12:00.000-06:00

I have been reading Jude books at night lately and he seems to love it. I take great pleasure in sharing something with Jude that I shared with Emily. It was very important to myself and to her her father that Emily was read to every night. When she got older she would then read to us. I thought she was brilliant at age 3 when she read "Brown Bear Brown Bear" to me, but then I realized she had memorized the book. Still not bad for a three year old. Jude watches the book as I turn the pages, he squeals, and talks to me as I say the words aloud. I think he truly enjoys it. I always say there is more going on in his mind than we think there is.

I have been a bit down again for pure selfish reasons. Mike has not gotten promoted at work yet like we anticipated, but I am grateful he has a job. We are crossing our fingers and hoping that Mike gets his lead position with a nice salary and full benefits. We still debate about having another baby. We both want one, but are very scared because of Jude's condition. We are scared because of money and because I would want to have a more flexible schedule. So who knows.........and we are running out of time. So It's a little disheartening to think about letting a dream go I guess. Looking back I guess I should have started my own agency at some point and I would be in a different position today.

It has been SUPER busy at work for the last two weeks. I like it like that, but whew! As of three o'clock today I was officially caught up and it's officially 100% DEAD! Everyone is starting to leave out for the holidays. I am primarily done with my shopping so we just have to sit back and enjoy our family, friends, and good memories. I hope everyone has a good holiday!

What is THAT? (Arrow pointing up)

2011-12-20T17:16:00.000-06:00

Anyone know what that big thing is above this post? lol! I am blogger challenged! Help!

For a quick update...Mikey is sick and therefore that means the world is coming to an end. When Men are sick they are always "dying". So he tossed and turned all night and Jude was up all night. About 5:30am Mike went upstairs and I slept like a bear hibernating. I slept so hard for that hour that I have had a spring in my step most of the day.....go figure!

Our new speech therapist is coming to evaluate Jude the Monday after Christmas. I am thrilled I will be home for the meeting. Also, my friend Jen left today for maternity leave. Many prayers for a safe and fast delivery for her on Thursday. I will primarily be the only licensed agent at work for six week, but I enjoy staying busy. It makes the days quick and keeps me going.

Anyway, any help with the above said "HTTP" issue would be great. Thanks!

Jude

2011-12-19T10:05:00.000-06:00

So Saturday Jude's temp rose again, but I asked our nurse to not give him Motrin and to see how things went. I knew the temp could be fighting a viral infection off. About two hours later the fever broke and so far has not returned. It was so odd!

Jude was very smiley when I left today and I am looking forward to seeing him when I get home.

A fever and a party

2011-12-17T10:37:00.000-06:00

Well Jude has a fever today for some reason. It's not real high, but he is still on the antibiotics so we are wondering what the deal is. He did whine a lot last night while he was sleeping. So we are watching him to see what is going on.

He doesn't seem upset today, but we are watching him. I thought it might be his teeth again, but there aren't red. He actually felt a lot warmer to me than 99.4. I am not sure I trust these under the arm auxiliary temps. I really want to get Jude one those head scan thermometers that the hospital uses.

Anyway, we have my cousins foster baby's first birthday party today. I have really grown to love that little bug and I am looking forward to his party.

My hubby loves me!

2011-12-12T14:56:00.000-06:00

So this weekend I realized something. My husband loves me.............I mean he really loves me. I look in the mirror and see my reflection now and just feel terrible. The years and the stress have aged me. I still try to take my walks and would love to be a size 6 again, but I feel like I am walking against a hurricane. There is no time, there is no money, it's just well... bah humbug..lol. Despite my appearance I realized with a warm fuzzy feeling inside that he loves me for who I am. He still walks by me as I am cooking and hugs me. He still wakes up in the middle of the night and says, "You are the best mom and wife anyone could have". He still says "I am going to marry you someday". He may have his moments, but that guy loves me. I am lucky! Mike is my soul mate and just such a great guy. I love how he uses "Jude's" voice to cuss about toys and how Jude wants to be ready for the "zombie's" in 2012 (don't ask). It's so wrong, but hilarious. I also love how sweet and gentle he is with Jude and how great he is to Emily. He is the ultimate bad boy turned good with rough edges and I love him!

Here are some pictures from this weekend.

My big over 40 pound boy! You know if we stand him up he comes to my waist...and he is THREE?

The show

2011-12-09T14:58:00.000-06:00

Well I am feeling pretty run down today and my throat is sore. Not sure if Jude gave me his stuff or if I am just exhausted from Emily's play, Jude's being sick, etc. I need to be better by tomorrow because I have a lot to do! Tonight is the last night for Emily's show! She did great in "Yes, Virginia There Is A Santa Claus". She has been playing "Mary-Lou". I know I am her mom, but Emily truly has a natural talent for acting. Jude came with us to watch the show last night and he enjoyed it until everyone started clapping. He got very scared and Mike had to leave with him. Poor Jude!

Here are some pictures of Em from last night.

A little update on Jude

2011-12-07T10:24:00.000-06:00

Well little Jude had a rough time yesterday so we took him to the after care Cook's ER that just opened near our house. They escorted us right back and we got Jude all checked out. Turns out he has a sinus infection so they sent us on our way with some antibiotics. Once we got home Jude just didn't want to lay down and try to sleep. So I gathered him up and held him for until almost 10:30. He just wanted to be snuggled. He also sounded so strange when he was breathing. He kept making a crackling sound, but since I was told his lungs were clear I didn't worry to much. He then started making this weird parrot sound with his coughing. When Mike came downstairs I suggested the Abuterol. When Mike heard the said Parrot sound he immediately administered the Abuterol. Once that was done Jude settled down and went fast to sleep. He only woke up twice last night and had a smile on his face this morning so that's encouraging.

I am going to check on him throughout the day through Jude's nurse. Hopefully he will feel better today after the antibiotic.

A sick little Jude

2011-12-06T09:01:00.000-06:00

Jude is sick. We escaped it for awhile, but my little man just really isn't feeling well. It started Saturday when Jude got up at 3:18am and didn't go back to sleep until 6am. We knew this was out of the norm for him. Basically the last few nights have continued with him being up and down, cranky, whining, and not himself. I wasn't getting my normal amount of smiles either. In fact, last night his smiles seemed a bit forced. Jude was also very difficult to get to sleep last night. Once he finally went down he woke up about an hour later and I didn't get him back to sleep until 12:30. If he doesn't sleep...his body won't heal. Keep in mind that Jude was doing all this through his sedative. He is now coughing, congested, and just seems achy. We keep the rotation of Tylenol and Motrin going........although we ran out of Motrin and I need to grab some on the way home. If anyone is by my house today and can drop off some Children's Motrin I would be grateful. So little Jude is out of school today. I am sure he will miss his teacher.

Charlotte said his throat is very red, green drainage is coming down his throat, no fever this morning (but has had low grade), his lungs sound clear, but his respiratory rate is in the 40's vs his normal 20's. You just never know with Jude?? This could be a simple cold he is battling or it could turn into something serious. Charlotte and I are wondering if this is a reaction to the flu shot? I know systematic reactions to flu generally last 1-2 days and we are going on five days with the symptoms getting worse. Jude got his shot on Thursday 12/1.

You just never know. I hate the unknown. It could be just a common cold.........or it may not. The may not is what always keeps me on my toes. It also keeps me unable to tune out Jude's whimpers at night like Mike tells me to. Since I cannot tune them out I tend to keep Mike awake because I am awake. Our house is a pleasant place to be right now..lol. Anyway, I put a call into the doctor and I am waiting to hear what she says. My guess it's either the flu shot, a cold, or an upper respiratory infection. The later is out major concern because that is the initial stage of possible pneumonia for Jude. Jude has started to vomit again due to his congestion and that seemed to be Charlotte's major concern due to the possible aspiration.

Hopefully he will be well soon and this will all be nothing to worry about.

A doctor visit, an email, and a van

2011-12-01T16:41:00.002-06:00

I took the morning off to get Jude to his check up with his pediatrician. The doctor said she thinks the vein in his neck did warrant a full CBC. She also ordered a liver panel since we know the felbatol can wreak havoc on the liver. She took his blood pressure which was in normal limits. Jude was fairly happy while we were at the office until the took his blood. Normally Jude is a little trooper but the nurse couldn't find his vein and the needle was in his arm. I saw her wiggle the needle around and my body cringed at the thought of the pain. Jude soon became distressed and we knew we were in trouble when his bottom lip poked out. The nurse finished with the blood work and gave Jude his flu shot. This sent him into more tears so I picked up to soothe his hurt. I said "Mommy will rescue you!". Charlotte (our nurse) thought it was funny, but the doctor's nurse must not have thought it was that cute. Sheesh lighten up lady have some coffee or something. So now we just wait on the blood results.

I was contacted yesterday by a young mom who is in a similar situation I was in a few years ago when I was told Jude's brain vents were increased. I struggle sometimes about how candid I should be with these moms. Why do I struggle? Because it's their decision on what to do and how to move forward. I explain them just how amazing Jude is and how much he has done for our lives. I explain what an impact he has made on everyone around him. Although, I also explain just how difficult our life is and Jude's life is. Despite being pro-life people NEED to understand what they are getting into so I ask people to take their blinders off. Our doctor once told us they have an alarming rate of special needs children that are left at hospitals or dropped off. I cannot imagine Jude just laying somewhere with no one to pat him, love on him, or make him smile. This life is HARD, but it would never be that hard for me. I love Jude with all my heart. So put the dreams aside for a moment of the perfect child and make the best decision for you, for the baby, and for your family. Whatever that is don't ever look back with questions. No one imagines having a baby with special needs and you cannot imagine what it's like unless you have lived it. So therefore, I never judge anyone for whatever decision they make. I have been contacted by many moms over the past few years. They have all made various decisions. My heart aches for each one that emails me. I hear the pain in their words and I know how they feel. I know what lies ahead and all I can mutter is what I was told..."the first year is the hardest". It's so true.

Okay back to more positive issues. I really really want to work towards getting Jude this van. The chair is perfect! Not only does it lower to easily put Jude in his chair, but it reclines. Jude needs to recline to keep his head up and it helps with his aspiration issues. Jude coughs uncontrollably at times when he is sitting straight up. We have had to pull over to yank him out of the car seat to help him breathe again. So this is on my list. Dear Santa ~ can you swing it? Just kidding..lol! I was told that it's much safer to keep children and young adults restrained in a seat is possible vs a wheelchair when being transported. I am not sure I can continue to life him, but if I can this is a great solution.

Christmas gifts for the disabled baby (child) that cannot walk or talk

2011-11-29T13:35:00.017-06:00

My friend sent me a link yesterday to a blog about what to get kids that are disabled. I have also been reading some blogs about the same subject on my own. The ideas were great, but not fitting for Jude because of his situation. So therefore, I decided to come up with my own Christmas idea list. I thought it might benefit someone reading it who is looking for the perfect gift for their special child, their special relative, or their special needs friend. Jude cannot grasp, he cannot sit up, and has limited neck control. We are working on these things, but we understand Jude's limitations and we accept him the way he is. So over the years I have found some items that we like. I am sure Jude's nurse could add a great deal to this list, but she is at school with baby Jude. So I am going to try to list some practical everyday items and some non practical items.

Converse tennis shoes. They don't have to be Converse, but they need to have the same look. These are flat sole tennis shoes. When we first started our Journey we thought Jude needed shoes with an arch to help train his foot, but we have since found Converse shoes work best. We are able to take the lining out and fit his AFO's (braces) and foot into the shoe. The need to have the low sides and the shoe strings to tie...not the slip ons.

Two piece Carters PJ's. Again, they don't have to be Carters, but they seem to have great deals and hold up well. I also like Crazy 8 and gymboree pajamas. They need to be two piece because of the G button placement. I love onsie's, footed sleepers, and all those cute one piece pajamas, but they don't work anymore. You must have easy access to the G button in the tummy. Kids with special needs can never have to many pajamas. Jude loves them because they are soft, easy to move in, and warm.

Cd's. Jude loves music!! He will turn towards it. About a year ago I got Jude a personalized Mickey Mouse CD which he loves. Although, it sounds like someone is sneezing every time Mickey says "JUDE". Anyway, he loved it so much that his weekend nurse Allen got him a Barney Cd which Jude laughs to and this Christmas he is getting him an Elmo CD. You can find these Cd's online here: http://mykidsmusic.net/

Jude likes anything that lights up and sparkles. He must take after his mom that loves anything with bling and sparkles. Anyway, we received a sparkle lava lamp and it has been a big hit with Jude. He will stare at the lamp and coo at it. Now take note these lamps get very hot! Put them on an even surface and never leave the baby unattended with them.

A weighted blanket. We have not obtained one of these for Jude yet, but it's on our list. Weighted blankets can calm irritated children and help them sleep. I found this website that you can use for reference. http://themagicblanket.net/. These can come in handy during a storm too.

Switch Toys, light up toys, baby mobiles - Even though Jude cannot grasp he can bat at objects. He has made progress on batting at switch toys or toys with buttons like this school bus.

Also regular baby toys that you find at the store work. However it's better if you can find ones with front facing keys that do not have to attach to a crib. I want to make a line of these because they are easier for special needs children like Jude to hit when laying down or in this tomato seat. This one is perfect if I had something to attach it to.

Everyday essentials. Jude uses a lot of lotion, wipes, socks, Qtips, and baby wash. Yes, I said baby wash. Jude is getting pretty big and it's hard to maneuver him around in a bath tub. Johnsons head to toe baby wash is a must! This will not sting his eyes and you never have to change bottles while washing his body and hair.

A spinning toothbrush. Jude must have his teethies cleaned several times a day. Primarily after he has his breathing treatments as the medication can cause rot. He loves his spinning toothbrush and we sing the "brusha brusha" song while we complete our task. Another idea is to include children's toothpaste with the brush.

The Boppy - Oh God Bless the person that invented the Boppy! Bet they never knew this was a special needs kids DREAM! This helps Jude stay in place in bed, helps him stay sitting up when getting his breathing treatments, and helps him position for therapy. Your child getting bigger? No worries......they have adult Boppy's!

The Child Rite chair. When Jude was a little we discovered the great and powerful Bumbo chair wasn't going to cut it. One of my all time favorite idiotic, you shouldn't have said that, comments came from someone that just couldn't understand that Jude couldn't sit in a bumbo. Anyway, some of our great friends banded together when Jude was little and got him this awesome child rite chair. Jude now has to use his horse collar with it, but it sure was a life saver when he was little. I highly recommend it. http://www.childrite.com

With that being said they also make another great piece of equipment that I am interested in getting Jude to try out. Which is located here: http://www.childrite.com/tumzeeblue-info.html. He may be to big for it now, but it looks great for teaching head control.

Swings - Some special needs kids love swings! Jude is one of those. A platform swing is perfect for kids without a lot of neck control.

Movies - Jude loves to watch TV while he is in his stander. Many special needs children suffer from cortical visual impairment like Jude does. This causes his brain to confuse what he is seeing and therefore he will look away from the object. However, he loves anything red like Clifford the Big Red Dog. These also make great stuffed animals and books.

Last but not least special items from the heart. Jude doesn't reach your standard milestones so receiving "normal" gifts and boxes of hope are treasures. A photo album, a letter from Santa, hand print plates, and more are wonderful. One of my favorite items I have found is listed below. It keeps our special ones close to our hearts always and in our memories forever.

Merry Christmas.

sleepy and bulging vein

2011-11-28T12:31:00.000-06:00

Jude is not sleeping again........and I am not sure why. He is fighting me going to sleep and doesn't stay asleep. I think I counted six times I got up last night or more. I know this takes a toll on his little body. I can also normally handle this, but I think age is catching up to me. Today I felt just exhausted when it was time to get up for work. I have noticed my shoulders hurting, my sides hurting, my heart is fluttering, I get dizzy,etc........I am a bit worried. Nothing a doctor can do.......it's just the affects of not resting well for years. So I worry more about Jude's little body ...........and how not sleeping well affects his health. I am older and stronger, but what about him?
Over the weekend Allan and I noticed a bulging vein in Jude's neck. I am sure it's nothing to worry about, but I am wondering if any other SN moms have noticed this in their kids? I am trying to not think to much of it, but Jude does have issues with his veins when trying to put in an IV. So why would one in his neck be so predominant? Strange the things you worry about in Jude's situation. I had actually noticed it some time back, but chalked it up to an over reactive mom. It seems it's bulging a bit more and now that the nurse noticed I am a bit concerned. So I talked to Mike about it and we decided to have Jude seen by his doctor on Thursday for a check up.

So I do have a cute video to share.

A nice day and a boy that won't sleep

2011-11-26T20:58:00.000-06:00

Jude has had a great day.......well up until about 8pm. He didn't nap all day and since he was up at 7am he is very tired. He was also up several times throughout the night last night. So he has tossed, turned, grunted, and moaned even through the sedative tonight. I sometimes wonder what goes on in his brain and when he needs extra help to ease any pain he might have. I am going to chalk this night up to a little boy acting like a three year old who doesn't want to sleep because he has had a fun filled day.

Jude's futon has really been a life saver. It was so much easier to change him today, feed him, play with him and more. We also used his tomato seat for awhile today and his stander. We worked on saying words today and using his arms to signify what he wants.

I had a good day with Jude.

It's mommy and Jude day!

2011-11-26T09:15:00.002-06:00

It's mommy Jude day! Our nurses are off today, Mike had to work, and Emily is at her cousins. So I got up with Jude and changed his clothes, changed one very stinky diaper, got his medications done, hooked up his feeding tube, did his breathing treatments and now he is on his futon chilling and I am on the couch. We are watching Jack Hanna. Well I am watching and Jude is playing with his musical toy on his bed.

My plan is not to do much today but spend time with Jude. I am just going going to relax and I think we both may stay in our jammies all day.

I had to tell you guys what my husband said the other night. The movie Gone With The Wind is my all time favorite movie along with Wizard Of Oz. In fact...Emily's middle name is Scarlett. So we were chatting about the movie and I mentioned how I always loved Scarlett. Mike said "You are no Scarlett you are a Melanie" I said "Well I guess I am". He replied "Would you really want to be a Scarlett?" I guess I wouldn't, but I never thought if it that way. I always admired her spunk, her beautiful clothes, and the character. In real life I guess she wouldn't have been a very good person huh? So I was watching the movie again this weekend and I smiled a bit when I saw how nice Melly is. I guess I now take his comment as a compliment.

a ring and a turkey day

2011-11-25T16:27:00.001-06:00

We had a great Thanksgiving. Jude seems to be in a good mood and he is happy at home on his Futon.

I have mentioned before that I have not been able to wear my wedding ring because of a reaction to the nickle in the white gold. The band was just to thick and despite all my efforts I just couldn't make it work........trust me I tried every piece of advice anyone could leave me. So we finally decided to sell it and that was a success. I have spent the last year looking at different rings. I have driven my friends and family crazy with pictures. I am on first name basis with several jewelers in the area because I frequented their showcases. Finally today.............on black Friday, which I normally protest.........I found a HECK of a deal and an awesome ring! I am very happy I am married again..lol. I am going to have to get it resized, but it's currently on my finger.

Tonight I am going to my dads house to have another Thanksgiving dinner. Then Monday I plan to drink slim fast ALL week.......

Sweet girl

2011-11-22T09:38:00.000-06:00

Emily left this for me last night. She sure is a sweet girl! She just wanted to say thanks for what I do.

She also gave Jude and I massages last night. This morning I got up and Jude's little socks were on my floor and I remembered that he got a foot massage from his sister.

So last night Emily and I were looking at vacation spots and I remembered something Mike and I said we would do prior to what happened with Jude. We were going to get remarried each year on our anniversary. Next year will be our fifth anniversary and our 40th birthdays...........FORTY? gees. Anyway, I am thinking I may try to plan something and invite whaetver friends and family want to join us. That would be a blast!

a visit and a throw up 1 2 3

2011-11-21T14:50:00.000-06:00

My aunt and grandmother went to visit Jude today while I was at work. Emily called to tell me that Jude had been throwing up since they got to our house. Sometimes Jude just does that. I have spent upwards of an hour with him retching and puking. Although, he was a bit restless last night and couldn't seem to get comfortable. I plan on watching him close to make sure he isn't coming down with anything.

My guess is Jude just got startled, work up with a seizure, and kept throwing up. Like Sands through an hour glass these are the Days Of Our Lives! lol. Poor Jude, I know he hates it so. It's so hard on his little body.

Turkey cards and Tears

2011-11-18T09:26:00.000-06:00

On Wednesday night we had the contractor that converted our dining room into Jude's room over to estimate converting our closet into Jude's bathroom. I wasn't expecting to get choked up, but I did and I am not sure why. We were standing there in my very unorganized closet and I just .........shut down. Mike kept mentioning the type of bath chair Jude needs. The nurse prefers one that rolls into the bathroom and then lays back into a flat surface. I listened to everyone talk about what will be best as Jude grows older and I just stayed quiet. They discussed door widths, rolling surfaces, a sink for his medication, and more. When we moved in Mike and I discussed re-doing our bathroom with a bigger tub and nicer tile, but I guess I never considered my closet would need to become a full wet bathroom for Jude. I want what is best for him, but it's still a little difficult to think about it all sometimes. I was very overwhelmed and I still am. I think I need a few days to decompress and take the remodel in.

When I got home last night Mike was insisting on showing me the video about the teacher that was mistreating his special needs student. I explained to Mike that I really didn't want to see the video because I am well aware of the cruelty in the world. He really wanted me to see it so I took a few minutes to watch the clip until I couldn't take anymore. I am very grateful for Jude's nurse, his teachers, and the school district we live in. Our school district has been amazing to Jude and to Emily. Emily is visiting a performing arts school today and deciding if she wants to audition to try for a scholarship next year. I struggle with this idea because I love her school so much. It will be a family decision based on her visit today.

A reflection of Jude's teacher is shown in Jude's Thanksgiving card to his family. When I opened it last night I was a bit speechless. I didn't cry I just sat and looked at the outline of Jude's tiny hand making the staple Thanksgiving Turkey. I have Emily's when she was tiny and now I have Jude's. I never thought I would have Jude's turkey hand. Our nurse explained what a tedious task it was for Jude's teacher to obtain this artwork. She was insitant she was going to work with Jude to complete the piece and with Jude in smiles she did just that.

Good news and Kim Kardashian

2011-11-17T09:41:00.002-06:00

So the other night we had someone come meet with us from Rachel's Challenge in regards to Emily's charity. They have great ideas in mind and I will share them with you once everything is in place. I don't want to speak out of turn before everything is finalized. I do have to report that while the visitor was in our house Jude was on Mike's tummy and said "Mamba!" clearly. We all looked at each other and said "He just said a word!". We were all very impressed! I have been trying to get Jude to say it again, but he just smiles at me.

So I have been very irritated lately with all the news surrounding Kim Kardashian. It's to the point that my husband has picked up on my total disdain in regards to this woman. We have a nightly tradition of watching TMZ together and laughing at the funny songs they apply to people. Well now he says "Let's go watch TMZ so I can see Kim K!" If I could roll my eyes further into my head they might get stuck. Why am I so annoyed with her? Several reasons. 1. Jealousy! The girl does nothing except get surgery, trainers, and chefs to make her look good and she earns millions. I am still struggling just to get a wheelchair accessible mini van. 2. She thinks we are all IDIOTS and I don't care for anyone that thinks I am stupid. Does she really expect us to believe that her marriage was legit?

If it was legit it makes me even angrier at her! You spend millions upon millions that would help so many people for this over the top ridiculous wedding and the marriage lasts SEVENTY TWO days? Are you freaking KIDDING ME? The death or severe illness of a child is generally the cause of divorce in marriages and my marriage has survived. Granted there has been a lot of yelling matches, but we work through it. With all her millions she couldn't afford some counseling to attempt to make her marriage work? What are you teaching the young teens of America? I believe it teaches them they a quick marriage and quick divorce is alright and that money is more important than love. My thoughts? Stick a sock in it and shut it Kim K. I am tired of hearing from your mouth! Let's find a better role model for our youth!

I have to admit I do like her sister Khloe with her harsh brutal mouth that reminds the rest of her family they still live on EARTH! I remember hearing Khloe once tell her mom Kris that she had used the word label in regards to the sisters five times in a few minutes and that her mom needed to remember the sisters are human. Let's hear more from Khloe and less from Kim.

I wonder what that family would do if they were bankrupt?

A place for Jude

2011-11-15T10:14:00.000-06:00

So we were able to get Jude's futon for the living room this weekend and it's been wonderful! Both nurses said it made things so much easier with Jude. Here is a glimpse at it.

He still will be on the floor during his exercise time on his mat. Other than that he is in his seat, his stander, or on his futon. Jude seemed to like his new place in the house.

Emily's play went very well, but I was exhausted after the week. She did such a great job and I really believe, without sounding like a biased mom, that she has true natural theatrical talent.

Jude's school picture and more

2011-11-09T09:30:00.000-06:00

I studied this picture last night when I saw it pop up on the infamous facebook. I thought of a million things it could say. I don't remember my exact thoughts when it was taken. I know I was looking into my neighbors yard probably watching her child play. I was probably wishing Jude could play with her, but protecting him and loving him for who he is at the same time.

I received Jude's school picture and I think it's pretty good! It's his very first one.

My lil wolf!

2011-11-07T17:32:00.001-06:00

Here is Jude showing off the wolf ears his friend Maddie let him borrow for Halloween. Since he got sick he turned into Woody from Toy Story, but he just had to show you guys!

I love my little guy. I am thankful for every day, every holiday, and every minute I am blessed with him in my life!

The panty escapade.....yep two blogs today!

2011-11-03T13:08:00.002-05:00

So in my limited time on lunch I ran to the store to find an outfit for the prelim pageant I am hosting on Saturday. I felt I needed to look nice and represent my company well. So I wandered around the store picking out multiple items to try on. I went from one side to the other carefully maneuvering through the aisles and clothes. I then took them all back to the dressing room to try on. The attendant simply motioned me back telling me stalls were open without helping me in. A little strange, but I simply went about my business.

Once I got into the room I started trying on clothes and then suddenly something caught my eye. This glaring hot pink object laying on the floor was demanding my attention. I darted my eyes down and thought, "Oh dear God no! Are those MY UNDERWEAR?" Oh yes....yes they were! They were laying there in all their old thong glory just waving at me like a flag. It took a matter of seconds for me to conclude that the said underwear had been stuck to my sweater that I had pulled out of the dryer this morning, but WHERE had they been stuck. Oh I prayed they had been stuck to the inside of the sweater......but I didn't remember feeling anything bulky. Quickly I pushed the undies into my purse and scampered out of the store to hide at Cafe Express. I reached into my purse and texted my friend at work, "Jen, did you see laundry hanging off of me?". She replied "LOL, why?". I thought "Oh no she did see and didn't tell me!!" Luckily she text back that she didn't notice any.....all the while having a great laugh I am sure.

Before I left for lunch I emailed my boss asking him for a day off in January. We are taking Emily to an event and I really needed off. I knew he would be hesitant because Jen will also be out. To my happy surprise he replied that it shouldn't be a problem. Once I divulged my panty escapade to Fleck she replied that my boss probably saw them hanging on my sweater and had to give me the day off because he thought, "that poor girl just needs some help".

Only me people .....only me! Funny thing is they weren't even nice hot pink thongs!

Halloween and progress

2011-11-03T10:12:00.001-05:00

Well Halloween went well and today I am depositing some money into the Emily's Smile Boxes account for the donations we received. Our little haunted cemetery is beginning to grow. This year we had close to 150 kids come by. We did have one horrible incident. We were outside getting stuff together and we would take turns checking on Jude as he finished eating. I guess he bit his finger because he got very upset. I went running in to console him but he made himself throw up.........all over his big bad wolf outfit. So Jude then became Woody from Toy Story. I felt so bad for him.

So believe it or not I had an impromptu garage sale this past weekend at my house. My friend Fleck helped me and I am proud to say that I raised enough money to re-do the loft!!! I moved all the Regal Princess and Emily's Smile box stuff into Jude's old room. I decided not to paint because the colors match her Smile Box theme. Here are some pictures.

We have contractors scheduled to give us bids to convert the bathroom for Jude. It's up in the air on how it will be done right now. We will be going through our closet for sure, but the big questions is converting to a 3/4 bath for Jude or just making ours bigger for his lift and create a roll in shower. I did contact our MDCP case worker who advised me on the funds that are available regarding remodeling (thanks Jocalyn) and the van. The problem is we have to get the van to get it converted. That will take time, but we are working on it.

I did have an unpleasant experience in regards to the wheelchair fitting. I think the physical therapist was a bit thrown off that the medical supply company came up to fit Jude during one of Jude's therapy sessions. I had actually called ahead two weeks before to confirm this would be okay. I also took my lunch hour to come up and sit with them while they were fitting Jude. The medical company explained they thought the physical therapist would be the best person to advise on what type of chair would properly fit Jude. I guess she didn't see it that way. Again, I wish there was a rule book. I work and I have no idea that standard procedures.

Next week is the premier of Emily's play so it will be a very busy week for me. It seems she has volunteered our dog Bigs as To To in the Wizard of Oz........this should be interesting!

Cleaning house and people come through

2011-10-27T21:44:00.001-05:00

So after my post I came home today with a map drawn out of the house and a final plan! I presented it to Mike and well...took charge. The plan is to bring the twin mattress down from our guest room. We are going to get a twin platform bed to put up against the window wall in our living room. We are then going to purchase kids first safety railing to put on the side. It will be perfect and cost efficient! We will be moving the twin from what was suppose to be Jude's room as a baby. We all know that plan got nixed, but that's okay because he has an incredible room now. We are then going to paint the walls in his old room. I told Mike we are selling the dresser, the twin bed frame, all Jude's baby bedding, and the items on the wall. He looked at me and I put my hand on him and said, "It's time to move forward". We have been very attached to Jude's baby items....all of them, because they are material items representing what his life was suppose to be. I explained that it's time to let those go and celebrate what his life IS!

After we move out those items we will be painting that room and it is becoming the Regal Princess/Emily's Smile Boxes headquarters. I am then re-decorating my little loft area........I AM SO EXCITED! I get to decorate :). I am moving our wicker chairs and antique table into the loft. We are either having one large garage sale or selling it all online. Jude will then have his own platform in the living room for his place during the day when he is not in his stander (loaned) or in his tomato seat. We are also getting lots of buckets to organize all his toys and therapy items in the living room. Aw, I can breathe again. I feel so light.

Jude is lucky. I had someone point out that Jude has a lot of equipment and I definitely see that and I am very thankful. So don't get me wrong when I moan and groan it just makes me feel better. Some of it like the nursing was a huge battle, but very worth it. That was a rough two years without any help and I know families care for those with special needs without any help at all. I am not trying to be a hero here and I gladly welcome in our nurse everyday.

I also got some advice on the van that will help. I just needed to find financing and we are making progress. After we get the rooms painted I am calling in for an estimate on the bathroom. I think we can get that done in January. We are moving forward and I am excited! I really feel like everything is falling into place and it's all positive steps from here.

Progress and therapy equipment

2011-10-27T10:14:00.001-05:00

Day 3 of getting healthy and I already feel better! Last night I walked about 3 miles which was great. Today it's chilly in TX and I was happy that Jude got to stay home in his cozy bed today versus going to school. They were having a teacher in service day so the teachers asked if he could attend school tomorrow vs. today. Jude also slept fairly well last night, but he gave me issues with going to bed. It's strange how he goes through cycles, I guess we all do that in life. He truly acts like a toddler at times that doesn't want to go to bed. I was happy he slept and so was my body! I feel pretty rested today. A lot of my rest can be credited to Charlotte who still allows me to sleep for half an hour in the morning before I go to work.

So I am on a mission to make Jude's life and our lives as easy as possible and as beneficial as possible. So I am reaching out to my blogger community who have always been amazing. We are having difficulties getting a wheelchair accessible van. This as you know has been an on going issue. Due to Jude's situation and Mike's jobless situation for two years our financial situation was RUINED! I have a good job, but I couldn't finance an ice cube (hey being honest right? ). It happens! Losing a job or a tragic situation can cause financial devastation. This doesn't mean anyone reading this blog is any better than I am because you can obtain financing. It just means our situation is a bit more difficult. I will find a way to make it work (I always do), but if you know of places that help with financing it would be great to know. After the first of the year I plan to trade my vehicle and obtain a van. Next, we need to get quotes from a reliable contractor that will work with our situation on converting our closet into an accessible bathroom. We discussed various methods of accessible bathrooms....converting our bathroom, converting the half bath, but even Charlotte agrees this is the best route. The half bath is to small and our tub is not conducive to what Jude needs. Therefore, we are converting our closet and building a wall closet in our bedroom. We believe a roll in stand shower with a bath chair will be the best for Jude. Mike's brothers are also very handy so they can help whoever starts this project. We may not be able to follow through until next year, but we need some quotes from a reliable source. Next we are getting the platform "bed" for Jude for our living room. We are basically just discussing models and sizes at this point. Jude would keep his existing safety bed for his room this is just for day time. In addition I have an amazing insurance client at work that owns an upholstery company and she is providing Jude a larger exercise mat for therapy. I also placed more phone calls to various therapy companies to try to find the physical therapy and speech therapy in home. We will then work on the aquatic therapy. I believe the aquatic therapy will have to be with his teacher since I still work. Jude may be limited because of his lack of head control and speech, but we are determined to give him every opportunity we can.

The great news is that when I asked Jude if he wanted mama last night he started rubbing his left cheek. If you remember ... that is the sign I taught him for mom. I am still working with him on a sign that is easy for him to remember for dad. If you touch his chin he opens his mouth and his cannot get his hand to his forehead so I am still working on finding a good sign for dad and sissy.

Anyway, I am a busy bee. I know we will be having a meeting with Jude's teachers within the next few months regarding this progress. I look forward to this meeting.

Where is Emily?

2011-10-26T21:59:00.000-05:00

Tonight I was cleaning up around the kitchen and Mike emerged from playing his new video game (don't get me started on that subject).

Mike: Where is Emily?
Me: She went upstairs to take a bath and I am not sure what she did after that
Mike: Is she feeling okay?
Me: Yes, I think she is just becoming a teenager
Mike: So I don't have her down her hanging on me..(pause)... EMILY I AM STILL COOL YOU KNOW (he yells upstairs)
Me:I know I guess she won't be down here all the time...I giggle

Then we both pause

Me: I miss her
Mike: Me too
Me: We are in BIG trouble...

Emmy soon returned to hang out for awhile, but she then ventured back upstairs. Luckily she is still pretty attached to me and likes to sit in the same seat I do. Not sure what I will do when she goes away to college, but I think we got a very quick glimpse into the future.

getting healthy, an unhappy Jude, and living life!

2011-10-26T15:13:00.000-05:00

Well I promised to always be honest on my blog so here is an admission. Everyone says that I seem so put together to be honest I am not always. I have struggled with everything that happened on a continous basis. I have worked through a lot, but I still have issues. I don't work out like I used to due to time constraints. I have a real hard time falling asleep so I have probably to much wine to remedy that. So I am getting myself back on track. I am determined. I have noticed some health issues and I am getting myself back into my work out routine and eating healthy!!! I am enjoying my life and every part of it......or at least I am going to try. I struggle with life not turning out like I wanted it to. Not being able to stay home, have more kids, etc. It's selfish, but I admit I struggle with it. Time to realize what I should be thankful for and get back on track. Time to do the things we wanted to do and include Jude if possible. I am also determined to find Jude's accesible van soon and get his bathroom converted like we knew we would have to due to his size.

Last night Jude was a little STINKER and I realized that he has bad days too. He was grumpy and would not get settled. He didn't want to be held, put down, or in his bed. He only wanted on his tummy and he couldn't stay there because he was rubbing his chin raw. So somedays even little Jude cannot be satisfied.

I am actually enjoying today even though it sounds like I am down. I have been walking every night. I am now eating healthy again and our future is looking much better. I know that Mike will eventually be promoted at work and I think things will be so much better!

We are also going to ask for Jude's flotation device he needs for aqua therapy for his Christmas. I am truly excited about this and can even take him to my cousins to participate in family day over there. I think Jude could do SO much in the water.

After I wrote my blog I logged into my email and my aunt had sent me the following you tube link. Wow doesn't that put your life into perspective.

The big night away and more

2011-10-25T15:43:00.001-05:00

So this past weekend Mike and I went on our overnight anniversary excursion. We didn't have definate plans on what we were going to do other than stay at the Marriott in Dallas. Once we got there I noticed the Dallas Aquariam was right across the street. Mike was not to thrilled that I was "making" home go to the facility. However, once we started our tour he was very impressed.

We really liked the shark tank!

Mike had to get a close up of the Jaguar being a boy. I mean really???

After the aquarium we went to the only place where everything you could possibly eat has been dipped and fried....the Texas State Fair.

Mike says fried bananas are........well not that great!

The State fair reassured as that we are old and after about 1.5 hours we headed back to the train to take us back to Dallas. We met a sweet but dirty old lady who kept wiggling her eyebrows at me regarding "our anniversary". I couldn't help but giggle at her. Once we got back to our room we talked about where to eat. We had originally thought of an upscale steak dinner, but we settled with the Italian homestyle cooking of the Spaghetti Warehouse. We settled into their bar area to eat, watch the Rangers play, and have some drinks. We were greeted by a very sweet but rather drunk bartender and she was pure entertainment the rest of the night. So the night away was a success, but I did find myself wondering about Jude. I knew he was in safe hands with nurse Allan and our sweet friend Fleck.

When we got home the next morning I had the following conversation.

Me: did you get up a lot?

Fleck: Not to bad only about 4 or 5 times

Me: Oh good

Fleck: but there was one point where I thought the cat had crawled into your blinds. He was up on the dressed banging them as hard as he could when I remembered your blog and that you said he wants out. So I got up and he went out.

Me: Makes you want to hurt him huh?

Fleck: Not sure how you do it everyday I would hurt myself or someone else by now.

So all in all it was a good weekend!

So during therapy yesterday I mentioned I watched Jude in Speech. I also went to watch him in Physical Therapy where they failed to bring the therapy dog. Jude was NOT happy! He was crying so hard that they were trying everything to get him to calm down. So I began to talk to him and every time I would talk he would turn his head towards me and listen. Then he would turn his head back and cry, but he knew my voice. The therapists all commented on how well he responds to me and that made me feel great.

Therapy and mobility

2011-10-24T13:51:00.000-05:00

Today on lunch I went up to Jude's therapy center to meet a rep with the mobility company. While waiting on the rep to arrive I got to sit in on Jude's therapy session. They are now using one of the therapy dogs with Jude to get him to stay calm during the Vital Stem. We have animals at home, but I have never really seen Jude respond to our animals the way he does with the therapy dog. The dog really calms Jude and Jude will relax his hands when "Walker" puts his head on Jude's lap. I was really amazed at the effect the dog had on my kiddo.

Soon the rep arrived from Amigo Mobility and we chatted about the issues we are having with Jude's chair. We showed him where the bruising was on Jude's leg and he measured Jude. He then got his tools and worked on Jude's chair for awhile readjusting it. He was very honest with us and explained that Medicaid will not want to get Jude a new chair and is going to fight us the whole way. The fact he has a new diagnosis with the Scoliosis will help because his stroller chair is not good for the Scoliosis. He then pointed out there Jude has no more room to grow in this chair. So his suggestion was to order some additional padding to last him until he outgrows the chair completely and then we will file that the chair is "maxed" out. He is going to order another bath chair regardless of the fact that it's only two years old. He said "when it's maxed it's maxed" We have a three year old that is almost 4 feet so a baby bath chair isn't going to work.

We then discussed lifts for Jude since he is so big. They have portable lift that will take Jude off the bed, off the floor, off anything and carry him to where he needs to go. This will be so much easier on myself and primarily on Charlotte. Last but not least we are getting a portable suction unit to go on Jude's wheelchair in case he throws up at school. He is throw up sessions have been much better lately, but when he starts throwing up it takes awhile for it to stop. Therefore, we have to keep his airways suctioned.

While discussion the lift Charlotte put a thought into my head I didn't have before. Currently Jude uses his exercise mat when he lays on the floor and plays with his toys. She said she worked for another family that had a platform built like the one at our therapy center. This helps the nurse and the family. Seems to me it would also help the child from being on the floor so much. So I did some research online and found this.

It's the exact same height and looks the same as the one in the therapy center. I would just need a thin mattress or a large mat to go on it. It would be odd having a bed in my living rooms, but I give up on trying to have a cute house. It just isn't going to happen anymore. So I am going to talk to Mike about getting something like this for Jude during the day.

I was really aggravated today because I was so pressed for time during Jude's meeting. I had to get back to work but I wanted to concentrate on what Jude needed. I so wish I could magically pay off my house and get a converted mini-van so I could stay home with Jude. I would like to be the one that drives him where he needs to go and be able to attend his appointments. I really do!

Head injury and stars

2011-10-21T08:35:00.000-05:00

Well I made a really dumb girl move last night. Ever had one of those? I was getting groceries out of the back of my car and started to close the top when I noticed I left something. I reached back in to get it forgetting I pulled down the top and rammed the top of my head into my car. For a second I thought I may black out. It was bad enough that my husband came running. Emily then got a wet rag with ice because I was positive I had broken my head open. Mike pulled my hair back and said, "You didn't break it open but it is really swelling up". UGH!

I feel terrible today. Coming from someone that has had a severe concussion before that affected my recognition I am pretty sure I gave myself a really mild concussion. My ears are ringing, my eyes are swollen, my head throbs every time I turn my head. Just brilliant I tell you! Right before my big anniversary weekend.

If I could have stayed home in bed I would have. I am sitting at work pretty miserable patting myself on the back for a dumb job well done!

Emily's Smile Boxes - an old post I noticed didn't publish?

2011-10-20T16:24:00.000-05:00

On October 7th Emily held her big 13th birthday combined with an Emily's Smile Boxes fundraiser and box party. She and her friends put together 400.........yes 400 boxes for local hospitals. We don't organize Emily's Smile Box events to expect gratitude we just do them to help others cope with situations we have been through. Although, I have to mention that this event generated 3 emails with pictures and thank you's! We were so happy! It's nice to know that the boxes arrived in the places we designated them to be and that her boxes have made an impact. We adore seeing the pictures of the sweet children with their coloring books and more.

The biggest impact we can hope for is a child that recognizes the importance of helping others. Recently Miss Bailee Ray emailed requesting to hold an Emily's Smile Box event in her home town. She worked so hard to raise the money to put together 50 boxes. She was just shy the total amount when a generous donation from Dustin W came in. We offered to pick up the difference and send her the necessary tools to complete her mission. Her mothers' numerous emails describing her daughters joy in helping others symoblized why Emily's Smile Boxes was established. She even wrote that when she asked her daughter who she would like to invite to help make boxes her daughter picked the one girl she knew had some trouble at home. She wanted to include her in a "worthwhile" event she said. So we may not hear from every child that receives a box. In fact the emails may be slim, but the ones we do receive .............. well they will be the kids that will change the world.

Watch out America. Emily's Smile Boxes and her friends are making bringing the positive to override the negative in the world! I predict lots of Smiles in our nations future!

For further smiles and positive impacts please visit the website for Rachels Challenge. You never know when you may be the "link" to spreading a positive message. http://www.rachelschallenge.org/

funny and fittings

2011-10-20T16:19:00.001-05:00

Yesterday was mine and Mike's anniversary. We plan on celebrating this weekend. Our amazing friend Fleck is going to watch the kids at night when the nurse leaves. We are going to go to the fair and then have a nice dinner out together.

Last night Jude thought his sisters mustache was hilarious...

Just kidding, but she does look funny! I was actually telling Jude how cute he looks in his Polar Bear jammies I got him and he thought it was so funny.

So Jude's teacher wants to take him to aquatic therapy which I am THRILLED about. She thinks he will do very well in the water and I always thought he would too!

Oh and to follow up from my prior blog.......we got denied on diapers.........again. sigh! Oh well. Costco diapers are great.

So we meet Monday with Amigo Mobility at Jude's physical therapists office. They are working on the fitting for Jude's wheelchair. We are also going to talk to to the company about a lift. Jude is getting to heavy for Charlotte and myself to lift. Mike mentioned that sometimes we feel truly uneducated when it comes to therapy equipment for Jude. We feel like he may be lacking for items that would further improve his life because we don't know what to provide him. We research and we listen to his nurse, teachers, etc. I guess I sometimes wish there was a manual about how to care for special needs. Anyone else ever feel this way?

How I feel

2011-10-18T16:20:00.000-05:00

“Ignorance and inconsideration are the two great causes of the ruin of mankind”

That about sums up how I feel with some people lately. Just bleh!

I don't feel like talking about it. I am just going to be grumpy for awhile until it wears off.

It never gets old :)

2011-10-17T17:24:00.000-05:00

A trip away and a thank you!

2011-10-15T22:27:00.002-05:00

I felt compelled to write this blog after communication I received regarding my post about going to New York. I think the best comment I received was from Charlie's mom who understood what it's like to struggle with a situation very different from other families you know. Charlie's family struggles with the same situation we do. Do we take Jude with us.......knowing he will be miserable, stay home and not get away, or leave him behind and feel guilty. Sometimes it's a no win situation, but getting away and recharging your battery can sometimes be a great thing.

I also felt compelled to write based on my own hold ups. I am a busy person. I work full time, I run my daughter's charity, and I run a natural pageant system. The pageant system is my pride and I work very hard at it because someday I believe it will be a great success. To accomplish this success I feel the need to travel a few times a year with Emily. This normally requires two days on the weekend. I sat down and started to think about our time away from Jude or home. 3*2 = 6. Mike and I went to Hawaii for 5 days and if we travel to New York it will be 3 days. That's a total of 14 days. Let's add four days to that just to add in time away for parties, airport delay's, etc.

That's 18 days. After listening to my fellow need special needs moms respond privately to my blog I wanted to voice something. Bash me if you want. 18 days.........put that in perspective. God knows I love my children with ALL my heart. Every night for 365 days (well minus the 18) a year we draw Jude's medications, we change his diapers, we accept he won't be potty trained, we hook up his IV feed, we sedate him, we give breathing treatments, and we wake up...........no less than 4-5 times a night. I see people complain about less on facebook. We get up at a MINIMUM 4-5 times a night. We love our son more than life itself so we leap out of bed to reposition him.

The point is that if a special needs mom bestows the blessing on you to ask you to watch her child while she sleeps at night or recharges her batteries than please be like my family. Offer to sit the child without resistance and never wonder who will be there with you. Never wonder if a nurse will be beside you...simply learn how to take care of the child. You offering the help is the best gift anyone could ever give. A recharged battery always supplies a better flow of energy to the receiving party. We all understand that we accepted this life and our little ones have blessed us so much, but having someone to help is priceless.

We are lucky to have amazing people in our lives to step forward and help us with our jobs, my children, and our lives in general. We are also blessed to have two amazing kids. Thanks to those who help us out without question or judgement. A prayer to those that do not have the help I do because I am blessed.

HOORAY Jude!

2011-10-14T20:39:00.001-05:00

Tonight I was holding Jude and he seemed to get a bit tired of momma smothering him and wanted down on his mat. Soon he was saying, "uhhhhhhhhh". He grew louder and louder and Mike and I smiled at his communication abilities. I said, "He wants up!" Mike asked, "Jude do you want up?". Jude replied very clearly, "Uhhhhhhhhhhhhhhhhhhhhup!". We were both SO tickled. When Mike lifted Jude into his arms Jude had the biggest smile I have ever seen. Jude was so very proud of himself. He kept smiling and cooing with great exaggeration.

Jude then wanted back down again. I placed him on his tummy and Jude began moving all around his mat. His lifted his bottom, he moved his legs, he used his arms like a swimmer, and he wanted to "go go go". He even used his leg in a swimming motion for the first time.

He is making such progress and such a little fighter! We are so proud.

I also had a comment on my slide show tonight about how Jude's baby pictures look so "normal". Yes they do. Make no doubt that Jude's life is laced with a lot of medication, G button feeds, and sedation. Although, he is dearly loved. He cannot walk, he has trouble seeing, but he is starting to communicate. He is rebelling against what the doctors said. I hope he rebels for a really long time!

A scare and NYC

2011-10-14T15:53:00.001-05:00

I had a bit of a scare today regarding Emily's Smile Boxes and Emily being in the public eye. It may very well be nothing but a bunch of kids, but nevertheless I was a bit creeped out. Although, I believe it was just that...a "scare". We monitor Emily's charity like hawks and all emails that come through the website and the primary email go through ME first. Emily handles making the boxes, appearances, etc, but be assured that I handle every aspect of the rest of the company. I am a smart woman and I have known from the beginning of Emily's venture that I would need to watch her closely. She is tightly protected so in case you are wondering.......mama doesn't play nice when it comes to her baby chickees!

Anyway, I think I mentioned that I have three nights at a Marriott hotel. I suggested that we go to San Antonio for Thanksgiving and take Jude to Morgans Wonderland. I wanted to see Emily's path light for her award and let Jude for on an accessible merry-go-round. Mike reminded me that he would be at the Cowboys Game on Thanksgiving.......darnit! So he looked at me and said "How about New York?" I was a bit surprised he suggested it and replied "what about Jude?". He suddenly seemed sad both that Jude could not go and we could not go. We had talked before hiring a good friend that has training with caring for someone with needs to sit Jude if we needed her to. So I suggested "Let's use the respite and hire her". I explained to him in a calm manner that it's okay to want to go somewhere. Truly it's okay to want for things. Every day couples take vacations with and without their children. We could always take Jude to Morgans wonderland in the Spring when it will be a bit warmer. Mike seemed interested and started talking about how amazing it would be to show Emily New York City. We fly for free so we could go for the weekend and only have to pay for meals. We are still considering it, but the thought is there. Are we sad that Jude wouldn't go with us? Of course. Do we know he would be in good hands .... yes. Do I think it's important to take these mini excursions throughout the year.....MOST definatley.

So Jude slept pretty well last night which is a great thing. Emily has a sinus infection today and isn't feeling well. We are hoping for a relaxful healthy weekend.

A progress report

2011-10-13T15:38:00.001-05:00

Jude came home with a "progess" folder from school yesterday. His folder contained his very first progress report. It explained which goals he had met and which ones he had not. It was encouraging to see Jude has began to meet some goals and discouraging to see he received a 0 out of 5 regarding reaching and grasping. Inside his folder he also had a "school picture day" form. I smiled because we never thought of Jude paritipcating in school pictures. I am not sure why I didn't think he would be included......he should be. I don't buy Emily's school pictures because she receives so many through Mike and Tiarra. Although, I decided Jude should have his. So I filled out the little form and slipped my check in the order form. I then placed the envelope back into his folder for Charlotte and shed a little tear.

Emmy Roo!

2011-10-12T10:03:00.000-05:00

Happy Birthday to my beautiful Emily. I am so proud to be your mom! You are more than I could have ever hoped for in a daughter. Thank you for all your help with Jude, for your warm smiles, and for just being you!!

Jude's dr visit

2011-10-11T13:47:00.000-05:00

Jude had a neuro visit today. The doctor said he thought Jude looked very well and said he thinks his seizure activity has decreased. He did give Jude a prescription for Valium in case he has another episode where he is rigid and arching. He believes this is attributed to the Schizencephaly and that there is little we can do about it. Although, he wants us to avoid another ER trip is possible.

So I mentioned yesterday that Emily's birthday was a success. You can see the news piece they did on her at this link.
http://www.wfaa.com/news/local/13-year-old-would-rather-give-than-receive-on-her-birthday-131373953.html

Last night I gave Jude 3/4 of his sedative vs 1/2 to see if it would help him sleep better and it did. He woke up once about 1:30. Problem is I guess he slept SO well and soundly that he was bright eyed and laughing up a storm in his bed at 5am. Man, I just can't win...lol!

Whew I am pooped!

2011-10-10T13:12:00.000-05:00

Emily's party was a huge success and I will post more pictures soon. I am worn out though. The party was a lot of work and Jude was up a lot last night. So until I post more here is a cute picture to enjoy.

Jude is feeling better

2011-10-06T10:29:00.000-05:00

As you can see Jude is feeling better. He found his giggle box again. He even enjoyed our walk last night.

A little off and a view of fate

2011-10-05T09:46:00.001-05:00

Jude is just not himself. I am not really sure what is going on. It may be his teeth or it may not, it's always a guessing game. He got upset on our walk again last night and he continued to wake up from 2am on this morning. Honestly.......we are all really tired again. Mike suggested that we might try increasing the sedative to 3/4 a table vs 1/2. He was originally prescribed a full tablet, but it was to much for him at the time. He also isn't smiling as much as he normally does. He still smiles and giggles, but he just seems a bit off. Mike and I plan on sleeping late on Saturday when the nurse is there to watch Jude. We are keeping a close eye on the little boy to see if there are any signs of anything going on. Jude is truly enjoying school! He went to recess for the first time yesterday and got to ride the swing. The teacher said he loved it!

So this morning on the radio I was listening to an interview with Seth Macfarlane the creator of Family Guy. He is a truly interesting person seeing how he writes, acts, sings, and more. He also had a fascinating story with a fascinating response. On September 11, 2011 he was booked on flight 11 which was the first plane to hit the north tower. Due to a hangover and an incorrect time written down by his travel agent he missed the flight by 15 minutes. When the radio personality asked him if he has pursued a more meaningful life since being spared by fate he had an interesting reply. He said that he believes we put to much significance upon life situations that just revolve around coincidence. Who is to know he might have been hit on the street this morning if he had stepped out a few minutes later. I was fascinated by this because it was a different way of thinking than what I am used to. I truly believe in fate. Maybe he had more to do here? Maybe he wasn't intended to be a martyr on the planes? Who knows, but it was an interesting thought process. Everyone is so different.

So I tried to highlight my hair last night since I am running a bit low on funds and we are out of credit at the salong. It didn't go that well which is surprising because I have done this with ease in the past. I am pretty brassy and funny spotted! Oh well, I guess it makes for interesting conversation.

They got fired!

2011-10-04T14:06:00.000-05:00

Yesterday I had to make two stops on my way home from work. Once I got home I informed everyone I was taking Jude for our walk prior to cooking dinner. The sun was setting and I wanted to get that time in with him. The rest of the family wasn't thrilled, but they went with it. Emily even came along to keep me company during the stroll. We got about a block away and Jude started getting very cranky........which is unusual. He isn't comfortable in his wheelchair, but he will normally tolerate because he likes the walk so much. I began walking faster because I knew that Jude wasn't going to make the walk long. Emily shouted "You are like a sprint walker" as she struggled to keep up. Anyway, we got near the model homes which is about a block from my house and Jude LOST it. So I had to take him out and carry him all the way back to the house while Em pushed the wheelchair. We made it back, but I noticed my foot was starting to tingle. When I took my shoe off my sock was soaked in blood near the toes......I guess Jude is much heavier than I thought. We think Jude is near 45 pounds now.

So ladies have you ever had one of those nights where you look at your husband knowing that you love him, but the thought of smacking him sounds good to? After my walk I came home to cook dinner, clean up after dinner, change Jude, haul in the 30 pound dog food bag from the car, put it in it's bin, household chores, gave Jude his meds, etc etc etc. My husband and my child conveniently disappeared when I was doing all this work and left me with the baby to watch. God love them huh? Then when I finally sit down to burn some music and play on my lap top my husband appears from around the corner. I thought to myself "If this man is about to say he needs something I am going to hurt him".

Mike: Are you going to move your clothes?
Me: I just got tired and laid out my laundry on the bed. Can you move them over?
Mike: Well they need to be put somewhere or I am sleeping around them
Me: (is he kidding? I am thinking to myself......while hunting a sharp object with my eyes)
I sighed, got up.....stomped in the room........moved them to the bench and walked out.
Mike: Well I could have moved them
Me: Yes you could have
It wasn't even worth it.

ARGH, men. Gotta love them, but sometimes I swear.

So after that I was letting Bigsby outside to go potty before bed and Bigs goes bounding out the door. Suddenly I see what I thought was a black cat run next to Bigs. Bigs seemed a bit scared, but cruious. Then even more suddenly our cat Scooter flies to the rescue and pops the said cat in the nose while hissing at him. I see that signature black and white tail puff out to the size of TX. "OMG" I yell. I quietly insist........"Bigsby Bigsby come here". Mike comes running and Em tries to bound out the door. I grab her "NO Emily it's a skunk!" She then acts like it's no big deal and Mom is the big nerd for getting so upset. I got Bigsby back in the house, Scooter the cat is the big hero, and the Skunk ran off without spraying anyone or anything, which is shocking.

Me: Emily why on Earth would you think that's not a big deal
Emily: Well I mean.. what happens?
Me: You would get sprayed
Emily: Well wouldn't you think that was funny?
Me: No it would be awful!!!!!!
Emily: Well it would be funny if you got sprayed

That's IT! The whole famdamily was fired!

A big of an update

2011-10-03T09:36:00.001-05:00

This weekend had a lot of emtions flowing through it ... as usual. On Friday I received a phone call that the in home therapy company we were wanting to use has Jude on a waiting list only. On top of that we received information that getting him a new wheelchair will be a fight. We also began talking about how difficult it is getting to lift Jude thus the future need of a lift in our house is a reality. Jude is literally the size of a 5 year old at 3 years. We know these items are in a future and I just hope they happen without a huge struggle. Wishful thinking? Probably.

The good news is that Emily and I had an amazing weekend together. Every year Emily goes to reign for a pageant system ran by our friend Beverly. When Beverly heard about Emily's charity she stepped forward and offered to create a catagory in her system called the "Emily's Smile Supreme". Every child that registers contributes 100% of their entry fee to Emily's charity. Emily herself picks the girl with the best smile and inner beauty shining through. This year Emily picked a wonderful little girl. After Emily picked her we explained that the little girl has been hospitalized with her own struggles multiple times. Emily had no knowledge of this prior to picking her. This little girl was SO excited when she won the big huge Emily crown. She said it was better than any grand prize she could ever receive. This made Emily VERY happy! Next we were touched by a little girl named Julissa. Julissa walked up to Emily at the pageant and placed a very heavy shoe box in Emily's hands. This little shoe box was covered with Emily's Smile box stickers and sayings. It seems little Julissa had taken it upon herself to create this Shoe Box and take it to all her friends, family, school and more. This girl raise more than $100 in change!!! We were amazed. What an amazing heart!

The huge Emily's Smile Supreme crown.

The sweet donation box Julissa made

Just look at all she collected

So after our eventful weekend we came home to Jude laughing and wanting us to hold him. I took him for a walk, with Big....of course, and Jude giggled most of the way. He is now laying on his mat with smile and giggles waiting for his medication and to go to bed. We will start another week one step at a time and looking forward. (This was written the night of 10/2)

Ps. Jude was probably up twelve times last night. I am dead on my feet today at work as I am sure Mike is too.

A walk, A button, and a wish for a pillow

2011-09-30T09:40:00.000-05:00

Today.......you won't believe this. Emily trained with Charlotte on how to replace Jude's G button. Charlotte thought it was important that everyone in the household know how to replace the G button in case of emergency. Emily had no fear about learning the G button process. Charlotte said she took it out with ease and put the new one in with ease. It's amazing to me that my soon to be 13 year old child can perform procedures many Rn's do not complete on a regular basis. If you have never seen a mic-key button you can google them.

Jude and I missed our nightly walk on Wednesday so we took Emily and walked last night. He giggled the majority of the way. He has started this new game where he throws his head out of the wheelchair and giggles because he knows I have to place his head back in the neck ring. Our nightly walks have become so routine that when I rolled Jude's wheelchair into the living room to pick Jude up our dog Bigs immediately hopped in the bottom carrier. Yes, Bigs still rides.......he doesn't walk. Mike commented on how the dog was worthless last night. I replied, "Seems pretty smart to me......I mean he hitches a free ride vs walking".

Jude was up again a few times last night and I was rather frustrated about 4:30am. It is still hard for me to grasp that we may never really sleep through the night again. Is that selfish to be frustrated? I mean poor Jude is reaching out to me because he is so aggravated he cannot roll over on his own. I would get so tired of laying in the same position that I would wake up several times during the night too!

We have a busy weekend lying ahead of us. I hope everyone has an amazing weekend.

Diaper drama and therapy progress

2011-09-28T11:47:00.001-05:00

It seems my diaper post created a buzz about town. I received more emails from non special needs parents and special needs parents than I ever have. The tone of the emails reminded of the parting of the red sea. The non special needs moms were so sweet and generous offering me great advice on where to pick up bigger diapers. The special needs moms realized I was upset I needed diapers at all and that Pampers email sent me over the edge for a few minutes. Regardless, both sides were just so nice and I was overwhelmed by all the amazing help. For the record my medical supply company is working on obtaining the diapers again through the MDCP program.

I reached out to therapy 2000 here in the metroplex and they can do in home therapy for Jude. This is amazing! They are pursuing physical, occupational, and speech, which is what he has at Baylor. The bus driver almost injured our nurse and Jude transporting them to Baylor on Monday so the in home therapy is a must in my eyes. I also talked to the medical equipment company about the new wheelchair. They are going to wait until the physical therapist has been assigned by Therapy 2000 and then they will work together to secure the perfect device. We also heard from our nurse of a doctor that can do a test to tell what Jude can actually see. I find this fascinating! We will be completing that test for sure.

So Emily is doing well. She has her big birthday party/fundraising event next Friday. We are completing 400 Smile Boxes to go out to local hospitals. She has a raffle, a costume contest, and more to raise funds for her charity. She is also doing well in school and is busy working on her play the "Wizard Of Oz". She has also decided that her future goal is going to be to compete in the Miss Texas/America system for the Miss Outstanding Teen. This is a lofty goal, but once I think she will do well at. We are working on getting her "resume" together showing her scholastic abilities and accomplishments. She has chosen that her platform will be Pediatric Stroke Awareness and she is currently picking a monologue for her talent. She needs to obtain an acting coach if anyone knows of one that is willing to work with her on the weekend.

After Emily's party I have decided to take a break from everything until January 1. I need some rest and would like to spend some time with the family.

The G button incident........

2011-09-26T21:15:00.001-05:00

Tonight Mike went to the Dallas Cowboys game........without me...insert evil eyes. It's really okay because I wanted him to go have a wonderful time with his friends because he deserves it. So we had a nice relaxing evening at home. Emily has been doing homework and Jude and I went for our nightly walk. Once we got home from our walk I began to get Jude ready for bed, like I always do. I changed his diaper, put him in his pajamas, positioned him into bed, and readied his medication. I pumped the feeding into his IV bag and positioned the IV line for his G button. Then I began inserting medications. When I got to his sedative I felt a tug.........then a stop..........then my mouth dropped open. I do a lot for Jude........, but Mike replaces the G button (if our nurse is out, but it's only happened twice without her).......I just haven't been able to yet. "Not tonight Lord" I whispered........ "please". I pumped, I plunged, I pushed....I used soda, I used a q tip, I sprayed water all over everywhere due to pressure build up......and the Lord replied "It's time to learn Jennifer". OH NO! PANIC. I calmed my nerves and picked up the phone to call our nurse. "Charlotte" I said meekly. "Jude's button is stuck and I need you to walk me through physically taking it out and replacing it." Let me just tell you that woman is our angel. She spoke to me in a soft gentle manner with clear instructions. I grabbed Jude's G button bag and quickly followed all her commands. I put the water in the new button too make sure the balloon would inflate. I then put K Y jelly on the tip of the new button so it could be inserted easily and quickly. I let the water out of the old button to deflate it and began to tug to pull it out of Jude's stomach.......and he began to scream. I began to cry because I was hurting him and I felt like I was ripping his insides out. Charlotte calmed me down and assured me it was just because the button had been in for a long time. I soon got the button out and cleaned the open wound........and Jude laughed so I breathed a little easier. I inserted the new button and checked for placement. I knew how to check for placement due to the NG tube, but I still worried. Emily stood there the entire time offering her assistance if needed. Near the end of my conversation with Jude I asked Emily to run to get me Motrin which she did. She brought back the whole bottle and then looked at me with a grin. " I guess you need it in a syringe huh". I think we were all very frazzles, but ........we got it done.

Thank God for Charlotte. Like I said........I have done and learned more in the medical field than I ever imagined without a degree, but this I hadn't done yet. What an experience. Whew! You veteran moms are awesome, but I don't like doing that...lol.

** follow up. I had a good cry tonight. I cried because I innocently didn't know how to take care of the G button incident without help and I cried because I SHOULD have known how to without help. It was a conflict of emotions.

Pampers and Pissy Pants

2011-09-26T09:41:00.004-05:00

So when I was pregnant with Jude I went and signed up for the great notifications and coupons offered from companies like Pampers, Enfamil, and more. After Jude's diagnosis I quickly took myself off the lists when I started getting bombarded with Emails in regards to my baby's progress. The emails reminded me Jude had a lack of "normal" progress and I didn't like that. The only email that has been very difficult to shut off for some reason is Pampers. So since our insurance has still not approved diapers I had to go to the store yesterday to rummage through the aisle to try and find size 6 diapers. I guess they don't sell that many of those size so the larger boxes are always difficult to locate unless you buy training pants, or go Costco. So I buy two small packages to make up for the large package I need. I get home and Jude was just smiling away like he knew I had brought him new diapers.

Once I got to my computer I sat down and there IT WAS.... was a happy joyous email from Pampers telling me how they have a great training pant for my toddler. It will move with him while he runs, walks, sits, and gets into items. I muttered a few hateful words to the diaper company, hit delete, and then mentioned how it would be great if they supported special needs families. Maybe a great picture of a special needs baby on the box with the slogan, "we even have YOUR butt covered". Guess that wouldn't be very media friendly huh?

Okay so I am a little miffy today ... SUE ME! I was up with Jude ten times last night. I am so cranky that I think it should be mandatory for people who don't sleep for so long to win the lottery so they don't have to work. Well not really, but it sounded good.

** follow up ~ Thanks for all the emails, but the blog was more about my Pampers email than the diapers. I can go to Coscto and get the big box of diapers for Jude. Also, Medco is working on getting them covered which shouldn't take much longer. You guys are sweet.

Wow!

2011-09-23T09:35:00.000-05:00

Last night I picked Jude up and wrapped his legs around my waist with my arm supporting his back. He held his little head up and I could tell he was looking over at Mike. Mike then walked around me and Jude's head followed Mike. This is a HUGE accomplishment for him!

I was proud! I think Mike may have thought it was a fluke, but I watched Jude's motions. He is working hard.

A new wheelchair?

2011-09-22T09:37:00.000-05:00

Today I put a call into the medical supply company that we use. We are going to start the process to get Jude a new wheelchair. As I stated before his current wheelchair doesn't fit him anymore and it's not the proper equipment for his newly diagnosed Scoliosis. We are also looking into getting Jude a large bean bag to sit in. He is very uncomfortable in his tomato seat, but he will stay there for about an hour. Jude's favorite position is to lay flat on the floor, but he cannot always be in that position. It isn't healthy for him! He is making great strides on lifting his head with the wedge they have provided him from school. It looks like a boogie board with a strap to hold Jude's legs down.

I believe that we finally have the perfect dosage of seizure medication. Jude doesn't seem over medicated nor does he seem under medicated. It seems we have hit the level track of the roller coaster and I hope we stay there for awhile.

I am working with Jude on saying "Good Night" when he goes to bed. He will make vowel sounds at me so I know he understands I am talking directly to him. Charlotte said his speech therapists wants us to repeat Jude's sounds to him after he makes them. I have been trying to do this and he does perk up his head when I repeat what he says. It's pretty cute!

Emily is still well. She has all A's and one B on her progress report. She is also working away on her play that will premier in November. I also took the time to contact a talent agency about working with Emily. I am not sure anything will ever come of it, but she requested that I talk to someone.

Well two weeks and we will have Emily's big party, fundraiser, and box making party. I am thrilled at the potential turn out. I think it will be a success.

A weekend away

2011-09-21T12:04:00.001-05:00

Sorry it's taken me until Wednesday to update. This past weekend was a whirlwind of fun. We took Emily to a pageant in Dallas that she really wanted to compete in. We all gathered ourselves and our suitcases up and then headed out to the hotel. Jude has several suitcases, but he made it too and as you can see he loved the hotel bed.

Allen our weekend nurse came to stay in the hotel during the day with Jude while we ran around getting Emily ready for competition. Allen is just so sweet. Every time he would see Emily he would compliment her on how pretty she looked. He had the big curtains pulled back and Jude was laying in the sun smiling away. About 1pm on Saturday Jude started running a fever, which drew a little concern, but that quickly subsided when the Motrin brought the fever down. We attributed it to teeth.

Emily truly had a blast. She was there with her friend Havyn. Emily and Havyn met at a pageant 10 years ago and have been close friends ever since. This was Havyns first pageant in 9 years!!! Havyn spent the night both nights in our room.

Saturday afternoon the big girls competed. Emily did beauty, then fashionwear, a ballerina routine, and then her talent. She performed a Monologue from Alice in Wonderland. She was truly amazing and did so well all day. When she got done she said "Mom I am so proud of myself. I really tried hard and it doesn't matter what I get!". I was very proud of her! Saturday night they had a "Hollywood Premier" party. All the girls walked the red carpet going into the party. After the party we all went down for a dip in the hot tub.

Sunday morning we got up with a bit of butterflies in our tummies. We all went down to crowning which was in a large ballroom to hear the results. As the crowning moved on they starting calling winners......but they didn't call Emily. The further the crowning got the more excited we got.........this meant she could have pulled a large title. They called more names, and more, and then the last one in her division. I looked over and I saw Emily's eyes well up with tears. "I got the grand mom" she whispered. "I know" I said and I had tears streaming down my face. Then we hear it "The 11 and up GRAND SUPREME winning $1000 is EMILY". We all jumped up, cried, hugged Emily, and were just so excited. Emily doesn't need a pageant to let her know she is beautiful inside and out. Although, I thinks she does so well because they do see her inner beauty shine. Here is Em with her big crown.

Cool thing is Emily's friend Havyn got a great title too! We all had so much fun and we adore their family. They have helped Emily so much since Jude's tragedy. They sew clothes for her and so much more.

Jude did amazing all weekend and I think he had a good time. He was very happy to be home.

Although, I think Emily felt a bit like Christmas just ended.

So we submitted information to Scottish Rite to put Jude on the list to be considered for orthopedic therapy. He needs a new wheelchair to accommodate his scoliosis so I hope we are able to do that. He is doing amazing in school and his nurse assures us that he is very loved there. He is also outgrowing his bath chair. It's amazing how tall Jude is. He is making great strides with his head control too. Jude's issues are really mostly upper body so to see him lift his head high when on a wedge is a great thing. It's becoming difficult to get Jude to all his doctor appointments since Mike and I work. Charlotte can go with him through SPAN, but that proves to be a nightmare every time we use them.

Speaking of Love, I had a client call yesterday sobbing. She had lost her husband a few weeks ago and just sobbed "He was my entire world". It just broke my heart. Death just seems to sneak up on people and hurts those they love.

Emily's Smile Boxes received another large donation yesterday. We will now be able to hold a Christmas Box party on top of her 300 boxes form her birthday party in two weeks. We are just thrilled!!!! That's so many children we can help smile for a bit.

NACE donation

2011-09-15T15:29:00.000-05:00

As a follow up to my post this morning here is the picture of Emily receiving her amazing donation to her charity Emily's Smile Boxes. What a blessing! This will help so many children.

Rise and Shine!

2011-09-15T06:49:00.000-05:00

Mike normally gets up at 4:30am to go work out, but today he decided to skip a day. I think we all needed that extra hour of sleep. Jude did not wake up until Mike got up for work at 5:45. Mike and I had slept hard until that point. Jude got up a few times last night, but he was up for the day when Mike was leaving. I laid in my room listening to him laugh through the baby monitor for a bit, but now I am up. He is in a very good mood this morning. I just walked into his room and he started laughing. I told him to not make fun of mommy without makeup :).

Last night we went up tot he Marriott to finalize the plans for Emily's birthday party/fundraiser. We walked into a room FILLED with supplies the DFW NACE had collected for Emily's Smile Boxes. Joy who works for the Marriott had worked with NACE to collect all the items. I will post a picture of everything later, but we were truly overwhelmed. It was so nice! We are surrounded by great people.

Jude, sleepless nights, and my opinions

2011-09-14T17:17:00.002-05:00

Jude was up about 2-3 times every hour last night. I gave him a stern talking too (just kidding), but he didn't listen. Therefore, I have really been pretty tired today. Although, since I started working out again I am not overly tired. Jude seems to be doing better with his illness and he is making great progress in school. Charlotte said that he turned from his side to his tummy three times today. He is also still smiling and laughing a lot. He is just a happy little boy. I hope he is so because he knows we love him so much. The other day at Cook's ER Jude was doing his "running" on the gurney and I asked him "Jude where are you going?". To our surprise Jude replied "Hoooooooooon" and kept running. I truly believe he thought he was going to his home he loves so much. If anything ever happens to my job I have to do what I can to keep our home. He feels so safe and secure there and really expresses this to everyone that comes to our house. Jude also had a bruise on the back of his calf last night and I was concerned. I get concerned any time I feel like he is hurting. After calling Mike in to investigate the bruise he matched it to his leg braces. Charlotte is worried that the brace got to tight either in the bus or on his wheelchair. They are going to loosen them up a little. We also are going to look into a different wheelchair since we know Jude has scoliosis. We are planning on taking him to Scottish Rite to see a orthopedist.

So today I ordered the last supplies for the 300 Emily's Smile Boxes we are making at Emily's birthday party. I also ordered 30 boxes for a friend who wants to hold a box making party at a Cinderella pageant. If you haven't heard of Cinderella scholarship you can see them at this link: http://cinderellapageant.com/. They have a small prelim in Weatherford and they wanted to promote making the boxes. It's 100% natural and a great system. This leads me into my other topic. It seems a horrible episode of Toddlers and Tiaras has made the cover of People magazine this week...sigh. Emily is disheartened when she hears people ridicule pageants because she works so hard at them and loves them. I try to explain to her that the community as a whole has a habit of judging everything by it's appearance and lumping everything into one category. This show is based off ratings and therefore they follow those families that will boost their ratings. A natural or toned down system that promotes charity work and teaches girls about inner beauty wouldn't rate as well as something so scandalous like a high end glitz system with a skimpy outfits on toddlers. I am appalled a woman would dress her 3 year old up as Julia Roberts playing the hooker in Pretty Woman. As a director I would have personally pulled them off the stage. When that aired I looked at my husband and said "this is a joke right? This can't be real". Let me stress that there are good systems out there that promote education, fun, charity work, and more. Emily doesn't use hair pieces, or flippers, and only uses natural photo's. This is just our choice and one we stand by. Yes, she wears makeup under the harsh stage lights. Emily has a wonderful coach who supports her and works with our family. We have made some of the best friends possible doing pageants and we are grateful for them. Our non pageant friends she and I have brought to her events have left saying "that was so fun and not what I expected!". So I hope that America knows that there are positive sides to pageantry. Emily is eloquent, she makes excellent grades, she works hard, and she is gracious when winning or not winning. She understands that pageants are not based solely on beauty but also hard work. She had her choice between softball, dance, pageants, theatre and more. She personally chose pageants and theatre. Someday her goal is to go into the Miss Teen Texas sector and hopefully obtain a scholarship for college. Anyway, I just wanted to express my views.

Emily's Pageant coach Cristina. One of her best friends. She looks like Miss Universe huh?

This is Maddie! A pageant girl hard at work helping out her community

Pageant girls making Smile Boxes.

Great friends are made at pageants. Regal Princess contestants.

Everyone has their opinions and I understand that. I personally didn't like the competitive side to cheer, but again that is just me. I also don't like the heavy glitz side of pageantry hence why I push natural or toned down.

We all walk about our lives and do the best we can. I hope to touch others by telling our story, being the best person I can, and loving my children. I support them when they make good conscience decisions and I think Emily has done that well.

Oh and a big hooray for Em. This will be over 4300 boxes she will have passed out!!! What an accomplishment. I am so proud of her!! One day I do think she will reach her goal if getting a box in every hospital in the nation.

Jude makes me smile!

2011-09-12T10:00:00.000-05:00

Per my prior blog you can see about that Jude really is ALL boy....because he loves fart noises (insert laugh here). Jude is feeling better, but is still getting pretty congested before bed and is having a hard time sleeping. He doesn't fully wake up, but he whines multiple times throughout the night requesting to be repositioned. Mike and I are both really tired! Charlotte got there today and I let her in the door and then stumbled back to bed for 45 minutes prior to work. I slept so hard that I thought I had been in my bed for three hours. I panicked and checked my phone.......it had only been twenty minutes (insert another laugh).

Jude was a funny boy all weekend. I went to the restroom and when I had gotten back little Jude had somehow manuevered a cloth diaper on to his face. We keep the cloth diapers near him in case he throws up. Anyway, he thought it was the funniest thing EVER!

He makes me smile!!! For a long time I wondered what I did wrong to have a baby that had so many medical issues. Maybe I had done something in my past? Now I realize I was really blessed with the perfect child that has touched so many people's lives.

Hello Cook's ER .... we are back again!!

2011-09-09T17:34:00.000-05:00

Jude was up congested throughout the night. He coughed, he wheezed, he just seemed very restless. I went ahead and went to work after informing his nurse what his night was like. About 9am I got a call at work that she was concerned about Jude. That is highly unusual for her so I knew she was concerned. She said that Jude had suffered about a 45 minute cluster seizure, had an elevated temp, and his heart rate was hovering between 180 - 200. After calling the DR we called 911 and had them come get Jude.

Luckily we were discharged with a diagnosis of a viral upper respiratory infection most likely contracted from allergies from the TX wildfires. Crazy huh? So we are at home with a prescription for steroids (if needed) and extra sedative to help him sleep through the seizures.

Luckily he is okay. Also, can I ask for some prayers for my cousin. She is facing a difficult time right now and her heart needs hugs.

Thanks!

follow up

2011-09-08T11:49:00.002-05:00

It seems someone nominated my little ole blog for an award. How neat is that? If you want to vote here is the link

http://blog-awards.parents.com/blog-awards/mom_blogs/908

A little update about school

2011-09-08T09:47:00.001-05:00

Jude is creating the habit of getting up when Mike leaves for work which is about 5:30am. This is wearing me out. I am not a morning person. My family always jokes that I want "all my minutes" when I am sleeping. My husband would prefer to just get out of bed when he wakes up. I would hit the snooze button 100 times if I could.

Jude is continuing to do well at school. His nurse Charlotte said that vision therapy and physical therapy both came to see him yesterday. The teachers also made the decision to have Jude in a classroom where it's one on one. There was another little boy in there, but someone has to always be holding him or he runs to Jude and creates issues. I was worried about the level of noise disturbing Jude at the school, but Charlotte said he loves hearing the children. She said that Jude starts "talking" when he hears them. Charlotte is trying to communicate to the teachers what Jude can do and what our goals are. She said they are currently a bit "scared" of Jude. I understand exactly what she meant by saying the word "scared". People are afraid they are going to hurt him so they are very timid when they first meet him. Soon they learn that Jude loves to play, tickle, and "wrestle"....he is very much a boy.

Last night when I got home I laid down in the floor with Jude and said "so this is how you see the world?". Jude likes being on his mat and looking around. It's his favorite place to be and to play. He will bat at his musical toys over and over. Would I prefer it if Jude was outside playing football? I wish that for him, but he is really happy just playing with his toys on his favorite mat in his home. He loves his home.

I need some time away with my husband again. We get so immersed in our lives that we forget about needing time for each other. I am going to work on making that happen even if it's just dinner out.

Pictures and school

2011-09-07T13:06:00.000-05:00

I thought I would just share pictures today to follow up to yesterdays blog.

Working on head control

Em at the museum

Mike at the museum

Jude is all smiles for school!

Jude's teacher loves him! I love this picture!!!

the weekend

2011-09-06T08:53:00.000-05:00

It has been a beautiful labor day weekend at the Ortiz house! Jude had the perfect birthday party which was quiet, inviting, and full of friends and family. We had the perfect balance of those that loved to play and those that loved to just sit and particpate in conversation. In the end Jude got lots of wonderful fall clothes, a few musical toys, and lots of hugs and kisses which are invaluable.

Tomorrow my little boy starts school. We are all a bit perplexed in regards to the bus schedule and how the day will play out, but I guess it's that way when Emily starts too. In the end I am sure it will all work out. I felt a bit unprepared, but I did call and find out what I could regarding his transportation.

I have so many photo's to share from this weekend, but I decided to post them after Jude's first day. Mike and I also decided to start a work out routine tomorrow today, but on different playing grounds. When Mike and I met we were both very into fitness. I don't mean your average run of the mill circuit machines, but meals, trainers, muscle mass, BMI, and more. At one point my BMI was 7%...no joke! I knew what to eat to fuel my body to exercise and to live. Some people can take excersise to an extremime, but it's something I loved. I let it go because of everything that happened with Jude. The gyms do not allow disabled children with seizures disorders in their daycares so I really felt I had NO time to work out. It wasn't fair to come home and leave him. Jude really could not stand going out for the amount of work out I desired, and I desired his life in mine more than I did the work out. I am not sure it will work this time, but I am still trying. Starting tomorrow I am on a 60 day STRICT DIET! No sweets, no wine, and a heavy work out. At the end of those 60 days I can gradually fit my treats back in...just like I used to. Mike was all geared up today. He left the house at 5am with his gym bag, his supplements, and his lunch. Hopefully things went well for him.

I will post lots of pictures on Wedesday :) I am hoping everything goes smoothly today with Jude's school. He got me up at 4 this morning so I know he is going to be a bit tired today.

HAPPY BIRTHDAY BABY JUDE!!!

2011-09-01T17:19:00.000-05:00

Tomorrow is Jude's third birthday. What a blessing he is to us! I hope for many more years with my precious little boy. Happy Birthday son, I love you.

"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him". – Pablo Casals

tired, over it, and 9-11

2011-08-30T09:21:00.001-05:00

I am a dramatic and emotional soul...I always have been so I have no excuse for my behavior I just embrace it. So the 10 year anniversary of 9/11 has me immersed in the stories of those that were lost, found, and were brave. Emily came home today and we shared the following.

Em: So my history teacher talked about 9/11 today
Me: Oh really?
Em: Yea, she asked whose parents have been torturing them with history channel footage from the event..I raised my hand (She seemed smug)
Me: great, thanks for throwing me under the bus.What did she say?
Em: She gave me an "uh huh" kind of reassuring nod
Me: Good for her (that wreaked of sarcasm)
Em: Well then my teacher said she watched 5 hours of footage past midnight because there were no commercial interruptions. So it seems she watches it all too

Suddenly I liked the teacher again. So Mike pointed out that I had taped the George Bush national Geographic interview.........and man we were in for a bumpy night.......... fasten your seatbelts.

I didn't mention one thing about teaching Emily a lesson or trying to make her feel the way I felt on 9/11... because that's impossible. Emily was only a toddler and doesn't remember where she was when America came to a screeching halt. There have been many shows on our American tragedy with sad stories and documentaries, but this one........was amazing. We all sat in our living room watching the footage of our President in 2001 speaking about what happened, where he was, and what needed to be done. Emily watched and was surprisingly very interested. Mike and I would pause the TV to explain certain circumstances about what the President was talking about. We would tell her where we were at the time of the incident and how we were feeling. Emily threw a lot of questions at us about the event that she didn't understand.

1. Why the terrorists did this to us
2. Who was Osama Bin Laden
3. Did the people on the plane know what was happening
4. How many firemen died in the building
5. Why did the second building hit fall first.

She asked lots and lots of questions. We took our time to answer each one the best we could. She also asked "Did we declare war?". My response, "Of course we did Emily! I for one was proud of our President for declaring war. It was needed. Many people protested the war and that is their right. The other day Em I read an article about stories from 9/11 and the dedication ceremony that will take place at the opening of the memorial and it stuck with me. A gentlemen had lost his wife in the first building. She was standing on the floor where the plane hit......and well there was nothing left to bury so this is like her grave to him and it means a lot. He said that at one point he stopped going out because it would really anger him when people would tell him they were sorry for his loss but they don't believe in the war. He wanted them to step into his shoes".

I noticed Emily got tears in her eyes on two scenes. One when they showed the scene where the building fell and all you could hear is the squealing of the fireman's alarms because their bodies were laying still for so long. The second scene was a picture that National Geographic posted of two of their own photographers that traveled with some teachers and students that day on one of the flights. Em looked at me "They died". "Yes hun" I replied. After the show was over Emily came over from her seat and sat next to me on the couch. She said "I get it mom. For the very first time I really get it...how very sad" and she cried.

We take for granted being American and we take our freedom for granted. We forget about those who lost their lives and those who lost people they loved. Everyone was affected that day and we shouldn't forget!

Also, I am EXTREMELY tired! Jude is requiring to be repositioned several times a night. I haven't slept well in.........well three years. SO if I am crabby or incapable of helping anyone this week you know why. I am starting to get sick again which is again from lack of sleep. Jude really doesn't ever wake up. He just moans and cries wanting to be turned over. It's just getting out of bed and the sleep disturbance that is truly taking a toll on my health.

A quick video and another tragedy

2011-08-26T09:50:00.000-05:00

This week has been difficult. So I would like to share something positive. This is a video clip my wonderful friend Derek did of our Emily's Smile Box scholarship winner at my pageant. I am so proud of her family.

We got more information regarding another family affected by tragedy this week. One of my best friends in the world had a very good friend gravely injured. Many prayers are needed for the young girl affected by the tragedy.

The impact of taking your own life

2011-08-25T12:31:00.001-05:00

We attended the service for my friend yesterday and it was so sad. So without going into to much detail I will finally share with you what happened. On Friday I talked to an old friend who is also a long time client regarding his account. Worried about his condition at the time of the call I called his wife who I have been friends with for probably 20 years. She had heard from him several times that day via phone so she was well aware of why I was calling. After I hung up with her about 8 minutes later he took his life while on the phone with her. It was devastating, tragic, and I was extremely sad for her and mad at him for committing the act while she was on the phone. I got the call on Saturday about what had transpired and cried myself to sleep. What "if's" floated through my mind about our call, but I know that is very normal. I have been through a similar situation before.

Flashback to when I was 15 years old, very innocent, and very naive about the world in general. I met the prettiest boy I had ever seen. He was tall with sandy blonde hair, golden brown eyes, and naturally tan skin. He looked like he needed to be in Hawaii riding a surfboard. He was beautiful, so very nice, but troubled. I soon had my first real boyfriend and I was 100% infatuated. The only issue was that he lived about an hour away from my house so we could only see each other on weekends. We talked every single day and I am sure if text message had been invented then our phones would have blown up all day long. He talked to me about he wished he could please everyone, but he couldn't. He struggled through those difficult teen years and in the end the years won. The night before everything took place he drove all the way out to my house in the middle of the night......without a license. We snuck out (shame on us) and we talked for hours under the moon at a local park until a police officer started wondering why two youngsters were out so late chatting. We were brought home by the police. It was humiliating because I was considered such a good girl. The next day while sitting in class I received a message that I had a telephone call come through the office. I was suppose to call the person back on a pay phone...it was my boyfriend. On the other end of the phone he admitted he had skipped school which I scolded him for. He then told me he was considering ending his life. He had mentioned this before, but the problem was I had no idea he really meant it this time. Let my post be a message to everyone out there that if someone mentions suicide always take them seriously. After some encouraging words from me we got off the phone with an "I love you". Not sure it can be real love at 15, but I sure felt like it was. I had a track meet later that day and while laying on the grass waiting to run I got the worst feeling in the pit of my stomach that something was very wrong. I jumped up and ran to my coach telling him I had to go home right then! I called my grandfather in tears and he came to pick me up. I tried calling my boyfriend, but his mother answered which was very odd and in a panic I hung up. I sat worried at my house waiting for my boyfriend to call.....but he never did. Later that night I finally got a call from his best friend and my first words were "Where is Chris?". He replied "Oh Jen no one has called you? Chris hung himself today". I was devastated! I was a 15 year old having a nervous breakdown. It turns out his mother walked in from work to find him. How horrible, how cruel. I struggled for a long time to make sense of the situation. He left me a note that I still have to this day tucked away in a cedar chest in the attic. His father would write me to help me get through everything which was very kind. I remember thinking I could feel Chris near me or that I could hear his voice. I saw him in the shadows when no one was there. Maybe they are around to help comfort us? I have reached out to his family since, but for obvious reasons I am sure they don't feel comfortable talking to me. He is still on my mind and I hope he is at peace.

So while at Chris's funeral and many times afterwards I had several people tell me that those who commit suicide damned to hell. I don't believe this and never have, but you are welcomed to have this opinion. I believe that my God is compassionate and forgiving. So my friend who took his life this past Friday's father cried to me about how people were telling him the same thing. Why someone would mention this to a newly grieving father......I have no clue. He must have expressed this same situation to the pastor who ran the memorial service, because his lesson was based off a passage in the bible I had also pointed out. The only unforgivable sin is the following...

MATTHEW 12: 31-32 "Therefore I say to you, any sin and blasphemy shall be forgiven men, but blasphemy against the Spirit shall not be forgiven. And whoever shall speak a word against the Son of Man, it shall be forgiven him; but whoever shall speak against the Holy Spirit, it shall not be forgiven him, either in this age, or in the age to come".

It is also not our place to judge what will happen to that person it's God's place!

Now let me point out as someone who has been through the loss of someone from a self inflicted method.....it's selfish! You leave those you love behind to pick up the pieces and it's just not fair. IT'S NOT FAIR! The person in such a depression doesn't think about all the small ends that your poor family has to tie up.......it's awful. If you just wait.......things do get better! We battle emotionally with a lot of wars, but life always finds a way to work itself out. If you focus on the positive then eventually the negative will fade away. If you fight and have the courage to fight then God is there to help you through your rough time. Trust me I have had my share of rough times. The above is just a sampling of my childhood. So take your "story" and let it make you a better person.

My boyfriend never knew about many new beautiful parks, small cell phones, texting, PS3, Ipads, or other material things that I think he would have loved. Isn't that strange to think about? How time moves on without you there? I used to talk to High schools about the impact of suicide. I was told over and over that the largest impact I made was when I said "If you dream about a funeral and how everyone will attend......oh they will.......but in a few months your friends will just move on and barely think of you as they go to prom, graduate, get married, and have children. Although it's your family that will be devastated and partially crippled for the rest of their lives." At the service yesterday his young son got up to the podium. He paused for a moment and looking at the crowd he swept his hair out of his face and spoke "My dad was a good man!" he said like he didn't care what anyone thought (good for him) then he continued "My dad was at every football game, every practice, and every function I ever had since I was little. He was a good man and that's what I will choose to remember". Good for him, God bless him!

My thoughts and prayers are with my friend as she find the strength to work through this. I pray it makes her stronger and she finds a happy life.

fire!

2011-08-24T12:40:00.000-05:00

So yesterday at work I started getting phone calls that there was a large fire near my house. After my initial panic I foun d out what happened. Luckily the fire was about 2-3 miles from my house and was in the median on the highway and was rather controlled. It seemed there was an accident and a tanket truck carrying jet fuel exploded. Not just fuel ....... jet fuel. SO basically they had to shut the highway down in both directions. Luckly there are some small dirt roads that not many people know about that lead to our subdivision. It took me almost two hours but I finally made it home.

This was the site from our house. Luckily everyone survived the accident and the fire eventually burned out.

I have the memorial today. I will check back in tomorrow.

Meeting Jude's teacher and get OUT of my way!

2011-08-23T11:01:00.001-05:00

I thought I would start this blog off with something happy! I loved the way Jude was interacting with Mike.

So we went to Jude's meet the teacher night at his upcoming school. When I got home Mike was laying on the floor with Jude.
Me: You guys ready to go
Mike (in Jude voice) F you momma I am not going to any school!!! Daddy said he can teach me everything right here (as you can see Mike is rather resistant)
Me: You are going to school
Mike (Jude voice) No I ain't momma!
Me: You are now going for using the word ain't
Mike (Jude voice) NO I AM NOT
Me: Get ready we are leaving
Mike: (Jude voice) insert naughty word
Me: That's not nice!

Jude laughed through the whole conversation. Once we got Jude loaded and Em loaded we ventured down the road to his school. The handicap parking was full......of course. So Mike dropped us off at the front and went to find a parking space. We manuevered through the foot traffic with children constantly bumping into Jude's wheelchair. I made a rather derogatory statement about the failure to eat right on the mothers part thus pushing the kids into us...shame on me. So we kept walking and I had not one but three mothers not paying attention yelling "HEY GUUUUUUUURL" throwing up their arms and plowing into Jude. I tried to quickly move his chair, but they would bump right into us. On the third plowing incident I finally stood still and angrily said "STOP! If I have ONE more person bump into this wheelchair for failure to pay attention someone is getting thrown down". The husband of the third wife grabbed her by the arm, looked at her sternly, and then opened the door to the school for me. I am not happy with my behavior, but I had reached my breaking point. Once we got back to Jude's classroom the teacher was amazing. She didn't expect us and was so excited to see Jude. She stroked his hair and talked sweetly to him for a long time and he responded with smiles. The teacher thanked us for entrusting her with Jude and that's when daddy Mike lost it and cried. Awwwww! Here is Emily and Jude right after meeting the teacher.

So Jude will go to school on 9/6 and Emily started today. She was so excited she woke up at 6:10am. She could not go back to sleep so she said she laid in bed and watched two episodes of Good Luck Charlie.
Here is Emily leaving with her best friends today. They are all getting so tall.

Tomorrow I am attending the funeral of the party I mentioned yesterday. Not sure I am prepared to go, but non the less I will be there. I will write tomorrow about what happened. On a closing note, be happy in your life. We never know just how bad things can be. So make a goal to be grateful for someone or something specific today and acknowledge that gratefulness outloud.

Tragedy and something positive.

2011-08-22T10:46:00.000-05:00

I had a tragedy strike this weekend with a long time friend who is also a client of mine. There is more detail, but I am not ready to go into it yet. Let's just say when I got the call it was a "You have got to be kidding me" moment. It's been awful and I am reeling from it not to mention how horrible I feel for his family.

So rather than going into that story I am going to share a good video of Jude. Overlook my squeaky mom voice and the camera cord that keeps getting in the way.

Therapy for Schizencephaly?

2011-08-19T11:04:00.000-05:00

Periodically I like the research in regards to any new treatments for Jude's main medical condition which is Schizencephaly. I found this article which did a great job of explaining his condition cause by the stroke.

http://ezinearticles.com/?Schizencephaly-Treatment:-G-Therapy-Shows-Positive-Effects&id=5622402

It also led me to this website about a new therapy.
http://www.g-therapy.org/

I obviously cannot jet off to India, but it looks like they work with customers in the US via a primary contact in India.

I haven't read much on this therapy but it is encouraging to see that doctors are researching Schizencephaly. My original research showed they were lacking information in regards to the disease.

Normally when we contact hospitals or therapy centers regarding Jude's condition (ie stem cell) we are told that Jude's case is to severe for them to take him on. We get that answer a lot with therapy equipment too. We finally understand that they want to try to help kids that have minor issues with mobility and have the opportunity to live "possibly" a normal life. Jude doesn't have that. Not every place is like this, but it is a common answer we receive. Honestly, I am happy with Jude's PT + OT and the life we live. Although, I do like to educate myself on what is out there.

A thank you and a lesson to us all whether it be pageants, softball, football...etc

2011-08-17T22:18:00.001-05:00

Today a mother that attended Regal Princess with her daughter sent me a thank you note. It was such a blessing to receive such a warm greeting from someone with such a positive spirit. Her daughter took a face title and received a special crown. In her letter she sent me a thank you and then some wonderful advice. I would like to share you a synopsis.

"I just wanted to say thank you for having us at your pageant. My daughter had a wonderful time. She made a few new friends and enjoyed everything. She was pleasantly surprised at her win and is so proud, and so am I. The crown was absolutely beautiful.

I have also attached a photo of my oldest son with his Senior Prom (his sister was his date, she's awesome) he just turned 21 last week. The other photo is him in his Halloween costume from last year that I made him. What a blessing he is to me and everyone who meets him. I found the Article by Erma Bombeck that someone gave me when my son was 6 and it changed how I feel for every day. I know where you are right now in your life and I know where you will be going. Embrace each day no matter what. There will be frustration, and its okay to not be a perfect mom, don't try to be because it will tear you down. As long as you are doing the best you can that's all that matters. Don't worry, there will also be alot of days filled with joy. I promise!!"

When I opened the photo it showed her adorable 21 year old son crippled by Cerebral Palsy in his wheelchair next to his 12 year old sister. The picture melted my heart and I burst into tears. I cried because he had far outlived Jude's 5 year life expectancy and his mom had loved every moment of his life. I cried because her precious daughter hopefully learned that physical beauty is just physical but inner beauty lasts a lifetime. In fact I am sure she has learned that lesson.

Rather it be school, football, softball, skating, cheer, or pageants every person is brought into your life for a reason. You are led down a path because God has a purpose. Maybe mine was to meet this amazing mom. I am thankful for her bravery to reach out to me. You made a difference in my life today. Thank you.

Kentucky, Fire alarms, and learning to be gracious.

2011-08-15T16:09:00.001-05:00

So as I stated Emily and I jetted off to Kentucky this weekend for AUE a pageant in Louisville and here is a synopsis. Friday night we got to the hotel and we went off to registration only to learn there were 230 kids registered. Yep TWO HUNDRED AND THIRTY...lol. Nothing like a little competition. The hotel was gorgeous and so unique full of ornate woodwork and old dark doors. Once we were registered we got Emily to bed to get ready for the competition the next day.

Emily and I were able to sleep in a bit on Saturday because she didn't compete until the afternoon. Once we got up and had breakfast we were ready to go for the day. Then my phone rang and it was Mike.

Mike: Jude woke up with a really high fever
(I excused myself away from Emily)
Me: Oh no. Like how high?
Mike: 103 and climbing
Me: Take him to the ER
Mike: I am. I just wanted to let you know. If it's aspiration you know they will keep him.
Me: Well if it's something serious I will fly home. Let me know and I will figure things out from here.

So I decided to keep the news from Emily. She had worked hard for this weekend. Now let me explain. When someone tells you that a girl works hard for a pageant they mean it. That's one thing that Mike understood after he first watched Emily practice and he commented on it. He said, "Wow I get it. This is a sport". Girls that compete in say Miss Teen Texas don't win by just getting up there and standing there. They learn how to walk, how to articulate, they learn about the world, and they learn a talent. The harder you practice the better you are, just like when Emily does softball. So I didn't want to make her nervous about Jude until I knew what was going on. I called our friend Gina who is always a life saver. She offered to get me on the next flight home if needed and she would fly to stay with Emily. I told her I doubted Emily would stay if something serious was happening with Jude. I told her I was holding out hope that Jude would have something minor going on. The hotel had horrible phone reception so I kept having to leave Emily to check my phone. I knew she was catching on that something was up. She finally looked at me and said "Is Jude okay". I said "Well he is not feeling very well and I am just waiting on Mike to let me know how he is feeling" She seemed satisfied with that response.

Soon Emily was getting ready to compete and I just thought she was stunning!! We rolled her long hair and our friend Michael styled her. Here are a few pictures from the weekend.

Emily ready for beauty. I loved this dress on her.

They had Rudolph out advertising their Christmas specials. Emily liked him.

This is Emily's friend Sydney. They competed in the same age group together. I had just bought them Shirley Temples and they were having fun.

Mike finally called from the hospital and said they had ran a battery of tests. At first they thought Jude had aspirated because his breathing sounded rattled so Mike was prepared to stay. They then came back and said the X ray was clear. So they gave Jude an IV of antibiotics and of fluid. They then took some blood and urine so make sure there wasn't an underlying blood infection. Then they sent Mike home. I felt terrible I wasn't there with them, but I was thankful Jude was alright. I then told Em what was going on, but that everything was alright and she was relieved.

After competition Emily and I went on a horse and carriage ride.......she loved it! It was the only thing she wanted after competition and for $20 we had to take a spin around Louisville. She giggled and smiled most of the way which made me happy. Once we got back we had dinner with several friends which was a lot of fun too. We finally retired.......exhausted from the day.

About 3:18am I hear "WHOOP WHOOP a fire has been reported please proceed to the nearest stairwell WHOOP WHOOP". I was so tired that it was one of those "am I dreaming" type of moments. When I finally got my senses about me I went to look out our door because I was sure this was a false alarm. I discovered the entire hotel evacuating and we seemed to be some of the last ones on the floor. EM RUN!!! Em "Where is my bra?? mommy can't go free as a bird!". She laughed and panicked at the same time. I finally found said holder and we darted out the door and down four flights of stairs. This was a great scene in the wee hours of the morning.

It seems it was a false alarm so we all headed back to bed .......... only to hear "WHOOP WHOOP...." again. Sigh, back out of bed we go...back down the stairs and I said "will the drunk people PLEASE quiet pulling the fire alarm!" Emily giggled. It seems there were several bachelor and bachelorette parties about town that night.
Sunday was crowning and Emily was all ready to go. She knew she had done so well at interview and on stage.

The crowning was very long! When they got to Emily's group we learned she placed in natural photo, print model, composite, interview and received 5th runner up. This meant she could still win a big title. So she came back to met and sat down and we waited. Once they got to the end I looked at Emily and saw her eyes tear up a bit.

Me: Emily! There were 230 gorgeous girls here this weekend. Did you have fun?
Em: yes a blast
Me: Did you do your best?
Em: yes I did
Me: Then that's what matters!
Em: I know I am just disappointed
Me: and that's perfectly okay. You are allowed to be disappointed. Think about it Em, Football teams get out on that field every week and work their hardest. Sometimes in the last two minutes of the game the other team wins and they have lost all that hard work they did, but they learn from it and move on. They also understand that the other team they were playing worked just as hard as they did.
Em: I know mom.
Me: Well good. It's up to you how to handle this
Em: I had a great time and I will just get out there and try again. I want to go to the one in Dallas next month.
Me: ummmm good attitude but we will see......let's get through this weekend first girl.

Kid has spunk! Anyway, it was a wonderful weekend and Em and I had a great time together. I got to market Regal Princess a lot and Emily talked to several people about her Smile Boxes. We did miss out first flight so we got back about 8:30pm last night. I came home to Jude irritable and not wanting to sleep. He then spiked a high fever again at about 3:00am. I gave him some Motrin which brought the fever back down again. We are suppose to watch him over the next five days. If he continues to spike fevers we will have to take him back in. Until then we are just suppose to use Motrin to help keep the fever under control. Also, Emily woke up with a sore throat today so my guess is it is something Viral. Also it seems our dog Biggy has separation anxiety when I am gone...not a good thing. Mike said he wouldn't come out of his crate and just wasn't himself.

This week starts the beginning of the back to school chaos! Emily starts school projects on Saturday. So my fall is going to be very busy!

Cowboys, Reunions, and Planes.

2011-08-12T11:20:00.000-05:00

So last night I raced home to get the family to go to the Cowboys pre-season opener. Charlotte had Jude all dressed up for the occasion. Charlotte truly is a gem!

The air was filled with excitment as everyone made their way to the big stadium. I thought it was gorgeous, but a bit overwhelming. The girls seemed to love it.

We had awesome seats in the club seating area and the field was very visable.

What I found a little unusual was that the monitor was so large over the field. It's nice, but I found myself watching it more than the field.

We left at half time to get home in time to relieve the nurse. All in all we had a great time and the girls had sore throats from yelling so much. Not to mention Faith trying to start the wave...the entire night. She was cracking me up.

Once we got home the nurse marked that Jude's temp was a little elevated. He was sound asleep and I had missed being with him that night. I kissed him before I went to bed and told him I loved him. I got a little smile from his sleep.

So this weekend is my 20 yr reunion I talked about. The festivities start tonight and I have already gotten several phone calls from people wondering why I am not going. I was so active in school that people are surprised I am not going to be there. First, it's very hard for us to get an RN that would stay past midnight. With an event like this you know it will be a late night. We have the nurse from 7am-5pm. Second, I could go on my own and leave Mike with Jude, but I wouldn't feel right going to a function like that without him. Third, it's hard having people you don't see often tell you how sorry they are regarding Jude. It's sweet and thoughtful, but it's still hard. Fourth, I see many wonderful people from my high school that I have been blessed to still be friends with. So instead of the reunion Emily and I are jetting off for a weekend together at 3pm today. I am going to market and Em is going to compete. One last hoorah before school starts. I felt more comfortable with this trip than the other. I am still nervous over planes rides, but I am getting better about it. I am conquering my fear which makes me feel more empowered. Now let's all pray! lol.

Have a good weekend everyone.

Tigger and Cowboys

2011-08-11T10:57:00.003-05:00

So last night we put baby Jude to bed and he fought it every step of the way. He is now resisting naps and trying to resist going to sleep. He is a true toddler in that sense! After we finally got him to bed I was just exhausted and wanted to go to sleep. Emily begged me to watch her practice so I made her agree that one time would be plenty and then I was going to sleep. So I walked upstairs to Mike's "man cave" and said "I am watching Emily do her routines and then I am going to bed". I kissed him on his head and walked out. I then watched Em and as promised I then walked off to go to bed afterwards. Em followed me ....she bouncy, trouncy, flouncy, fun fun fun fun fun, she was Tigger the only one.....sorry but that's what was in my mind. I finally convinced her I was going to sleep. She had to leave in a huff with a comment about me being old and then she scooted off upstairs. About thirty minutes later Mike came downstairs.

Mike: You didn't tell me you were going to bed.
Me: Yes I did
Mike: No you didn't
Me: Yes I did I even kissed your head and said I was watching Em practice and going to bed.
Mike: Oh......all I noticed was the kiss and wah wah wah wah wah
Me: Like the Peanuts teacher? really?
Mike: I just don't hear you anymore we are growing apart babe just face it.
Me: Sigh, I guess so. Guess you need to hook up with someone in your warehouse
Mike: No way man........(pauses) I love you
Me: I know.
Mike: No I really do, but your kid has way to much energy
Me: (laughs) oh no did she come after you when I went to bed. She is just pent up in the house waiting for school to start.

At that moment we hear thud thud thud thud from her running across the floor upstairs and then suddenly the thuds coming back the other way.

Mike: She needs to lay off whatever she is on I mean it's not good for her
Me: Giggle......you're wrong really wrong.

Tonight Mike, myself, Em and Faith are going to the pre-season opener with the Dallas Cowboys. Our nurses worked together so we could go.....we are very lucky. Mike's boss handed him the tickets and said he appreciates Mike. When he got them home he looked down at the value of the tickets and each one was marked $350...........WOW. First, for pre-season?? Still that's awesome. I cannot wait to see the seats and I am so proud of my husband for doing such a great job at work that he gets rewarded in a big way. Way to go Mike!

Prayers, Pageants, and parties

2011-08-09T12:57:00.003-05:00

So can men get baby fever like women do? I am here to tell you that they can. Saturday I caught my husband cooing over a baby that was at Target. Then today we went to lunch together and again he was making sweet faces at a newborn. He started talking again about how he wants another baby and I understand his desires. Mike loves Jude very much, but he also wanted more kids from the start. The thought of it scares me to death, but again I understand his wants. We still don't have insurance so it's not even an option right now, but I wanted him to know I relate to his desires.

So Jude is doing pretty well and fought through his immunizations like a prize fighter. This proves to me that he is one strong little boy. He does have the issue with the Scoliosis or the bone loss which is concerning, but we don't have a diagnosis on that yet. We understand it means it could shorten his life span, but we cannot worry over that until we know what's wrong. He will be going to get an X ray very soon. The good news is Jude is making more vowel sounds and he is doing this cute movement with his legs like he is walking. I guess he figures that since he cannot stand up he is still going to show us he could walk.

So I posted on facebook this morning that I am holding a pageant prelim in November. I got several emails from people who were confused so I thought I would explain. You hold pageant prelims because they are small pageants. They introduce your system to new kids and to existing kids that compete, but have never tried your system before. Our plan was to hold 5 of these a year leading up to nationals and to take Emily to 5 big nationals to advertise. It works like this. Say Emily won Miss Roanoke then she would go to Miss Texas and then on to Miss America. Make sense? Anyway, I have already had some interest in the prelim. It's just beauty and casual wear with little to no makeup. We want a fresh sweet look. This will lead the way for the girls at the prelim to compete at nationals. I am truly excited that this business is going well. I have lots of little girls competing for the queen of hearts prize that my royalty competes for. They are all doing lots of community service.

It was nice to have lunch with Mike today. We have been passing each other a lot with work, starting of school, and more. Next week will prove to be busy since Emily and Jude are both about to go back to school. Well Em and I hope a plane on Friday everyone please say safe prayers for us.

Also, we are working on Emily's 13th birthday party which include an Emily's Smile Box packing event and a fundraiser . We still need raffle donations for the event. If you know of anyone that can contribute please let us know. It is tax deductible.

2011-08-08T15:04:00.000-05:00

My friend sent this to me today with a little note that said "this made me weepy". It made me weepy too and I think it's wonderful! I agree with the message.

A farmer had some puppies he needed to sell.

He painted a sign advertising the 4 pups and

Set about nailing it to a post on the edge of

His yard.

As he was driving the last nail into the

Post, he felt a tug on his overalls.

He looked down into the eyes of a little boy.
"Mister," he said, "I want to buy one of your

Puppies."
"Well," said the farmer, as he rubbed the sweat

Off the back of his neck, "These puppies come

From fine parents and cost a good deal of money."
The boy dropped his head for a moment..

Then reaching deep into his pocket, he pulled out a

Handful of change and held it up to the farmer.
"I've got thirty-nine cents.

Is that enough to take a look?"
"Sure," said the farmer.

And with that he let out a whistle. "Here, Dolly!" he called.
Out from the doghouse and down the ramp ran

Dolly followed by four little balls of fur.
The little boy pressed his face against the chain

Link fence.

His eyes danced with delight.

As the dogs made their way to the fence, the little boy noticed something else

stirring inside the doghouse.
Slowly another little ball appeared, this one noticeably smaller.

Down the ramp it slid.

Then in a somewhat awkward manner, the little pup began hobbling toward the

others, doing its best to catch up...
"I want that one," the little boy said, pointing to the

Runt.

The farmer knelt down at the boy's side and said,

"Son, you don't want that puppy.

He will never be able to run and play with you like these other dogs would."
With that the little boy stepped back from the fence,

Reached down, and began rolling up one leg of his

Trousers.
In doing so he revealed a steel brace running down

Both sides of his leg attaching itself to a specially made shoe.
Looking back up at the farmer, he said, "You see sir, I don't run too well

myself, and he will need someone who understands."

With tears in his eyes, the farmer reached down and picked up the little pup.
Holding it carefully he handed it to the little boy.
"How much?" asked the little boy... "No charge,"

Answered the farmer, "There's no charge for love."

Lots of shots.

2011-08-05T21:29:00.000-05:00

Today was not a good day for Jude and Charlotte. They both were transported to Jude's pediatrician and hour late where Jude was given a physical and his vaccines. Jude was in a wonderful mood and was talking to all of his doctor's until the poor nurse had to stick him with SIX needles. Jude was heartbroken and the story from Charlotte made me sad. Jude was still in tears when I came home. I wanted to pick him up but I could tell Jude also wanted to throw up. The thoughts of people telling me to allow Jude to stay on his side if he is sick flooded my thoughts. I finally just scooped him into my arms regardless of his retching and soon he became quiet. He just wanted to be held and told how mean the doctor's office was. It actually made me feel relieved that he wanted my words and touch...he was very calm.

For months I have pointed out that Jude's chest bone seems to protrude on the left side. Everyone seemed to ignore me, but Charlotte discovered it too and she brought it up to the doctor today. It seems Jude has either lost bone density or has scoliosis. Mike seemed very upset about this news, but I am not surprised. If a person is not standing erect then our bodies lose mass. I want to fix the situation, but again I am not surprised.

Overall Jude stayed happy the rest of the night. He conquered those vaccines with a heroic attitude. Thus proving to me that Jude is ready for school and more interaction....with his dedicated nurse Charlotte by his side.

Shots and more

2011-08-05T10:36:00.001-05:00

Poor baby Jude is having all his vaccines today to get him caught up for school. It makes me sad I cannot go with him and the nurse. I sure hope he tolerate them alright. He goes at 2pm so I will be waiting to hear how he does.

I am missing my Emily. She is at her dads this week and I am ready for her to come home. Here is a recent picture of her that our favorite photographer took.

Lexie Luther in the kingdom of spiders

2011-08-04T09:22:00.000-05:00

This is Lexie Luther who as you can see built a metropolis of a web in our garage.

Yes that's a black widow.......they follow ME! Mike discovered her on Tuesday night so when I got home yesterday this was our conversation.

Me: Did you kill the spider?
Mike: Well no... I had Jude...what if I went out there and she killed me or something? Jude would have to pull himself to safety
Me: Oh good grief! Well you need to go kill her because if she has a nest that's no bueno
Mike: Well he is pretty big
Me: It's a she
Mike: I think it's a he because he is big
Me: It's a she. Only girls have the red hourglass
Mike: How do you know?
Me: I know. The males are also smaller and she probably ate her mate
Mike: That's not nice
Me: Nope! I grew up around a farm and I got bit by one of those suckers remember?
Mike: Ok so you want me to kill her now? like right now?
Me: Yes like right now
He picks up a can of posion
Me: I would smash her.
Mike: but what if she gets me?
Me: She won't. I mean they aren't aggresive unless you try to get her food or hit her or something....well I mean I guess you are trying to kill her. That stuff doesn't work well on spiders.
Mike: Well it has a spider on the front and it looks like a black widow
Me: sigh
Mike: sprays poison
Me: what's wrong
Mike: she isn't there she ran away. She is going to COME FOR ME IN THE NIGHT
Me: Oh gees I am going inside.

So who knows if Lexie Luther is still alive, but superman did NOT smash her.

Jude says he is a big boy and he would have killed her!

Great moods are a good thing!

2011-08-03T12:51:00.001-05:00

I feel great today! Physically and mentally. I woke up a lot with Jude last night, but it didn't seem to phase my happy mood today. He was also very smiley this morning when I left and is back to wiggling his legs when I talk to him. I think that is just so cute. I am so much better mentally with his situation and ours. Jude is doing the very best he can and he is such a little trooper so I have decided to do the very best I can. Part of this is because our family unit is in a true dance. We moved together in sych as we care for Jude and make sure he is tended to properly. I am also so proud of the Regal Princess accomplishment. I have a great regular job, but I am proud that I started this entire business on the side. It was a huge success thanks to my friends, family, and the hard work we all put in. My sister (the youth pastor) called last night and said

My sis: That was different than what I thought.
Me: Well is that good or bad?
Sis: Good! I just expected....mmmm...
Me: (giggling) yes?
Sis: Well like crazy moms and what you see on TV. I didn't think they would actually be toned down or natural like you said and it was well..........really really fun. I see why they do it.
Me: So glad!

We also met the mother of a contestant this weekend who approached me about Jude. While at the pageant she had researched our information on Emily's charity. She wanted to let me know that her son is in the exact same situation........and is 21!! She said they told her he wouldn't live past 5. She said he is like a 5 month old, but is such a blessing. We talked about the positive of the keto diet, new marketed seizure medications, g buttons, and all kinds of special needs talk. She was such a dear and I loved chatting with her.

So Jude and Emily are both about to start back to school. How strange does that sound that Jude will be going to school? His nurse is going with him and he will only attend the days he is not in therapy. Mike is taking off a morning next week to get Jude registered. I then am taking Em after work to pick up her schedule for middle school. I also have to take Em school clothes shopping. So this weekend was my big 20th year high school Reunion. GOOD LORD AND A QUARTER I AM OLD. Anyway, I was truly not that enthused about it all. The people I want to see from high school are always available to be seen. Also, it's virtually impossible to get someone to stay long enough at night for us to go out without being worried. So Mike and I made a deal. He is staying home next weekend while Emmy and I jet off to Kentucky for her to compete and myself to market. Mike and I both thought it was important to jump back into marketing to double our numbers next year. In return Mikey has a pass at the end of the month to spend a weekend wrapped in Fantasy Football. He also mentioned getting an entire weekend to himself playing games next weekend......uh huh an ulterior motive..lol.

So I am well rested after this past weekend. I have an entire weekend to myself this weekend and we are all finally in a very very good place. :). We are smiling like Jude today!

One thing that made me smile is my newly crowned Emily's Smile Boxes scholarship winner passing out 50 Smile Boxes to Cook's Children's hospital. She cheered up lots of patients yesterday. Way to go Maddie. I could tell by her Rosy cheeks that she was working up a sweat in the back of that SUV unloading boxes. Isn't she so cute with her little pink tiara?

The very first Regal Princess Pageant and Missing my Jude

2011-08-01T12:26:00.000-05:00

Well I am at lunch and I have a chance to update my blog. I am 100% exhausted after running the pageant this weekend, but it was worth it. There were a few very stressful moments, but that's to be expected. One of those moments got out of control, but I cannot take that back now. All in all it turned out to be a good weekend. My friends and family helped tremendously!!! I sent out a text to them letting them know I felt like I asked to much of them. They replied "I felt like you didn't ask enough and count me in next year". It made me feel wonderful.

The weekend started on Friday with registration. Registration was suppose to last from 10-5, but it lasted from 10-10. It seems traffic was a nightmare and many people were late. So we all worked together to make sure everyone got registered and off to interview or talent. Each little girl made a Smile Box at either registration or before interview. I am afraid that I missed the majority of the talent competition, but I heard it was amazing. Saturday competition was held all day long. The girls competed in beauty, casualwear, swimwear, and fairytale wear. In the afternoon I ran home for a bit because I was really missing my Jude. I had to give him some kisses and then run back to the pageant.

Saturday night we held our banquet that benefited Kids Swing. You can check them out at www.kidswing.org . The founder of Kids Swing Ben Sater came to give a speech to the little girls about the benefits of community service. I have to praise my step mom Kay and my dad for setting up my banquet room. It looked fabulous!!! At the banquet my amazing emcee Rod then made a speech I wrote about how great Emily is. He told her how much she blesses our lives and we gave her her own very pink crown and banner. She wanted one of those crowns so bad. She just walked up and said "I love you mommy" and I started crying. Saturday night we also awarded our very first Emily's Smile Boxes scholarship winner. This little girl had a list of community service events she participated in that took up the entire page. Next year I am giving an award the one of my royalty that does the best community service work. Maddie started out early because she and her mom took all the Smile Boxes we made at registration to Cook's hospital today. Here is our little Princess Maddie.

Here are a few pictures from the banquet.

Sunday morning we had crowning and overall it went very well. The little girls loved their pink crowns and our Grand Supreme winner was so happy! She and her mother were both in tears. Here is our very first Grand Supreme winner Lizzy.

All the little girls were beautiful and precious. When I get my photo's in I am going to feature the group shot on my blog. I just love it :)

I am glad to be home with Jude again. He was so smiley last night and I held him as much as I could and gave him lots of kisses. He had a hard night with my aunt on Saturday, but he seems much better. Thanks again to everyone that helped me make this past weekend possible. I look forward to next year.

Head wound

2011-07-23T10:35:00.000-05:00

Mike is handling his injury very well. So far he has minimal pain, but he still gets very tired. We don't leave him alone with Jude yet, but I think he will be okay soon. His face is very swollen today and his eyes are turning black. We know they could see skull when he came in, but we are so lucky it wasn't worse. I had a friend call that used to be a paramedic he said "Dang Jenn I thought you were just being a girl and this was going to be some tiny little cut. I have care flighted people for less than that". No I wasn't being a girl..lol.

Jude is doing well, but being a bit of a stinker. He has not slept well the past two nights....it's almost like he knows we have a lot going on. So I have been up with him. Going to work after a crazy day like we had and then being up all night wasn't pleasant, but that's okay. At least I have a good job to go to. So I slept in until 9:30 today and it was great.

I will be out of touch the next week as I prepare for next weekend. Have a nice weekend!