A pageant princess and a sweet boy

Emily did amazing in Nashville! She received the highest title in the 13/up age catagory! I am so very proud of her. I was already proud of who Emily is inside and out. However, I am proud of her determination to put in hard practice and stand up for a hobby she truly loves. I admire her determination and her ability to stand up for whatever she believes in whether it be her brother, her charity, or her hobby.

We had a late flight back home on Sunday, but as soon as I got home I snuck into Jude's room and kissed his forehead. He still has that sweet baby scent even though he is three years old. I sometimes wonder if that scent will always linger because of who he is. The next morning when I heard Jude's tiny squeal of laughter when he heard the garbage truck outside I ran into his room. I said "hiiiiiiiii Jude!!!" in my high pitched mommy voice. I saw his huge grin with his tiny dimple on his left cheek spread across his face. Suddenly I heard "iiiiiiiiiiiiiiiiii!". He spoke back to me!

What an amazing welcome home!

Nashville

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

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

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!

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.

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

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

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

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

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

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

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

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

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

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

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.