Update

We took Jude and Emily both to the urgent care center last night. Emily has a sinus infection and they think strep throat. So she is on antibiotics. Jude has a "hazy" area in one of his lungs that the radiologist believes is viral. I am hoping he is right. Jude woke up this morning with 100.9 auxillary temp and Charlotte says he just acts like he doesn't feel well.  They did do a rapid strep on Jude which was negative, but they sent it to the lab to retest. We are going to give him one more day to see if he improves and if he doesn't we will take him back in. I am hoping he will be just fine, but we are always very cautious with Jude.

Two little sick chickadees and a promotion

I have two sick children at home. Emily doesn't look well at all. She is very pale, sounds terrible, and has that red lacy mono rash back on her arms. Jude is pale, has a high pulse rate, but is smiling. They both have an auxiliary temp with Motrin of 99.2. No bueno! So we are watching Jude closely and plan on taking both kids in after work. It's that whole mom weighing work and home today. I am going to have to pay $100 to take Em in after work vs $25 during the day because I feel bad being out while we are short handed. Not sure my efforts like that are noticed, but hopefully they are.

So yesterday Mike called me to tell me his boss had talked to him in regards to the much anticipated promotion we have been waiting for. We are really looking for the benefits he will receive. His boss gave him a RAVING review and said he was ready to make Mike a permanent vital part of the team. He gave Mike the choice of position he wanted and Mike is suppose to report back to him today. We still have not heard what his salary will be or when it will happen, but we finally know it's coming. I am so proud of Mike!! He has worked so hard and has been very patient (the patient part is not his cup of tea). For the first time in a long time I felt like I could breathe yesterday. Right now I have a list of items we need....new tires, Emily's cavities, HO-A dues, etc. Do you know how nice it will be to get those without struggling? To put money in the bank? That if I am out of a job for some reason we will be okay?? Everything has been on my shoulders for so long that it scares me to even think of relying on someone else.....but it will be so nice to know I CAN! Thank you Lord! Our prayers are close to being answered. Things have been such a roller coaster for so long that I told my aunt that I am now waiting for the other shoe to drop..........but maybe it won't? We are not "hurting" right now in regards to money. I could save for the tires or to take Em out of town, but it will be nice to just ..............breathe.

The cream of chicken soup fiasco.

Jude is doing SO well. He is still not sleeping very well, but otherwise he is great. He is making more and more sounds. He copies my mouth movements when I sing to him and he is making much better eye contact. I think school, his nurses, his increased therapy, and his loving family has helped him. I don't push Jude to further himself I just decided to accept him the way he is and let him guide me. Jude let's us know in his own ways how far he can go. I am excited to see where he takes us next.

I did have to share a funny story tonight. My husband is amazing, but you women will get a kick out of this. After work I had to go by the bank and then I had to go to the grocery store. Once I got home I unpacked the groceries, made dinner, fed the family, and then went to make a casserole for Emily's school tomorrow. I went to the pantry to grab my can of cream of chicken soup only to find it was missing. Little Miss Em had decided to make herself an after school snack. I growled at her for eating my ingredients while praising her for being resourceful. I am sure she was confused. So I then turned to my husband who proclaimed it was "crap" (jokingly) that he had to go to the store. So he gathered up his items and bolted out the door. Emily's friend Casen was over so we all sat down to watch TV for a few minutes before I got Jude ready for bed. Suddenly my phone rang.

Me: Casen...will you hand me my phone because I am sure it's my husband because he cannot go to the store without calling me.
Em: (got to the phone before Casen) Yes Mikey? Ok hold on
Me: Hello?
Mike: I lost my list
Me: (silence)
Mike: Hello?
Me: There were two things on it?
Mike: I know but I lost it
Me: Cream of chicken soup.....and a foil pan for my casserole...get one that would be shaped for lasagne
Mike: (repeats exactly what I said)
Me: babe, it's 2 things........think of all I have done tonight and I still have to cook, do meds, put up laundry, etc. really?
Mike: I couldn't do what you do that's why I married you.
Me: oh well that's nice
Mike: It's true
Me: okay so two things...you got them?
Mike: Got it!

So he brought home the foil pan............and cream of chicken soup WITH HERBS! So let's hope the Mexican casserole doesn't taste a bit funny.

Me: Babe you got cream of chicken soup with HERBS
Mike: I didn't know ... you never told me!!!
Me: I didn't even know they made that.....I mean that took special effort to pick that up
Mike: Well...........I shouldn't have had to go anyway...Emily should have had to walk to get it ..she ate it!  
Me: My casserole may taste a little Thanksgiving like
Mike: Oh sure make fun of the guy with the sore throat...just kick me while I am down why don't you. I am suing
Me: You are suing?
Mike: Yes for cruel and unusual punishment.........for for....laughing at me. For sending me to the store with multiple options!!!
Me: (giggle)
Mike: seeeeeeeeeeeeee (walking into the bedroom) I am going to watch TMZ........don't even try to open my door.
Me: (now in tears...laughing hysterically)
Mike: You are NOT funny!!!
Me: (quietly giggling)

Sleepy time

Jude is not sleeping again........not sure what the issue is. He is whining about every two hours to be flipped into a new position. I cannot blame him, but I am exhausted. It's been days of him not sleeping well. Mike just works in auto mode and doesn't even realize he has gotten up to reposition Jude. I on the other hand have a hard time falling back to sleep. I am hoping he sleeps soon!

So we went to see Emily's play last night and it was really good! However at the end when everyone started clapping I heard a squeal of terror. Jude was so afraid that he was trembling and trying to cry, but had the breath scared out of him. I felt so terrible for him. Mike rushed him to the back of the room to console him. As soon as Emily took her bow I ran back to them so I could hold Jude.

However he was very happy when he got to her play.

A pretty girl, a really bad habit, and talking to Jude.

Last night while I held Jude on the couch we "talked" to each other. I would say "I love you Jude!" and he would move his mouth like he was talking in a sentence. Sometimes sounds would come out and sometimes they wouldn't. However he would mimic me and it's the first time I have ever heard him really trying to speak back to me. Again, I would say "I love you Jude" and he would reply "aaa o aaa" or some other form of reply. It was very cute!

So as I sit here on lunch at work and stuff my mouth with Sushi I am going to share something personal and honest. I have always loved the taste of wine and I have always been fascinated with the process it takes to make it. It's one of my few real joys. However, after Jude's situation I have found myself drinking more at night so I can go to sleep. Let me point out before I say any of this that I don't ever pass out, or forget what I have done or said, I don't crave it or think about it during the day, etc etc. Although, I woke up this morning and my side was hurting and I was very tired. I started retracing my steps and realized last night I had several glasses prior to going to bed.  In the course of my life I have cut unhealthy items out of my diet to improve my lifestyle. I have cut sugar out of my tea, I drink non-caffeinated soda, I eat wheat bread vs white, brown rice vs white, No greasy french fries, etc. So it's time to do that again. I am eliminating alcohol from my diet. It killed my mom and it won't get me! So why am I admitting this? I promised to be honest on my blog from the start and my bet is that many people in my situation have coping mechanisms that have become unhealthy. That is exactly what this is....a coping mechanism. I have a terrible time going to sleep and with Jude.........well he is still like a newborn...so it made for long nights. So drinking a few glasses helped me sleep that coveted 10-2 time period. Also, I just liked it. However, I also like sugar, fatty fries + hamburgers, and DR Pepper. All items that I fought and no longer require. So I am taking a vow to get healthier. I am also going to reward myself because I feel that is important. In 8 months it will be my five year wedding anniversary and I plan on Mike and I taking a trip together. I will be healthier, back in shape, and with no need for a glass of wine to soothe my stress. So friends and family...scratch it off my Christmas list. Man I will miss my grapey sweet luscious friend, but it's time to bid it farewell.

Tomorrow night Emily's play premiers. She has literally been working on this play for MONTHS! It's their one act UIL competition and she is the lead. I am proud at her dedication and keeping her grades up during rehearsals. This week and next they have dress rehearsals until 8pm every night. She then has to come home and finish her homework, take a bath, and chores. Somehow she still fits in reading to Jude........she is my sweet girl.

Emily's Smile Boxes are making their way through the US!

So I am so happy I could cry!

Back in November we were approached by the Dallas Cowboys after a news story ran on Emily's Smile Boxes. They suggested that we contact Rachel's Challenge to see if they could help spread Emily's boxes. Before I could even email Rachel's Challenge one of their fabulous members contacted us. A former superintendent of a school district in TX came out to meet with us. He was truly an inspiring individual who freely gives of his time to others. He was a bit teary when he said "Emily I hope someday my granddaughter is like you".  I shed a few tears over that.

If you don't know the story of Rachel Scott the first victim in the Columbine shooting I beg you to read their families inspiring story http://www.rachelschallenge.org/LearnMore/WhatIsRC.php. We were truly honored to have such an amazing organization contact Emily. They explained they would like to partner with Emily and help her reach her goal of touching a million lives like their daughter Rachel did. The thought of Emily getting her boxes nationwide was overwhelming. We were a bit hesitant to get our hopes up since the radio station that promised to help her didn't pan out. However, Rachel's Challenge has followed through! As of yesterday they had blasted a challenge to their organizations signed up with them requesting they make Emily's Smile Boxes. I was already contacted by a middle school in Kentucky that has accepted the challenge. I am thrilled to see so many children helping their communities and learning about kindness.

In addition we learned today that Emily was a distinguished finalist in The Prudential Spirit of the community contest. I went online to see the state honoree winners and I was in awe. If you have the time go read about what these amazing kids have done at http://spirit.prudential.com/view/page/soc/15089. They should inspire us all to be better people!

Jude is well! A bit of a cough, but well.

A bit of congestion.

Jude has had a lot of congestion in his chest for the last few days. Both nurses have been doing CPT and I have been too. It seems like it has REALLY been helping a lot because this afternoon he has not coughed. Last night I was up a lot because Jude coughed throughout the night. However, he has been very cute and sweet. He has laughed a lot and been talking to us a lot. Last night we watched the show "Moneyball" with Brad Pitt and yet again Jude was very interested in the movie. When I talked to him he would glance at me and then quickly turn back towards the movie. I always say that he has more going on then we give him credit for.

I had a great weekend with my husband. He was very attentive to me and we have a great relationship. I am glad that we have grown closer through our circumstances. We did have a bit of bad news today. Mike's older dog Lady has a tumor. She is 14 years old so for a terrier she has had a very long life. She is still chasing her ball so she has some spunk left in her. At her age surgery is really not an option so we are keeping her comfortable. She will visit the vet soon and see what they say.  Since moving into our house I don't think his dogs have the best life in the world, but they cannot be inside dogs. One Jack Russell is cute......three is a pack of craziness. They provide me much entertainment tho.

Tomorrow starts another work week. I still miss my friend at work. She is at home with her baby and I know that's a good place for her, but I still miss her a lot.

Peace............

Peace...

It does not mean to be in a place

where there is no noise, trouble, or hard work

it means to be in the midst of things

and still be calm in your heart.... (unknown)

That saying is really how I feel lately. My work has been crazy, but my personal life is so much more grounded. Jude is well, but if he isn't my family knows what to do. We no longer search for cures or additional issues. Emily is healthy and has really found herself lately.  She is confident on who she is as a person and takes up for what she believes in. Mike is still working with his job in regards to being full time and admitted he wants another child. Who knows if it will ever happen........most likely not, but at least he admitted it to himself. I am doing okay. I have my issues, but I work through them and we march on. I even find myself..........not needing the blog as much as I used to, but loving it all the same.

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.

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

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.

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!

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.

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

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)

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

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

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!

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

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

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

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

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.