Tuesday, April 22, 2014

Growing in confidence!

Over the last month Jude has really made huge strides in his independence, especially in his therapies.  Every week we go to “school” twice a week.  Jude walks into that place like he owns it. First is Physical therapy, he has gone from having to real coach, redirect, encourage him that its safe to Jude confidently doing things without been asked. After he “completes” his first task he will move himself onto his second thing. After we are finished he says “bye” and “thank you” then we walk over to his Occupational therapist.  Jude loves her, I think it’s because she sings to him all the time and lets him play with puzzles! He loves learning. She works a lot with stretching his upper torso and neck. She also works with different textures, Jude has grown leaps and bounds with what textures he will touch or allow to be on him. Next we head to Speech, Jude has had to speech therapist there and he likes both. He goes into the room with a toy in mind that he already wants to play with. His speech therapist are working towards helping him communicate. We are learning signs, how to use a communication devise, and verbal speech (maybe he’ll show us all and talk non-stop) Trying to learn 1 language is tough, try learning 3 ways to communicate!
On Fridays we go for group therapy. He is in class with 5 other kids his age. Throughout the class period we cover all the therapies. He loves class! On the way there I will go down the list of people we will see and confidently says, “uh” (the sound he makes when he is “talking” agreeing with you) then he’ll “sign” their name (whatever sign he has chosen to give them that day)   Jude always wants everyone to go before him in his class. When the teach ask who should go first it never fails Jude will always point to one of his classmates for them to go first, he points to each child till everyone has a turn. I hope this sweet manner stays with him always J Jude has started blossoming in class he no longer has to have me right next to him the whole time and will actually walk away from me at times (not a lot yet but we are working on it). I say he loves his class but really we both love it!
Once a month we have someone come into our home. She works with Jude to help communicate at home with all 3 forms of communication. He loves when she comes over showing off all his things and all the new stuff he can do J
Twice a month we go to CMH for his feeding therapy. His therapist is amazing! Jude has a love hate relationship with her, loves her because she is great (she also sings to him) but he hates when she gives him massages (weird I know). He has made big strides in swallowing and oral stimulation but still has a long ways to go. Currently he is not swallowing but just tasting food. But he loves all food! He is a very complex child but she is always looking to understand him better! And he always



walks out of there with a sucker J
Lastly is his aquatic therapy! Jude has been with this Physical therapist for over a year and a half, we started out on land not water ;) but in January we transitioned him into the pool. Jude loves taking a bath but his first day in the pool was him crying the whole time and clenching to the sides  trying to grab me. Now he gets in with hardly any hesitation and cant wait to walk to the middle of the pool. The pool has a raising bottom so they raise it so the water goes no higher than his chest. Right now he does aquatics to help strengthen his core and work on his balance; he does not go under water or float on his back. Now when we pass the pool area on our way to another appointment he signs his therapist name, swim, and hippo (we don’t know why he signs hippo). Yesterday we saw his therapist at his vent appointment and we asked if he was going to go swimming with her next week started crying when we didn’t go swimming right then. She has helped him so much and has taught us a lot!
I love seeing how he is starting to enjoy therapy and how he is really starting to understand different parts of it. We are so blessed to have some amazing therapist who adore Jude and really care about him succeeding. I could go on about the different talents they have and how Jude has grown from being with each of them. It is weird for me to think that one day he will outgrow most of these therapies, they have been so vital in his development for so long. We are definitely blessed!  

Friday, April 4, 2014

Where Jude has been

There has been a few articles a media blurps on Jude you can see some of them below:

Jude won the Preemie Power for his age group

 http://handtohold.org/?s=jude
Ages 7-12 months
Jude SJude the Ad”vent”urer
  • Current age: 9-1/2 months old
  • Weight at birth: 4lbs (including 10z tumor)
  • Weeks gestation: 31 weeks 0 days
  • Time in the NICU: 111 days
Diagnosis, surgeries, complications?
Oral Teratoma, PDA, Obstructive thrombus, Progressive Posthaemorrhagic ventricular Dilatation (IVH grade 4s), Choanal atresia, Aspiration pneumonia, Cholestasis, GT/fundo, VP Shunt, Vent Trach dependent, Digestive complications. Removal of Teratoma, plus multiple additional surgeries. Multiple blood transfusions. Lung problems. Development delays. Among other things.

Jude was on 2 of our local TV stations: 

Toddler born with huge tumor makes progress
http://fox4kc.com/2013/09/04/toddler-born-with-huge-tumor-makes-progress/

catchy title huh? haha

Children's Mercy Webpage


A Constant Smile Through All Challenges

http://childrensmercy.org/My_Story/Fetal_Health_Center/A_Constant_Smile_Through_All_Challenges/#.Uz-h1Mevx2c

Fetal Health Center A Constant Smile Through All Challenges


If you are ever at CMH visit the 3 floor (castle elevators) and you will see Jude's picture on the wall :)

 Disciples Today 

It's not the life I had planned
 
http://www.disciplestoday.org/women-today/profiles-in-courage/item-6361-it-s-not-the-life-i-had-planned

jude 4







I wrote a blurb on Jude.






A long waited hello!

I have been feeling for a while that I should really start blogging again. I mean it's been over a year, I kept starting blogs but never finishing them and then I felt there was so much to catch up on I didnt know where to start.
So here I am starting. It wont be a long blog but overtime I will catch you up in how Jude is doing.
In less then two weeks it will be the 2 year anniversary of Jude being home from the NICU. I was recently looking at photos of him 2 years ago and it all just seems so unreal. How is it possible that time can fly by and stand still all at the same time?
Jude is doing great! He still has his trach but no longer has the vent (they took it back, yay!!!) He rarely needs oxygen and has been weened off most of his meds! Jude still is fed by gtube. He loves loves food but cannot swallow. We dont know if this will be a long term thing, a forever thing, a few more months thing. They have done many test and although their is clearly a problem there is no clear cause for him not swallowing and therefore there is no answer on how to fix it. So we are just following Jude's lead and letting him have as many opportunities as he can to taste food and hopefully one day he'll start swallowing :) Jude did have tubes placed in his ears a little over a year ago. We did find out recently that he has slight hearing loss in both ears. They will be replacing the tubes in the next month or so and hopefully that will help clear some things up but we do not know if the hearing loss is permanent damage or not. Speaking of hearing, Jude knows so many signs!!! Because they are still not sure if he will be able to speak (they are leaning towards not fully) we have begun teaching Jude ASL as well as using the ipad for communication. Jude LOVES to sign. He picks up words so much faster then any of us, he definitely knows over a 100 signs.
Jude's appointments have decreased a good amount! Most of the clinics he is followed by only see him once every 6 months to a year. The vent team is now going to see him once every 6 or 8 weeks. Jude has PT, OT, & Speech once a week at the Leann Britain Center. He also goes to "school" there every friday, I stay with him. That is when he has his group therapy. Twice a month Jude has aquatics (he does not go under the water with his trach ;) ) and he also has feeding therapy twice a month, both at CMH. And then 1 a month we have a therapist come to the home.
In the summer we will be traveling to Cincinnati for a consult for Jude. Not that we dont trust our doctors here, we love our doctors but Jude's case is so rare that we are hoping maybe we can find someone who has seen something maybe similar and can give us suggestions. When I spoke with the nurse there to give an over view of Jude's case she said she had never really heard of anything like that. Cincinnati Children's has a world-renowned airway reconstruction team who sees the rare cases.  Needless to say we are praying for answers but I understand that the answer may just be wait. We are grateful they accepted Jude's case. It will be a five days and they will run multiple test and procedures while we are there.
Jude is so smart, no really I know everyone  says that about their own child but Jude really is smart! he can recognize his alphabet and tries to sign the letters (dexterity  at that age is tricky) he is even recognizing some words. he knows his colors, shapes, and numbers. He is very observant and likes to figure things out and perfect things. he is incredibly happy, he has a sense of humor just like his daddy. He always tries to get a people to laugh and loves to show off.

So this post is longer then i thought it would be. I will do my best to add a new post every week even if it's just a short blurb.

Thanks for loving my baby!