Kyle's NICU Story in Pictures

Thursday, July 31, 2008

Testing & Doctor Updates

The swallow study went great.  I had an amazing friend offer to go with me and I gladly accepted!  b/c of a story a friend shared with me sometime ago I was very scared of kyle's testing yesterday.  Once the study began it was pretty much over  - he had to swallow barium 14 times - they let me feed him while he sat in an infant seat - and then said they felt confident that he was not aspirating!  Great news!  Then they had me feed him the rest of the barium while holding him and they did an upper GI to see if he was refluxing.  No sign of that either! 

so we had a great morning!  The test was easy, painless (probably didn't taste too good) and went very well.

The speech pathologist that did the testing had interviewed me about kyle's feedings prior to the test - afterwards she recommended going ahead with speech therapy.  

Next we went to Neurology.  We switched neurologist b/c I did not like the lack of detail and explanation the other doctor gave.  well - funny story - the fellow (is already a pedi and training to be a pedi neurologist)  came in to do the preliminary work of the visit.  and it was the same guy that came to us to answer questions in the NICU when kyle was having seizures.  This guy, i'm sure, is brilliant , but was really lacking in bedside manor.  when we met with him back in the NICU he had not looked over kyle's EEGs - didn't even know how many he had.  When I continued to ask questions that he did not know the answers to (only b/c he had not looked at kyle's info) he proceeded to tell me that there was no way he could tell me what was wrong with kyle unless he could look through every DNA stand and there was no way but he know there was a reason that my body "spit him out" early and you can "put a new monitor on a broken computer but the computer is still broken."  his face was so red and he was so flustered - the student with him took over and tried to answer some of my questions.  all of the nurses new us and new I was going to ask 100 questions so they were all standing behind him trying not to crack up laughing!  one of our NNPs even waked in and confessed that she told them I would have tons of questions and to be prepared.  she walked in during that conversation and left immediately laughing b/c it was obvious they were to prepared for a high strung mommy that pays attention!

it ended up being funny - i knew he wasn't being mean and I know he couldn't tell the future - he was just so flustered!

anyway - he was my fellow again in the office yesterday!  Still no skills!  but Dr. Mancias is who we saw - he is amazing!  He explained SO MUCH to me.  here are the highlights.
He thought kyle looked great!  He was impressed by no seizures, no meds, and He loved how attentive kyle was and that he could sit, roll, track with his eyes and chew on his feet!

He taught me some about DEHSI lesions which is what kyle has been diagnosed with covering 2/3 of the white matter of the brain.  this is where the MRI (a very new kind of MRI) detects high frequency signals suggesting that there is more that what they want water movement in the brain - suggesting that the matter is less dense that it should be.  however - this MRI has not been around long enough to have followed any babies out a few years to know what this means.  He said really - they just started noticing this with the new MRIs.  He did not know.  However he did feel like kyle's condition was not static and he would continue to progress.

Regarding the reflexes that have not integrated in kyle.  The only one he commented on was the quivering. you notice this more when he is tired.  You can see it in his chin and when he stands and sometimes sits.  He said this is caused by immature milenation.  There are milenation cells that cause the milenation and premilenation cells that produce the milenation cells.  (can you believe they know all this!)  These premilenation cells can be damaged in a brain bleed.  Kyle has one small area where the blood came out of the ventricle - this is called PVL - paraventricular leukomalacia.  This is the concern for the possible damage to the premilenation cells.  The milenation needs to mature and to do that he needs these cells to be whole and healed.

If kyle continues to progress like he is and meet milestones ( which he is!!!) then we will do another MRI at 2 to see how his milenation is progressing!  Then usually at 4 years old they like to do another MRI b/c most milenation is complete by this time.

Dr. Mancias was amazing - extremely intelligent and a great communicator.  I took in tons of information and tried to retain as much as I could.  I hope that I am sharing with everyone accurately.

We will see him again in 3 months!  Thank you for praying for kyle.  I believe God is healing him.

I have attached some videos and here are some other updates for kyle:

- he cut his first tooth on july 28th
- he can roll from back to front over both sides - usually to the left
- he is sitting with boppy support or sitting between my legs
- he is on a great schedule of breakfast at 7:30 and 2 hours awake time - then a 2 hour nap, then lunch and a 2 hours of awake time and another 2 hour nap, then plays for an hour or so and then dinner, then bath and more play (and still a 20 min cat nap or so...) then bed time bottle and off to bed at 7:30.

- Kyle LOVES attention, LOVES his big brothers, LOVES to talk and sing songs with motions, LOVES bath time and kicking in the tub!

- Kyle is working on left side strength, sitting independently, rolling front to back, holding toys in his hands, babbling with consonants (babababa, mamamamama), appetite, eating cereal.

He is amazing and we really do have a blast with each play time, each therapy session, and he even loves his massages now!  


Anonymous said...

Yeah!!!Ata boy, Kyle!!

We will keep praying and we know that God will keep the healing going.

Myron & Christina

Tabaitha Kaye said...

Way to go Kyle. I love hearing about his milestones. Thank God for giving you a Neurologist that you like and who explains everything to you. As always, I will continue to pray for all of you and Kyle's development. Much love!

hallegracesmama said...

I am so glad to read about Kyle and how wonderful he is doing! He is so BIG! I remember Halle had tremors that worried us for a long time. The neurologist told us it was due to the immature nervous system, and she did eventually outgrow them.

Anonymous said...

OMG this so wonderful! yea!!!!
And yea for you mama!

Adam & Andrew said...

What a wonderful report!!

Jay said...

Glad to hear Kyle is progressing so well!

Dr. Mancias is AMAZING. He is truly the best of the best! I am so glad you guys found him....

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!