Kemett is 1!

Hi Everyone,

So this is very late!  I know Kemett is now 15 months but still wanted to do a 12 month update.  Pretend it is August 25, 2014!

  • Kemett is 31 inches long and 20 lbs 15 oz
  • He is still trying to crawl and is pulling to stand
  • He first molar is coming in!
  • He visited Clearwater Beach and Gainesville, Florida to see Dr. Miller
  • He went to Houston to see Dr. Scheimann
  • Kemett’s sleep apnea is worse but it is because of his low tone, reflux and maybe asthma
  • Kemett is starting on an inhaler
  • We visited the ER because Kemett had retractions when he was breathing.

Kemett is doing really well!  As the last post said, he had great doctors visits.  We did go to the ER after we got back from Houston and in our pulminary follow up, Dr. Kang let us know that he thought Kemett had asthma, not pneumonia.  He put Kemett on an inhaler and then told us that Kemett would probably be sick at least once a month through viral season.  We are so lucky to have some great doctors on our side!

But because Kemett was sick we cancelled his big birthday party and celebrated only with the grandparents.  It was a fun time!  We looked at old pictures, ate a cute water melon treat and opened gifts.

My next posts will update you all on our One Small Step Walk, our trip to New York for the Foundation for Prader-Willi Research Conference and hopefully just an update on Kemett now!

Love,

The Demands

 

Kemett is 1!

Kemett is 1!

Birthday fun!

Birthday fun!

His birthday treat!

His birthday treat!

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Happy Birthday!

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Happy Birthday!

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Happy Birthday!

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Happy Birthday!

 

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Kemett is 6 Months!

Happy Mardi Gras!  Kemett turned 6 months last Tuesday.  Time has definitely flown by.  It seems like ages ago we were in NICU wondering if we would ever get to  leave.

Kemett is doing so well!  Here are some highlights from this month:

  • Kemett went to Louisiana for the first time!
  • He had a procedure to look at his airways and went under anesthesia
  • He started Growth Hormone Therapy!!
  • No More NG TUBE!!
  • He now has a pulse ox at night
  • We celebrated Andrew’s birthday
  • Kemett started solids and loves them!  His first food was avocado
  • He can hold his head up
  • He rolled from his back to his left side
  • He can sort of prop sit
  • We are working on the crawling position
  • I am 26 1/2 inches long and 15 pounds 10 oz

Kemett is just the happiest baby!  He is smiling so much, giggling and chatting with us.

I’m not sure if you told me even 5 months ago that his NG tube would be out and he’d be sitting in a high chair trying solids at 6 months, that I would believe you.  After we saw Dr. Miller, we tested for two days without the tube and he ate all of this food by bottle!  We were cleared by both Dr. Miller, his GI doctor and speech pathologist!  It has been so nice to be off of that!

He has also grown used to his helmet!  His head is growing and reshaping.  We hope to have it on for another 5 weeks max, so we are over halfway there!  We get tons of complements when out and about.  He is wearing it because he has a flat spot on the back of his head.  This is used to help round it all out and make it symmetrical.

The past two months have been crazy, seeing tons of doctors.  I think we will slow down just a bit now.

We found out after the sleep study that Kemett has severe sleep apnea, especially on his side and back.  On his stomach he has mild sleep apnea.  This is because he has a very small jaw and the jaw is pushing his tongue back and blocking his airway.  We met with a cranio facial plastic surgeon who decided he wanted to check Kemett’s airway to make sure nothing else was causing the apnea and then decide if he was a candidate for a jaw distraction surgery.

Once we found out he had severe sleep apnea, we called all of his doctors to see if it was safe for him to start GH therapy.  It was getting delivered to the house and I didn’t want to start him on anything that could be dangerous.  We found out it was dangerous to start him on this until we knew the cause of the sleep apnea.

We are happy to report that during the airway evaluation he looked good.  They also manipulated his jaw to see if he was a candidate for jaw distraction surgery.  They said at this time they did not feel he needed it.  We will deal with his sleep apnea by having him sleep on his stomach.  We will also continue to be monitored by the cranio facial plastic surgeon, ENT and sleep study doctor.  He will also be hooked up to a pulse ox machine at night to monitor him.  After this procedure, we were finally given the go ahead to start GH therapy.  Which is huge!  We have been waiting to start this for a while now and are so happy for Kemett.

I hope to post a little more this next month.  I apologize for the lack of posts this past month.

Enjoy the pics below.

Love,
The Demands

6 Months!

6 Months!

I can lift my head!

I can lift my head!

6 months!

6 months!

Big Smile!

Big Smile!

Bumbo time- holding my head up!

Bumbo time- holding my head up!

Dad's birthday!

Dad’s birthday!

Dad's Birthday!  Twisted X Brewery

Dad’s Birthday! Twisted X Brewery

Sweet potatoes!

Sweet potatoes!

Love being in my high chair!

Love being in my high chair!

Who is that cute baby?

Who is that cute baby?

Love GG!

Love GG!

Saying Aloha to my Parrain and Aunt Rea!

Saying Aloha to my Parrain and Aunt Rea!