Kemett goes to Florida!

I know this post is very late, but I still wanted to tell everyone about our amazing trip to Florida!

After we received Kemett’s diagnosis, initially, we did tons of research.  We found a common denominator- Dr. Jennifer Miller at the University of Florida in Gainesville, FL.  She is an endocrinologist and one of the top researchers in the country for PWS.  We knew if the diagnosis was confirmed that we wanted to see her.

We got in so quickly.  She sees new patients on Fridays.  We had to get a flight in less than a month.  We flew into Orlando on a Thursday night and drove to Gainesville for our appointment.  I was anxious to meet her and see what she thought of Kemett.

After we arrived and put in a patient room, Dr. Miller came in!  It was like meeting a celebrity!  She wanted us to meet another new patient who was 11 1/2 years old.  The other boy wanted to meet a baby.  He was such a polite and sweet boy.  He talked about things he liked to do like ride his bike.  He also had no issues with food – he knew what he could and could not eat and had no behavioral issues.

We then met with Dr. Miller.  She held Kemett while we talked about all the doctors we see and therapies he does.  She told us that he will be in typical classes, he will not food seek or feel hungry one day, he should not have behavioral issues if we treat him how we would treat any of our other kids, he will more than likely be independent and go to college, and he may even get married and have kids one day.  She said that the new research has done wonders for this generation.  We now know that feeding kids good fat, carb and protein diets is important.  In the past kids would count calories and would eat anything that added up to 800 calories.  Now we know that good fats are needed for brain development, so he should have a normal IQ.  She also encouraged me to keep pumping for as long as I can because it is doing amazing things for him.

She said that he may have a harder time learning colors, shapes, etc, but we will push him and he will keep up with other kids his age.  Now that he is on GH, he should start meeting typical milestones for kids.  We will work with him more than we would a typical kid, but he should meet milestones and not be behind.

Andrew and I were already hopeful that Kemett would do great things and that we would help him in anyway we can to get him there, but this was such great news.  We know that he will still have struggles in his life and he will have to work harder than his peers to achieve his goals, but we hope that we can provide Kemett with such good structure and an environment that he can thrive in.  It is going to be hard work and it is hard work right now, but its all worth it.  I mean who wouldn’t do this for this kids.

Since this meeting, I have met so many other parents with older kids with PWS and they are all doing great.

I think that Andrew and I have a healthy and positive outlook on our situation, which is not the case for all families.  I don’t want anyone to think that things are easy breezy because they aren’t but the things we deal with for Kemett are the norm for us now.  We just adjusted our thinking and how we pictured our lives for Kemett and it has brought us so much joy.

We did have an endo in League City we were seeing and who prescribed GH for Kemett, but we have now decided to exclusively see Dr. Miller.  This means I will get to know Gainesville a lot better!  Maybe we can take Kemett to a football game at The Swamp!

After our visit with Dr. Miller, we drove to St. Augustine, Florida for some relaxation!  Below are some pictures of our trip.

Love,

The Demands

 

 

Kemett's First Flight

Kemett’s First Flight

The Swamp

The Swamp

Andrew and Kemett

Andrew and Kemett

Castille de San Marcos

Castille de San Marcos

Castille de San Marcos

Castille de San Marcos

St. Augustine

St. Augustine

The Beach

The Beach

In St. Augustine Soaking up the Sun

In St. Augustine Soaking up the Sun

The water was cold!

The water was cold!

Kemett loved the Beach!

Kemett loved the Beach!

Sweet baby feet

Sweet baby feet

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Kemett is 7 Months!

Hi Everyone,

Kemett is 7 months today!  Here are the highlights from this month:

  • He is starting to roll from stomach to back and then back to stomach!
  • He found his feet and is loving them
  • He can do slightly supported sitting and can bear weight through his arms
  • We are also doing more crawl positioning and he can hold himself up
  • We can tell he really wants to move.  When we put him on his tummy he eventually does an entire 360!
  • He screeches and talks loudly
  • He loves petting Kona and Ginger and squeals at them!
  • He is eating solids 2x per day- he loves summer squash and avocado
  • He is working on drinking from an open cup
  • He met his Great Grandma and Grandpa Demand and his Great Aunt Peggy
  • He now has to wear a hip brace because his left hip socket was not forming correctly.  The orthopedic doctor said that it was still early but to be safe he needs to sleep in the brace.
  • He’s been on HGH for 5 weeks!
  • He celebrated my birthday
  • We started working with a nutritionist who specializes in PWS

Kemett is really growing up.  He is getting so much stronger and more animated!  We can really tell a difference since he started growth hormone therapy.  He is more alert during the day.

I feel like this past month has been a quiet one- not as many doctors.  We did travel to Houston to see his endocrinologist and we decided that we are going to go to Florida to see Dr. Miller and not continue seeing this doctor.  We want what is best for Kemett.  Next Monday there will be a post about Florida- finally.

I also hope to blog about the nutritionist and some things that Andrew and I are doing to change our diet.

SAVE THE DATE- We will be hosting a walk for Kemett to raise money for the Foundation For Prader-Willi Research on September 13, here in our neighborhood.  I will do a blog post with more information next month.  It is called One Small Step!

Thank you all, as always, for all of your support!  Enjoy the pictures below.

Love,
The Demands

 

7 Months!

7 Months!

7 Months!

7 Months!

7 Months!

7 Months!

I'm 7 months!

I’m 7 months!

I love eating!

I love eating!

Doing my 360's with the dogs

Doing my 360’s with the dogs

Meeting Great Grandma and Grandpa Demand

Meeting Great Grandma and Grandpa Demand

Dad and I doing guy things.

Dad and I doing guy things.

Looking grown up!

Looking grown up!

No more car seat in stroller!

No more car seat in stroller!

Hair

Hair

Sitting Up

Sitting Up

Reading my book.

Reading my book.

Jeans for Rare Disease Day

Jeans for Rare Disease Day

 

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!