PWS Awareness Month – Day 4

Hi Everyone,

In February we went and visited Dr. Miller.  We had a great trip, and even had a chance to go to the beach!

Dr. Miller thought that Kemett looked great.  His BMI was high but once she saw him she was happy with his weight and height.  Kemett’s IGF-1 levels are high right now, but there is no where for us to cut carbs and she didn’t want to lower his growth hormone either. At the moment, they don’t know much about prolonged high IGF-1 levels.  There are some studies that show it could cause colon cancer when he is an adult.   So right now we are keeping his growth hormone where it’s at and will continue to monitor through blood checks.  She thinks it will lower naturally over time.

We are going to start a therapeutic listening system next week, recommended by Dr. Miller.  We have purchased the headphones and our occupational therapist is getting trained this past weekend to get us started.  This will help increase Kemett’s processing time.  We are looking forward to trying it and will try to write a blog post to explain this more next week!

Kemett’s anxiety has started to increase, not about food but just about things in his life.  I am working with him to do deep breathing, progressive muscle relaxation and yoga.  I want to help him build the tools he can use when his anxiety gets high.  I’ve also made social stories especially when we leave town so he knows what we will be doing.  He’s a homebody (wonder where he got that from!).

Dr. Miller was not surprised to hear that Kemett’s cognition is with his peers or above!  He is one smart kid!

Overall it was a positive visit, and we will see her again next year.

We drove to Florida this year, so we got to stop and see my grandma to and from, and we spent a few nights in Destin, Florida.  It was a nice break for our normal routine!

Please let us know if you have any questions!  Enjoy some pictures from our trip below!

Love,
The Demands

 

Destin Beach

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Enjoying our trip!

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Kemett is 20 Months!

Hi Everyone,

I know it has been a while since our last update.

We have had some fun times, as you will see in pictures.  We went to Denver in January to visit our best friends, the Chugers!  Kemett got to play in snow for the first time.  Kemett got his first therapy bike, got to see Great Grandma Demand, and went to his first concert- Wanda Jackson at the Lonestar Roundup!

You may also see in pics that Kemett got a play kitchen.  There is no food, just plates, pots, pans, spoons, etc.  Maybe next month I can talk more about the kitchen.

February was a busy Doctor month for us so here is an update:

  • ENT- We discovered Kemett had fluid in his ears. His ENT put him on nasonex and within 6 weeks it was cleared up.  We learned his tonsils and adenoids are still small.  He also had a hearing test at our follow up and he had perfect hearing!
  • Pulminology- Dr. Kang put Kemett on singulair to help with the fluid in his ears and to make sure he was in the best condition for his sleep study he had in March.  We got great news- Kemett’s Sleep Apnea is now MILD!  This was such amazing news- we have worked hard this past year to figure out all of Kemett’s health issues and get them under control.  Feels good to see they worked.  And is nice to sleep through the night without beeping noises.
  • Dentist- Kemett’s teeth look great!
  • GI- Dr. Scheimann thinks that Kemett looks great.  They were happy with his diet and decided it was time to get him off of his elecare formula.  This was such great news!  His scope in December showed his Eosiniphilic Esophagitis had improved.  We will do another scope in the next month or two to see how he is doing.
  • Allergist- We did skin testing and blood work.  We were hoping to add soy and/or almonds but unfortunately, Kemett is allergic to both still.  We were able to introduce beef and corn.
  • Nutritionist- Thanks to Melanie Silverman we were able to wean off of elecare Jr.  We have milk options that are enriched- rice, coconut, hemp and flax.  He is also on a calcium supplement, multi vitamin, and probiotic.
  • Therapies- Kemett is not speaking much, but signs what he needs.  He also took 5 steps a few weeks ago!  He is doing so well in therapy!

Endo- Dr. Miller- This is the big one and gets it’s own special paragraph.  We did his routine blood work in February and his IGF-1 Levels were high, 258, which means he has moved into the next phase of PWS, 2A.  Typically in this phase kids start gaining weight quickly because their metabolism slows down.  It can be controlled by diet.  Our nutritionist and Dr. Miller agreed that his diet is perfect right now, low carb, high fat and protein.  They also felt that weaning Kemett off of elecare might help.  We will retest his blood next month and hope his levels will lower or even out.  For those interested in nutritional phases and IGF-1, please read Dr.Miller’s article here.

Next Month is Prader-Willi Awareness Month!  I hope to answer people’s questions about PWS so please feel free to ask us anything.

Thanks again for all of your support!

Love,

The Demands

 

Enjoying the Snow in Denver!

 

Kemett and Grandma Demand

Kemett and Grandma Demand

Visiting Dr. Scheimann

Mardi Gras

My new Kitchen!

Spring fun!

Sleep Study

Parents just don’t understand

Easter

My new therapy bike!

Lonestar Roundup and first concert!

Lonestar Roundup

Lonestar Roundup

My new chair!

 

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!

 

Kemett Goes to Florida and Houston (Again!)

Hello everyone!

Two weeks ago, we took off for Florida for a family vacation and another trip to see Dr. Miller (PWS Endo).  After that, we went to Houston to see Dr. Scheimann (PWS GI).  Here is a recap of each trip.

FLORIDA:

We spent the first three days of our trip on Sand Key near Clearwater Beach.  We had a great time relaxing, going to the beach and enjoying some good cuban food and fresh seafood.  On our first day we made an afternoon trip to Dunedin, one of the oldest settlements on Florida’s West coast.  It was settled by Scottish immigrants in 19th century.  It is also home to Florida’s oldest brewery.  Saturday morning we went to Ybor City and learned about how the cigar industry grew in Florida.  We enjoyed some great cuban food and learned about all the immigrant groups that settled in this area.  Sunday, we had the pleasure of meeting two more PWS families from Clearwater!

After three days at the beach, we headed to Gainesville to see Dr. Miller.  It is always such a joy to see Dr. Miller.  She is so happy and inspiring!  She had nothing but good things to say about Kemett.  She was impressed by his strength, happy with his growth and igf-1 levels.  We will be putting Kemett on B-12 shots monthly because his levels are low.  We are also going to try him on L-carnitine.  This is a standard supplement our lovebugs take for muscle development and energy.  Kemett has a ton of energy, so we are just going to test it for 2 weeks and see if he does ok on it!  I’m worried that I will have a baby who won’t sleep for 2 weeks.   She felt good about his therapy and speech.  We will also end up working with Melanie Silverman again now that we know Kemett’s allergies (see below).

She only wants to see us once a year since we live far away.  It is always such a positive and motivating trip.  Kemett is doing so well and he works so hard!  Glad it is paying off!

HOUSTON:

Once home, Kemett and I turned around and drove to Houston to see Dr. Scheimann.  She is from Johns Hopkins, but comes to Texas Children’s Hospital every other month.  She was shocked when she saw Kemett and commented on how great he looked!  She thought his skin was perfect and his growth had been great.  I was a little nervous about this visit because through email she has been hard to read.  I let her know that Kemett is doing great with chunks of food, and she said that was a great sign that his esophagus has healed!

Kemett had a skin test done last month at his allergist’s office that shows he is potentially allergic to: Dairy, Eggs, Soy, Wheat, Corn, Beef, Seafood, Shellfish, and Peanuts.  WOW.  I will say that none of this phases me.  We will figure this out!

We will continue to work with GI and the Allergist to figure out when we can introduce allergens that come out negative in blood work.  It will be a process.  He will more than likely have another endoscopy later this year.

Everything was positive from her visit; Dr. Scheimann said that he might end up only being allergic to one or two of these things.  She let us know that little ones with Eosinophilic Esophagitis often heal well, but there is a chance of irritation again when they are little older.  We will just have to be careful with foods and work with these two doctors closely.

Another positive note is that she only wants him on formula for 6 more months!  We moved to Elecare Jr and found an unflavored kind.  We did not want him to go on vanilla flavored formula that would be full of sugar.  After that, we will make sure he has enough protein and will phase him off of it.  So excited about this!  Another reason to work with Melanie, so we can make this a reality!

OVERVIEW:

These visits were great.  They help us to continue to stay positive!  We know there will be roadblocks, there have been a ton so far, but we know we can make it through.  I mean, Kemett does it all and with a smile!  Next post- Kemett will be 1 year!

Enjoy some vacation pics below!

Love,

The Demands

 


View from room.

View from room.

 

First morning at the beach.

First morning at the beach.

 

Kemett not liking the sand.

Kemett not liking the sand.

Dunedin Brewery.

Sunrise.

Sunrise.

 

Kemett loves Museums!

Kemett loves Museums!

 

Ybor City

Ybor City

 

Mama and Kemett

Mama and Kemett

 

Frenchy's

Frenchy’s

 

We had to visit Hulk Hogans store...

We had to visit Hulk Hogan’s store…

 

Beautiful day!

Beautiful day!

 

Loving the beach!

Loving the beach!

 

Playing in the sand

Playing in the sand

 

Sand Key Beach

Sand Key Beach

 

Sand Key Beach

Sand Key Beach

 

Fun in Hotel

Fun in Hotel

 

Dr. Miller

Dr. Miller

 

Flight home.

Flight home.












Kemett is 11 Months!

Hello Everyone,

I can’t believe that Kemett is already 11 months!  I have been thinking about life a year ago.  We were anticipating Kemett’s arrival by getting his room ready, washing baby clothes and cloth diapers, and nesting.  We were resting and watching the Sopranos (Kemett’s favorite show :-)).  We were ready for whatever life was about to hand to us, and I’m so happy we were prepared with an open mind.   During those long days spent in NICU, all I did was think about that room we had made for him and those cloth diapers I wanted to put on him (I was so tired of leaks and blowouts in disposables in the nicu), at home.  I just wanted to be home, away from the strangers, the wires and cords, and separation from Kemett.  We wanted to be able to sit on the couch, watch football, and hold our baby while he slept. ( Although, Kemett had a great view of the stadium and tower from his bed, it still wasn’t the same.)  We wanted the comforts of home; to build our family and get to know Kemett in our own way.  We were lucky to only spend 3 weeks in NICU.  We were lucky we could take Kemett home.  I envy those with easy deliveries and who get to take their babies home, but I wouldn’t change our experience for anything in the world.

Here are some highlights from this month:

  • Kemett weighs 18 lbs 6.5 oz and is 29 inches long!
  • Kemett can sit up straight and get into a crawling position.
  • He got his 7th and 8th teeth!
  • He had his second sleep study (they do one 6 months after being on growth hormones).
  • We visited his Nanny at the LBJ Library to see their 60’s exhibit.  Kemett is ready to read the Feminist Mystique.
  • He got a pair of Sure Steps (ankle foot orthotics) and his first two pairs of shoes!
  • We participated in his first 4th of July Parade in Belterra.
  • We had Louisiana family in town visiting, my dad’s brother, Uncle Ricky!  This meant we ate very well for that week!
  • Kemett is eating more chunks.
  • Kemett sat in the tub independently
  • Kemett swung in a swing for the first time
  • AND he rode in a shopping cart for the first time!

Next month I will have more medical updates.  He is seeing a lot of doctors, including Dr. Miller again and Dr. Scheimann.   I also look forward to talking about all of Kemett’s accomplishments this year.

Remember, One SMALL Step Dripping Springs is on September 13!  Visit our personal fundraising page for more info: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

Love,
The Demands

 

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

First time swinging!

First time swinging!

Family pic at the park!

Family pic at the park!

Kemett Sitting!

Kemett Sitting!

Fourth of July!

Fourth of July!

First time sitting in shopping cart!

First time sitting in shopping cart!

Kemett and Nanny with LBJ!

Kemett and Nanny with LBJ!

Kemett and Uncle Ricky!

Kemett and Uncle Ricky!

Sitting independently in bathtub!

Sitting independently in bathtub!

Sure Steps!

Sure Steps!

Kemett loves his shoes!

Kemett loves his shoes!

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 5 Months!

Hi Everyone,

Kemett is 5 months and doing great!  Here are the highlights of this past month:

  • Kemett has started completing his bottles
  • He is pulling up on his forearms in tummy time and trying to roll
  • He laughed for the first time
  • Kemett loves to talk
  • He grasps his toys
  • Had his first road trip to Kingwood and League City
  • Kemett had a sleep study
  • We flew to Florida to see Dr. Jennifer Miller at The University of Florida (next post)
  • Kemett flew for the first time
  • Kemett saw the beach
  • He loves to pull his tube out!
  • I have had a busy month- I see about 12 doctors and have three therapists!  I hope it slows down soon.
  • I am 25 1/2 inches long and 15 lbs 3.5 oz
Kemett is 5 Months

Kemett is 5 Months

Kemett is 5 Months!

Kemett is 5 Months!

Kemett is 5 Months!

Kemett is 5 Months!

Cheering the Longhorns!

Cheering the Longhorns!

I work out!

I work out!

4 Month Shots!

4 Month Shots!

Who Dat?!?

Who Dat?!?

First bottle I completed!

First bottle I completed!

Getting ready to taste some blueberries!

Getting ready to taste some blueberries!

Sleep Study!

Sleep Study!

I love my blueberries in mesh!

I love my blueberries in mesh!