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!

 

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Kemett is 8 Months!

Happy May everyone!

This month is Prader-Willi Awareness Month!  Will you participate in a month long challenge with us? Pledge to eat well for the month, or exercise daily. By sacrificing the sweets or promising to sweat, your joining our friends with PWS in things that they have to do every single day. Andrew and I have changed our diets over the past couple of months for Kemett- removing processed foods, added sugars, and hormones in meat. So, I pledge to exercise daily with and for Kemett! Let us know what you will be doing or share it on your facebook page!I hope to update you a little more often on the blog about PWS and Kemett!

Kemett has had a pretty good month.  Here are some highlights:

  • Kemett has 4 teeth!
  • He graduated from the helmet last Wednesday.
  • He is using a straw cup now!
  • We changed Kemett’s schedule, so he eats three meals a day in his high chair and has two snacks.  He now goes to bed at 7:45 each night!
  • We think he has some food allergies, so we have removed Dairy and Soy from his diet and mine as well
  • We worked with a PWS nutritionist from California this month and learned so much about Kemett’s nutrition!
  • Kemett took a road trip to Atlanta, GA driving through Texas, Louisiana, Mississippi, Alabama and Georgia.
  • He is 16 lbs 3 oz and 27 inches long!

Kemett also had a sad month.  We experienced three deaths- Andrew’s grandfather, Lyman Demand, my dad’s brother, Gerald Fredrick and one of Kemett’s special friends with PWS, Violet Hasenmyer.  We love all of these individuals and our thoughts and prayers are with their families.

Below are some pictures from the past month.

Love,
The Demands

Kemett is 8 Months!

Kemett is 8 Months!

Kemett is 8 Months!

Kemett is 8 Months!

Kemett is 8 Months!

Kemett is 8 Months!

Loves his high chair!

Loves his high chair!

Headed out on the town!

Headed out on the town!

Tummy Time!

Tummy Time!

Sipping from a real straw cup!

Sipping from a real straw cup!

Happy Easter!

Happy Easter!

My diploma! No more helmet!

My diploma! No more helmet!

 

 

 

 

 

 

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