PWS Awareness Month- Day 2

Hi Everyone,

There are multiple stages/phases of Prader-Willi Syndrome.

Stage 1

In the first stage, infants with PWS are hypotonic or “floppy”, with very low muscle tone. A weak cry and a poor suck reflex are typical. Babies with PWS usually are unable to breastfeed and frequently require tube feeding. These infants may suffer from “failure to thrive” if feeding difficulties are not carefully monitored and treated. As these children grow older, strength and muscle tone generally improve. Motor milestones are achieved, but are usually delayed.

Kemett was born with low muscle tone and a failure to thrive.  He barely moved in NICU and started Physical Therapy immediately!  We worked on range of motion exercises and helping him strengthen his neck.

He also had an NG tube for the first 5 months.  He was always able to suck on a bottle but would tire out quickly and not be able to complete them.  It’s hard to believe that the first few months of life we were excited when he’d drink 5 extra mL!  He could not breastfeed, and we did try many times, so I pumped exclusively for 9 months instead.

When Kemett was born he did not cry, nor did he cry the first night we had him in our room.  I remember envying the mom’s in their rooms with crying healthy babies.  I thought how they might be tired of that cry or frustrated by it, and all I wanted was to hear Kemett scream and cry.

Kemett has also been delayed in meeting milestones, but more on that in another post!

Remember, we love questions!

Love,

The Demands

My PT with Dad

My PT with Dad

My first smile

My first smile

I workout!

I workout!

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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!

 

Happy New Year!

Hello everyone,

As I write this, we are only a few hours away from the end of 2014 and the beginning of 2015.  There have been times when this year dragged on, and now, looking back, it feels as though it flew by.  Kemett has done so well this year and come leaps and bounds from where he was a year ago.  This year, I never thought Kemett would roll, sit up, crawl, stand or cruise, and he has accomplished all of these!  I wasn’t sure he would get off of his ng-tube and eat real meals in his high chair at 12 months, but he did it and faster than we expected.  The little baby who wouldn’t babble said pumpkin in October!  The baby that would not cry, and if he did it wasn’t for long, can now cry with the best of them when he wants!  He has truly turned into an amazing toddler right before our eyes.

Kemett is 4 Months!

Kemett at 4 Months!

Kemett is 16 Months

Kemett is 16 Months

None of this was easy for him.  Kemett works harder than anyone I know, everyday.  He has SIX therapies a week- occupational, speech and physical.  And due to his low muscle tone, it takes him longer to complete a task because he has to think about each muscle he is going to use- but give him time to think it out and he can do it.  When he is around his peers, I can tell he wants to walk and run with them, and he does his best to keep up.

Kemett is so social and friendly.  He wants to say hi to every person we pass and may even try to give them a hug.  It makes hard days easier when you see his sweet smile followed by the best hug ever!

He is curious and interested in what is around him.  He is constantly analyzing and exploring.  He loves books and being read to each day.

Kemett keeps us busy with 13 doctors in three cities.  But these doctors have discovered things about Kemett this year that have made his health improve greatly- allergies and asthma at the top of that list.  His doctors are amazing, and I’m not sure what we’d do if they didn’t seem to care about Kemett as much as we do.

And because of all of these doctors and PWS, we traveled to Florida twice and to New York.  We love to travel and this helped us have family time this year that was much needed.

And as in true Demand style, he is finally dancing!  To just about anything, except his dad’s heavier rock.  Although, sometimes it looks like he is head banging, so we better watch out.  I think he will be a ballet dancer.  Although his muscle tone may be low, he is quite flexible and I’ve already seen him doing some arabesque’s.

Happy Holiday's!

Happy Holiday’s!

Hopes and Dreams for 2015

That Kemett will walk and begin to talk more.  I want him to continue to be his happy social self.   I know his life won’t get easier, but we are doing everything we can to make sure he has the best life possible and it’s as typical as we can make it.

I am going to Meal Plan, finally!  I will share throughout the year how things are going with that.  I also want to go outside more and take more walks with Kemett.  We spent way to much time indoors this year due to therapies and illness.  I think he and I are both ready to explore more.

Please continue along on this journey with us into 2015.  This blog will continue to be a place that will explain what is going on with Kemett.

HAPPY NEW YEAR!

Love,

The Demands

 

Kemett is 10 Months!

Happy July Everyone!

Kemett turned 10 months on June 25th!  He is doing great and has made big strides this past month.  Here is the update:

  • Kemett started babbling dadadada, mamama, nanana and is “talking” when he plays
  • Kemett is sitting straight up independently!  This is huge and a milestone I never thought we’d reach.  He did this while we were out-of-town with his cousin, James, who has been sitting straight up for a while.
  • Kemett is also getting on all fours and rocking!  He is trying so hard to figure out how to crawl!  He does an army crawl and likes to go after the remote, paper and anything else that is not a toy.
  • We saw an allergist and we can start adding in food again.
  • He had his first smoothie!  He loves them and it helps build his muscles in his mouth.
  • He also has had puffs now to help with chewing.  He’s doing great on this.
  • He is eating all his meals and snacks in his high chair now.  No more bottle!
  • We are doing chunks in purees and he’s handling them so well.
  • He went to Lake LBJ for the first time!
  • Celebrated his first father’s day.
  • Traveled to New Iberia and Vacherie.

MomMom Shirley died on June 5th, she was my dad’s stepmom, and has always been my grandmother.  She will be missed.

We visited the allergist.  She met with us for a long time and asked a ton of questions.  She is not convinced of the EOE diagnosis.  We will be doing skin testing at the end of the month and will do further blood tests on what comes back positive.  She is letting us introduce new foods again into Kemett’s diet, which has been wonderful.  It will probably be a long process to find out what exactly is going on, but we are fine taking it one day at a time.

Kemett really is doing so well.  His speech therapist has said he is very close to eating like a typical baby his age and he is progressing through everything exactly like a typical baby would  His babbling is close to a typical baby, although he is behind there.  Occupational therapy says he is a month or two behind typical babies.  And he is a few months behind on physical therapy but wow, he has made such great progress.  We know that Kemett will have therapy for years to come.  He loves his therapists!  They have taught us so much.  I work with Kemett when they are not here, which is during every playtime and meal time.  We celebrate all of his milestones as they come, on his time, because he works so hard to meet each one!  I am so proud of him!

We also want to thank everyone who has donated or set up a personal page for our One Small Step Walk!  I will do a post about that again soon because we have so much done now!  If you are interested in donating you can go here: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

As always, thank you to everyone for your continued support, prayers, and love!  Enjoy the pictures below!

Love,

The Demands

Kemett is 10 Months!

Kemett is 10 Months!

Kemett is 10 months!

Kemett is 10 months!

Kemett and James!

Kemett and James!

We love GG!

We love GG!

At the Lake!

At the Lake!

First Lake Trip!

First Lake Trip!

Happy Father's Day!

Happy Father’s Day!

Mama's Rainbow Bright Blanket

Mama’s Rainbow Bright Blanket

Sitting Straight!

Sitting Straight!

On all fours!

On All fours!