PWS Awareness Month -Day 5

Hi Everyone,

First, I want to say Happy Birthday to my mom!  We love you so much!  Thank you for all you do for us!

Today I thought I’d give you a quick update on the rest of Kemett’s doctors:

Dr. Scheimann: We saw her in December.  Kemett is looking good but we won’t know what’s really going on with his EoE until we do a scope in June.  We haven’t been able to get a scope done in almost two years.  Kemett has been off of nexium twice a day, and we hope everything looks good to take him off of it completely.  He’d go on zantac or something like that if this is the case.  His eczema has been so much better last summer and even now as it’s getting hot (that’s when it’s worse for him), so I hope that’s a good sign.

Dr. Kang: We have our sleep study in June.  It got pushed because Kemett got sick.  You do not want to have a sleep study when you are congested because it will not be accurate.  Last year Kemett’s study showed mild obstructive apnea due to his low tone in his mouth.  Kemett ended up having fluid in his lung and a partially collapsed lung.    Our kids can have such a high pain tolerance and hide illness.  We cannot thank Dr. Kang’s office enough for their help on the phone and in their office as Kemett became scary sick.  It came out of nowhere, but now he’s doing great!

Dr. Kim (dental): Kemett’s teeth are looking great so far.  We are getting sealants put on in June when he goes under for his scope.

Dr. Varshney: Kemett’s egg levels went down, and soy and some treenuts are lower.  If he scopes clean in June we might get a chance to trial some new foods!  Everything else is very high and could be anaphylactic if he consumed, so we must continue to be very careful.

Dr. Zapata: Kemett’s tonsils are tiny and looking good still!  We will talk to her again after the sleep study results come in.

Dr. Kelly- He is the cranial facial plastic surgeon that we see every two years.  He said Kemett’s jaw is still looking good and no need for surgery anytime soon.  So he is now an as needed doctor!

Dr. Busse- Kemett’s eyes looked good when we saw Dr. Busse last year.  Kemett does cross in with his right eye occasionally but it’s normally when he’s extremely sick or tired.  Dr. Busse said he’d need to be doing this 20% of the time for us to be concerned and he does not.

Dr. Sargent- Kemett’s hip was a little tight on one side, so we have been working with PT to do some stretches to help his hips.  We will go back in a couple of months to have another xray done.

Overall, things are looking good.  Kemett has a co-case scheduled in June for his upper endoscopy with Dr. Heintz and sealants with Dr. Kim.  We are nervous because he will be under longer than he has been before.  Last time we had a hard time waking him up which is incredibly scary.  Kids with PWS don’t metabolize medications the same way we do in their system, so they get very small amounts of anesthesia and no narcotics.

Please let us know if you have any questions about Kemett’s doctors!  Thanks for your support!


The Demands


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.



The Demands