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

img_8618

Enjoying our trip!

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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 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.