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.












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Kemett goes to Florida!

I know this post is very late, but I still wanted to tell everyone about our amazing trip to Florida!

After we received Kemett’s diagnosis, initially, we did tons of research.  We found a common denominator- Dr. Jennifer Miller at the University of Florida in Gainesville, FL.  She is an endocrinologist and one of the top researchers in the country for PWS.  We knew if the diagnosis was confirmed that we wanted to see her.

We got in so quickly.  She sees new patients on Fridays.  We had to get a flight in less than a month.  We flew into Orlando on a Thursday night and drove to Gainesville for our appointment.  I was anxious to meet her and see what she thought of Kemett.

After we arrived and put in a patient room, Dr. Miller came in!  It was like meeting a celebrity!  She wanted us to meet another new patient who was 11 1/2 years old.  The other boy wanted to meet a baby.  He was such a polite and sweet boy.  He talked about things he liked to do like ride his bike.  He also had no issues with food – he knew what he could and could not eat and had no behavioral issues.

We then met with Dr. Miller.  She held Kemett while we talked about all the doctors we see and therapies he does.  She told us that he will be in typical classes, he will not food seek or feel hungry one day, he should not have behavioral issues if we treat him how we would treat any of our other kids, he will more than likely be independent and go to college, and he may even get married and have kids one day.  She said that the new research has done wonders for this generation.  We now know that feeding kids good fat, carb and protein diets is important.  In the past kids would count calories and would eat anything that added up to 800 calories.  Now we know that good fats are needed for brain development, so he should have a normal IQ.  She also encouraged me to keep pumping for as long as I can because it is doing amazing things for him.

She said that he may have a harder time learning colors, shapes, etc, but we will push him and he will keep up with other kids his age.  Now that he is on GH, he should start meeting typical milestones for kids.  We will work with him more than we would a typical kid, but he should meet milestones and not be behind.

Andrew and I were already hopeful that Kemett would do great things and that we would help him in anyway we can to get him there, but this was such great news.  We know that he will still have struggles in his life and he will have to work harder than his peers to achieve his goals, but we hope that we can provide Kemett with such good structure and an environment that he can thrive in.  It is going to be hard work and it is hard work right now, but its all worth it.  I mean who wouldn’t do this for this kids.

Since this meeting, I have met so many other parents with older kids with PWS and they are all doing great.

I think that Andrew and I have a healthy and positive outlook on our situation, which is not the case for all families.  I don’t want anyone to think that things are easy breezy because they aren’t but the things we deal with for Kemett are the norm for us now.  We just adjusted our thinking and how we pictured our lives for Kemett and it has brought us so much joy.

We did have an endo in League City we were seeing and who prescribed GH for Kemett, but we have now decided to exclusively see Dr. Miller.  This means I will get to know Gainesville a lot better!  Maybe we can take Kemett to a football game at The Swamp!

After our visit with Dr. Miller, we drove to St. Augustine, Florida for some relaxation!  Below are some pictures of our trip.

Love,

The Demands

 

 

Kemett's First Flight

Kemett’s First Flight

The Swamp

The Swamp

Andrew and Kemett

Andrew and Kemett

Castille de San Marcos

Castille de San Marcos

Castille de San Marcos

Castille de San Marcos

St. Augustine

St. Augustine

The Beach

The Beach

In St. Augustine Soaking up the Sun

In St. Augustine Soaking up the Sun

The water was cold!

The water was cold!

Kemett loved the Beach!

Kemett loved the Beach!

Sweet baby feet

Sweet baby feet