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.












Kemett is 11 Months!

Hello Everyone,

I can’t believe that Kemett is already 11 months!  I have been thinking about life a year ago.  We were anticipating Kemett’s arrival by getting his room ready, washing baby clothes and cloth diapers, and nesting.  We were resting and watching the Sopranos (Kemett’s favorite show :-)).  We were ready for whatever life was about to hand to us, and I’m so happy we were prepared with an open mind.   During those long days spent in NICU, all I did was think about that room we had made for him and those cloth diapers I wanted to put on him (I was so tired of leaks and blowouts in disposables in the nicu), at home.  I just wanted to be home, away from the strangers, the wires and cords, and separation from Kemett.  We wanted to be able to sit on the couch, watch football, and hold our baby while he slept. ( Although, Kemett had a great view of the stadium and tower from his bed, it still wasn’t the same.)  We wanted the comforts of home; to build our family and get to know Kemett in our own way.  We were lucky to only spend 3 weeks in NICU.  We were lucky we could take Kemett home.  I envy those with easy deliveries and who get to take their babies home, but I wouldn’t change our experience for anything in the world.

Here are some highlights from this month:

  • Kemett weighs 18 lbs 6.5 oz and is 29 inches long!
  • Kemett can sit up straight and get into a crawling position.
  • He got his 7th and 8th teeth!
  • He had his second sleep study (they do one 6 months after being on growth hormones).
  • We visited his Nanny at the LBJ Library to see their 60’s exhibit.  Kemett is ready to read the Feminist Mystique.
  • He got a pair of Sure Steps (ankle foot orthotics) and his first two pairs of shoes!
  • We participated in his first 4th of July Parade in Belterra.
  • We had Louisiana family in town visiting, my dad’s brother, Uncle Ricky!  This meant we ate very well for that week!
  • Kemett is eating more chunks.
  • Kemett sat in the tub independently
  • Kemett swung in a swing for the first time
  • AND he rode in a shopping cart for the first time!

Next month I will have more medical updates.  He is seeing a lot of doctors, including Dr. Miller again and Dr. Scheimann.   I also look forward to talking about all of Kemett’s accomplishments this year.

Remember, One SMALL Step Dripping Springs is on September 13!  Visit our personal fundraising page for more info: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

Love,
The Demands

 

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

Kemett is 11 Months!

First time swinging!

First time swinging!

Family pic at the park!

Family pic at the park!

Kemett Sitting!

Kemett Sitting!

Fourth of July!

Fourth of July!

First time sitting in shopping cart!

First time sitting in shopping cart!

Kemett and Nanny with LBJ!

Kemett and Nanny with LBJ!

Kemett and Uncle Ricky!

Kemett and Uncle Ricky!

Sitting independently in bathtub!

Sitting independently in bathtub!

Sure Steps!

Sure Steps!

Kemett loves his shoes!

Kemett loves his shoes!