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.
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!
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!
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!