I know it has been a while since our last update.
We have had some fun times, as you will see in pictures. We went to Denver in January to visit our best friends, the Chugers! Kemett got to play in snow for the first time. Kemett got his first therapy bike, got to see Great Grandma Demand, and went to his first concert- Wanda Jackson at the Lonestar Roundup!
You may also see in pics that Kemett got a play kitchen. There is no food, just plates, pots, pans, spoons, etc. Maybe next month I can talk more about the kitchen.
February was a busy Doctor month for us so here is an update:
- ENT- We discovered Kemett had fluid in his ears. His ENT put him on nasonex and within 6 weeks it was cleared up. We learned his tonsils and adenoids are still small. He also had a hearing test at our follow up and he had perfect hearing!
- Pulminology- Dr. Kang put Kemett on singulair to help with the fluid in his ears and to make sure he was in the best condition for his sleep study he had in March. We got great news- Kemett’s Sleep Apnea is now MILD! This was such amazing news- we have worked hard this past year to figure out all of Kemett’s health issues and get them under control. Feels good to see they worked. And is nice to sleep through the night without beeping noises.
- Dentist- Kemett’s teeth look great!
- GI- Dr. Scheimann thinks that Kemett looks great. They were happy with his diet and decided it was time to get him off of his elecare formula. This was such great news! His scope in December showed his Eosiniphilic Esophagitis had improved. We will do another scope in the next month or two to see how he is doing.
- Allergist- We did skin testing and blood work. We were hoping to add soy and/or almonds but unfortunately, Kemett is allergic to both still. We were able to introduce beef and corn.
- Nutritionist- Thanks to Melanie Silverman we were able to wean off of elecare Jr. We have milk options that are enriched- rice, coconut, hemp and flax. He is also on a calcium supplement, multi vitamin, and probiotic.
- Therapies- Kemett is not speaking much, but signs what he needs. He also took 5 steps a few weeks ago! He is doing so well in therapy!
Endo- Dr. Miller- This is the big one and gets it’s own special paragraph. We did his routine blood work in February and his IGF-1 Levels were high, 258, which means he has moved into the next phase of PWS, 2A. Typically in this phase kids start gaining weight quickly because their metabolism slows down. It can be controlled by diet. Our nutritionist and Dr. Miller agreed that his diet is perfect right now, low carb, high fat and protein. They also felt that weaning Kemett off of elecare might help. We will retest his blood next month and hope his levels will lower or even out. For those interested in nutritional phases and IGF-1, please read Dr.Miller’s article here.
Next Month is Prader-Willi Awareness Month! I hope to answer people’s questions about PWS so please feel free to ask us anything.
Thanks again for all of your support!