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.