February 8, 2011 – Well, first off THANK YOU for all the LIKES on Facebook, because it means there are many people out there who love and care for my son Tristan and his well-being, and it means the world to me. I know many of you have been with me and Michael from the start, so you can totally understand my ups and downs throughout this experience.
Tristan has a new developmental pediatrician named Dr. Anna. Her bedside manner is laid back, and she seems open-minded and willing to listen. She recently listened to a lecture from Dr. Germain-Lee about Albright Hereditary Osteodystrophy (AHO) and the work done with AHO patients in the research. I feel this is a blessing, because I think Dr. Anna understands Tristan and what he deals with in life. In any case, it is nice to not need to start from the beginning and explain as much detail about him and his condition. Of course, we talked about him as a baby, when he got glasses, and when we started to notice the bone growth (osteoma cutis) in his skin. After those updates and talking to her about school, therapies, and so on, I am optimistic we have another specialist on Tristan’s ever-growing rap sheet of good physicians. I think she will not only be a team player, but I feel she will also go the extra mile for my son. Another blessing on the doctor front-lines is we recently changed our insurance program, and now we can go off the army post to see whoever we wish. As much as I dislike to live in Maryland, I KNOW God brought us here closer to those who are the BEST, and to have the primary AHO researcher in our back yard.
So, why do I feel sad and frustrated if today was successful? Tristan’s thyroid disorder is associated with great scrutiny of his growth and weight charts. Any increases or decreases are notated, and attempts are made as to what it all means. Today it appears Tristan grew a little more than an inch in height over the past year. If this is accurate it is good in that during the previous year he did not grow in height at all. Overall, in the past 24 months Tristan grew one hard-fought inch. The part that depresses me is he did not gain weight, and not only that, he actually lost several pounds. He is now less than 30 pounds at four years of age! Lots of his therapists as well as the people at his school have slapped our hands lately because we feed Tristan by hand a lot. We expressed our concerns with Dr. Anna today about this. We told her if we did not feed him, then sometimes he would eat only a small amount or would not eat at all. We tried not to feed him ourselves, but then he starts to loose weight rapidly. We give him various pediatric shakes and drinks, but he hates them. We put heavy cream in everything he eats, and that does help to a degree, but I know something is NOT right. I felt this for a very long time, and luckily today I feel I have a doctor who will help Tristan in this area. Dr. Anna said she will connect us with a nutritionist who is also a physician who can run tests on him and see exactly where Tristan is lacks in terms of diet. Then I can only cross my fingers that we can then fill this void, whether it is via vitamin B-12 shots (which have helped kids with Autism, but they are SUPER expensive), or by figuring out if he has a leaky gut or whatever. Tristan wears the same clothes he wore last winter and also the summer before that, and they still fit him perfectly. To some mothers this could seem great, because you save on the purchase of new clothes, but to me it is a reminder something is wrong.
I am also frustrated because I made so many changes nutritionally in this family and for Tristan, but he still struggles. I am saddened because I do not feel my baby should need to fight this hard for a normal life. Tristan has some of the brightest physicians in his corner of the ring, but he still struggles.
Today was optimistic in that we found out Tristan was accepted into a program called DEMO where he will get up to ten hours per week of one-on-one tutoring with a person who is trained to work specifically with Tristan and work on his goals. This time does not include the hours spent with his ABA therapist Anne. The other blessing is our insurance pays for it all! When one door seems more difficult to open, God opens wide another door. I cannot thank you all enough for your prayers and for your loving comments about me pulling Tristan out of preschool. He receives so much more therapy than what they provided at the public school. Tristan has a rough time right now with noise sensitivity and change. He becomes agitated and upset easily at various stimuli. I know once we get into a routine, he will swing right back and be his happy little self again.