Endocrinology Appointment and Happy Holidays!

As mentioned, we took Landon to see an Endocrinologist yesterday because of his TSH and T4 levels. The appointment went well. We don't have any answers yet, but will after the results of another blood draw come back. The appointment started off well when a physician's assistant that I worked with while interning, as part of the behavior team, in the Weight Management Center at Children's Hospital walked into the exam room. My stress and anxiety wasn't so bad, but it was great talking with a familiar face. He collected some information and we chatted for a while before meeting with the doctor. John (the PA) and the endocrinologist talked to us about his levels and that they could not be sure, without furthering testing, if his levels are off because he has Hypothyroidism or if it's the Cystinosis and the fact that Landon's body produces very little protein. Either way- it has to be managed with medication. I did learn about why there is such a sense of urgency when these particular levels are off in children. We know that the brains of little ones (ages 0-3) develop at a very fast rate and these levels affect how children grow so it is really important to manage these levels so that the brain continues growing and developing. I sometimes joke that Landon's body is the size of a one year old (he wears 12 month clothing), but his head is the size of a 20 month old. This is a great thing, even though it does make me laugh. I was putting a t-shirt on Landon the other day and Jimmy commented that the shirt is too small. My response was, "nope, it's just a little small on his head. It fits the rest of him!" We do count our blessings in that cognitively, Landon is right on track with his peers, even if he is smaller than most of them.
One other thing I wanted to note is that two articles about Landon and Cystinosis were published in our local paper, the Pittsburgh Post Gazette, on Monday December 19th. Here are the links:

http://www.post-gazette.com/pg/11353/1197569-114.stm

http://www.post-gazette.com/pg/11353/1197575-114-0.stm

There are a few things in the article that are not totally accurate. One of the article mentions that we give Landon his Cystagon mixed with applesauce. We actually mix it with 4mL of water and it goes in a syringe through his Mic Key button. Although I think once the new 12 hour medicine is approved and Landon begins taking that (supposedly in 2010!) then we will mix that with applesauce. I speak regularly with the dad of a young boy who is on this new drug through the research study.

Also, Jimmy and I made this mistake at the beginning as well, but Cystinosis is not a disease of the kidneys hence not a "kidney disease." Just to recap, an amino acid called cystine gets into the cell but has no way to be transported out. This causes the cells to die prematurely. It affects all of the organs but primarily the kidneys and the eyes. The medicine Cystagon, that Landon takes, removes the cystine from the cells. So again, it's not that something is wrong with the kidneys but the kidneys are most affected which is why at some point Landon will need a kidney transplant. So anyway, I just wanted to clear a few things up!

Just a reminder, I have the beautiful Cystinosis bracelets that were created by Cathy in hand. If you are interested in purchasing a bracelet for $35, please let me know.l $5 will go to the Cystinosis Research Foundation.

In case I do not post again before Christmas, I want to say Happy Holidays and Merry Christmas to those who also celebrate! The fact that you take the time to log onto this site and read this blog is incredible to me. I thank you for thinking of Landon and our family and for all of your thoughts and prayers. Our Christmas cards this year read, "Believe in Love, Faith and Miracles." We live by those words. Included is a picture that is on our holiday card. He looks like a little boy now, right?!

Happy Holidays!

Love always from our family to yours,

Jimmy, Lauren, Landon & Rocky Hartz
(I apologize but I think the picture is going to be shown sideways- boo!)