Waiting......

Did I ever mention how much I hate waiting?
We got our scholarship application in yesterday, so now we wait to hear back on that. The good news is in the meantime we are working on getting a time slot for a consultation with Dr. H. The leading specialist in the field of RSS/SGA. I am so excited about this!!! I can not wait to meet with Dr. H and see what her opinion is on D.
Today, I called all of Daylon's doctor's to get copies of his medical records to take with us. I also called Shodair to see what all they tested for when they did the genetic testing last fall. All they checked on was 22q deletion and to make sure he had the right number of chromosomes etc. So, I asked them about running the tests for RSS just to make sure we aren't missing it. The genetic counselor is going to talk to the doctor and see what he thinks of testing the genetics that go along with RSS. They had decided in the beginning not to test him for it because he is symmetric. In other words, he does not have the obvious characteristics that some RSS children have. Either way the treatment would be the same. I just find it funny that several people we know have commented on how he reminds them of an RSS boy they took care of at one point and now we have the SGA diagnosis which is very similar to RSS, and then find out that it's never been ruled out. Guess we will see what happens.
Waiting for records. Waiting for HRC to call to get us set up with his meds. Waiting to hear back about the testing! Patience is not my strong point!!
You can find more information on RSS here.

The MAGIC Foundation

Daylon never caught up like I was told he would by the pediatricians. Everyone thought he would just take off and be back on the charts in no time, but he didn't. So I started looking into IUGR and other growth problems and stumbled across the MAGIC Foundation (Major Aspects of Growth In Children). They are amazing. It is a foundation made up of parents and families that have gone through most of the specific growth disorders. They have helped educate me about what could have or could be causing Daylon not to grow as he should.
In July they have an educational convention where you can go and talk to the leading doctors in the field pertaining to your child. We would love to go and are in the process of applying for a scholarship but we would still have to come up with the money for airfare. Things have been really tight around here with Shawn being out of work for a month and a half so we can't do it alone. We are asking our friends and family, even strangers to rally around us and help us get to the MAGIC Convention so we can learn more about Daylon's growth disorder and how we can help him be all that he can be. Not to mention how we can help his sister's understand why their little brother has to have a shot every night and network with other families to see how they are dealing with all of the challenges we face everyday.
Daylon has been diagnosed as SGA. The MAGIC Foundation has helped us in so many ways. So many wonderful people to talk to that know what it is like to go through life wondering what you are doing wrong that your child is not growing. Wonderful people that help you understand the importance of advocating for your child to be sure they get the help and treatment that they need.