Test results

[Mom_2_Boyz]

Drew has 22q11 Deletion.  So, sign me up!  How can I help the effort for awareness?   Oh, and does anyone have a shoulder for me to cry on for a minute while I compose myself?

Thanks

[christy1977]

Everything will be ok!  if you want to talk just drop me a line. and one thing is chech out www.vcfsef.org  and you will get all the info you need and you might neet to take your son to and ENT doctor.  At least you know how to help drew. and with the new school year starting ask your school for more help for Drew.
Let your school know that Drew as the syndrome.
You have us for any crying or venting!!

In love and light
christy (22q11.2 deletion) and TJ(22q11.2 deletion)

[Mom_2_Boyz]

Thanks for the link.  I have been searching the internet, but I don't think I had come across that one yet.  I will definitely check it out. 

Drew has an ENT as part of his cleft team.  I love his ENT.  He is actually the head of the ENT department at the Children's Hospital in our state.  He has been great.  We will, of course. let him and the rest of the team know about the diagnosis.  Drew is already in the Special Education program at school because of his speech and fine motor delays.  The genetics department hooked us up with Children With Special Health Care Needs through the State Health Department last year even before we had the diagnosis, so they did a bunch of IQ, behavior and other psychiatric testing and the school participated in that too.   Drew is in a small group class setting at school for this coming fall.  He was last year and it was great.  I will let his teacher know of his diagnosis so we can be sure to watch for and address the delays if/as they come and change his qualifier (it is communication disoder right now).  Drew also saw a Developmental Pediatrician and an orthopedist last year and had a renal ultrasound (all this before we knew what the diagnosis was!)  So, we are a bit ahead of the game because we were fortunate to run across some really great doctors!!!

I feel like I have SO MANY QUESTIONS!  BUt, we haven't even had our appointment with the genetic counselor yet, so I need to just calm down!

Thanks for your reply!!!!

[jordansmom4life]

I am all about looking into treatments and preventions of digeorge syndrome. We need to raise awarness. Please let me know if there is anything I can do to help the efforts.