Thank you ladies for your responses. I totally understand about not even being on the growth charts. I still remember the first appointment we went to that Aiden was on the chart, how excited we all became, we went out for dinner to celebrate! lol
Honestly if all the awareness of his condition means is that he will be far shorter than we expected than no problem with us. Although I do wonder what that will mean as far as adjustments will will need to make for/with him when he gets older, like with driving and such. What really concerns me is what this means for his legs and some of the digestive issues he has had since birth. I just want answers and to be talked with plainly and straight forward with his doctors instead of feeling like something is being hidden from us. I suppose I will just have to wait until August to find out.
This has all been such a roller coaster for us. When he was 6-7 months old and had not grown they slapped the failure the thrive label on him despite him being a good eater. And it took days in the children's hospital under a critical eye before they finally figured out that yes I was feeding him. They would come in and weigh him before he nursed and then come back and weigh him again afterwards. I cried my eyes out when a doctor finally came into our room and said that although they still didn't know what was going on they knew it wasn't us.
So now I am wondering if he has pituitary dwarfism is it even the right thing to continue him with his shots??? There is the very real risk, although rare, that the shots can cause swelling on the brain. Every time they up his dose we have that worry all over again. They are particularly watchful with Aiden when upping his dose because he suffers from chronic headaches. Unless it is absolutely necessary that he receive these shots than am I not risking his life just so he can be a little taller???
Sorry I am emotional today. I am soooo frustrated that I can not talk with his doctors until August and you add pregnant with twins hormones into the mix and you have a very easily upset woman on your hands.
Thank you all for listening to me, I think I just really need the extra support right now. And for all you ladies going through this as well I am so glad to meet you all, it makes me feel less alone. I hope our appointment with Aiden's doctors, when it finally comes, can help all of you as well.