emotionally spent

goodness, today was a crazy day, thankfully we had our wonderful day nurse to help us out, she takes on so much for zach, i guess we have been getting short changed with our other nurses, but she does soooo much and helps us so much. were so happy she has been with us for about a month now.
Physical therapy FINALLY came by today, YAY! we started the eval process today, im sooo relieved to have that moving forward. she said we will most definatly need to get some adaptive equipment, a stander im sure and some other things to allow him to have the chance to do things a 12 month old would be doing. she wants him on the floor more and doing a lot of tummy time, he still doesnt tolerate it for long, but we will give it our best shot. she also said speech therapy has been approved so now we wait for a speech therapist to come on board!
Zach had his 1 year check up today, this was really one of the only times he has had a basic head to toe check up, and with HIS pediatrician, the only time we have seen him before today was in the ER when Zach went into respitory faliure back in april, he is one of the top docs here and so its hard to get an appointment with him, though he has helped me with referrals and medications over the phone alot.
Zach weighed in at 25lbs 7 ounces.....eek he is officially too big for his swing......as he swings in it now. :)zachs ears, nose and throat were checked, his lungs were listend to, and then his testicles were checked, apparently they havent dropped...why has this not been caught before now?i guess cause the attention was always on zachs breathing or the bleeding on the brain. so now we have a few options, option 1 is to have the surgery to bring them down, and normally this isnt a big surgery, but with zachs history there is concern with anestisia and a breathing tube. if we choose to do this he is at the prime time now. the doctor did say we may choose not to and this would cause him to not be able to have children of his own, but he asked if we even thought that was a possibility for his future.if we choose not to he is at greater risk for testicular cancer in his 30's. we have an ultrasound to schedule to find out exactly where the testicles are and go from there.
the next thing the doctor noticed right away, is Zach's head, it has been quite small for a long time and i have asked about it and been told to wait and see and blah blah blah. well today the answer is, his head is to small...because his brain is to small, the damaged tissue that died will not grow back. his brain is bilaterally attrophied in the front lobes, we went thru and looked at a couple ct's of his head, the doctor said it wasnt as bad as he thought and that he has seen worse, he told me he isnt a neuro but he has seen alot of films and cases and said it appeared that his balance part of the brain was pretty full, and he said that Zach may actually walk in time. (zach will be in running all over the place we know this for sure:)) he also said that zach doesnt show the spasticity that Cerebral Palsy patients usually have, and if he were to make a guess at it he would say Global Developmental Delay since his brain damage is probably kinda all over. he told me he was shocked i hadnt been told any of this or what to expect for zach and he hated to be the one to tell me this as he didnt want to upset me. but its things we have to know.
it was also time to renew our handicap parking permit, if he deemed it worthy, he immediatly marked it as perminant not temporary as it was done last time, so we shouldnt have to renew it anymore, and though its nice to have one less thing to do it was hard to read the word and not see "temporary" we talked a lil more about zach and the fact he isnt talking to us, or responding back to what we say, even with him rolling now the doctor said he is still at about a 2 month level. so after our LONG appointment the doctor sent us down to get shots, he only got zach the hep. a for now and help off on about 4 of his 12 month shots, he said he didnt want to stress him out and he could get them at 15 months. zach had fallen asleep in his stroller by the time we were ready to get the shot and he slept right thru it....bless his heart he is a tough cookie! the doctor was an awesome and caring guy and we are very blessed to have him working with zach, he was worth the wait, zach really recieved the best care today. our total time at the clinic was about 2 hours!
so were home now and exhusted. emotionally drained. and hungry