Tramatic Brain Injury

Yesterday was pure hell on me, but since im typing this so it means i made it hu? we had 3 appointments, plus the pharmacy and getting more o2 from the home health company yesterday, the little trip lasted from 930am to 330pm...when we got home i crashed!
i wasnt able to crash for to long though as Harold had a unit function to attend, so we gathered up the kids and went to a bbq. it was better than i thought, some wonderful ribs and burgers and Harold even had some deer Chilli...not for me though thanks:)
this morning we had 4 more appointments for the other boys:( for their behavior and that was over by 1030 luckily i came home to clean.no real changes for them, chance is being nearly 100% better, not sure if its mikey is gone or better sleep with the sleep medication, but its working. mikey is still showing out some, but no medication changes in him just some ajustments in time outs and such.
ended up needing to go to another pharmacy today and then the new ocupational therapist called and wanted to come by today, thursday and friday...eesh its been a busy week. Harold is on 24 hour duty tonight so he will be home tomorrow and sleep most of the day im sure. :(. im so drained and so tired! but when night comes i cant sleep....go figure?
Zach is still 21.6lbs still 27 inches(he hasnt grown in inches since we left in june) and 17 inches in his head size(small) the GI doc was happy with his weight and ordered a swallow study next week, this will help them to see if he is swallowing correctly or if he is aspirating into his lungs, this will let us know if we can possibly even attempt to feed solids or liquids to zach. next month when zach turns 1 year old they will move him from his current formula to pediasure. and other than the swallow study we dont have to return to GI until Dec. Zach also had a repeat echo done yesterday, results i wont know until friday when we return to the cardiologist.
Therapy went very well, it was more of a bonding time this time, she did however make him use neck muscles and back muscles and tummy time, we talked about his diagnosis' and a plan of action. she was told by the other therapist who evaluated zach last week that zach doesnt cry...and he really doesnt unless he is majorly pissed off or hurt. there seems to be some concern in this aspect, since he isnt babbling, or talking at all, she mentioned speech therapy may need to be brought in.we talked about zach being weaker on his left side of the body and preffering his right side. Zach also got some unexpected but much appreciated guests, Bro John and his wife Jannett came by to see us. we have been so bad lately for not getting to church, i know they came to remind us:) and to see zach of course. he loved the attention.
Things i suppose i never thought to ask the doctor until now while doing google searches....zach has billateral brain atrophy (his brain has shruken in the front) he had subdurmal hematoma, this is a result of a Tramatic Brain Injury TBI, he had a midline shift that has begun to correct itself after the last surgery on his head, all of this combined or even one single item could prove to be bad news later on, no one has commented really on what we can expect.
while at the appointment yesterday carrying around the diaper bag, oxygen tank, pulse ox machine and zach the nutrition lady (a sweetheart) mentioned the possibility of getting zach a specialized chair that could help hold his items,...this is definatly something to think about i suppose, we had hoped he wouldnt need that, but i think therapy is going to be a long road, not one zach cant do, just a long road. i still truely believe he has cerebral palsy, i think waiting till 6 more months pass could harm him:( ill have to try to get a second opinion to diagnose now. im trying to introduce to Harold the idea he could come home when zach is 2 and he still cant sit up on his own, this is hard to do though and hard to think about. Tramatic brain injury...all i can say is Why? i havent a clue. ugh, time to get ready for the night nurse....
heres to tomorrow....unless i forgot to write something down my calendar is EMPTY tomorrow:)