Since the last update, Daniel has celebrated his 2nd birthday with the family.
We were suppose to have a dinasaur theme but I couldn't pull off the cake, so we went with his all time favorite--Elmo. He seemed happy with it. It wasn't exactly how I had planned for it to look. He original Elmo cake that I had planned out, took the head of Elmo as you see here and it looked like it was popping out of gift boxes, but if I had done that one we'd be eating cake for the next two years......it would have fed 130 people. We had a mere 20. So we scaled it down a tad! :) Impressive cake? I think not...
Anyways....Daniel had fun at his party. He got to hang out with his favorite Uncle "Chic" and just chill. He got some really cool gifts as well, to name just a few, Elmo PJ's, and Elmo doll, and Elmo giggle chair (which is hilarious to see him sitting in), lotsa clothes that he desperately needed, and some additional toys. He seemed to have a lot of fun, well that was he had fun BEFORE he crashed and took a nap for 2 1/2 hours!!
Daniel also had his two year check up, it went fairly well for the height and weight department but went downhill once they started to ask which milestones he had reached, don't they know that you ALREADY know he's behind, why do you have to make me verbally say "NO" 800 times to the "Is he....." questions. Drives me nuts! You see him almost every month, you know what the hell he's doing and not doing. Then I don't need the follow up statement of, "well of course you know he is behind significantly." No??? you don't say? I didn't realize that! Well I'll be damned! Anyhow.......while we were there we had to get some blood drawn, a TB test, and a Urine sample. Now here I am with little Daniel on my lap waiting for the scream when they do the TB test...nope nothing...OK picking the finger and getting blood for the CBC.....Nope nothing, no tears, Nada. Lay him on his back to clean up his diaper area and attach the little plastic baggie over his peeper to get a urine sample and you would have thought the world was going to come to an end. NO WAY was he going to let someone near his privates with iodine and tape a baggie over his jewels! He let everyone in that office know that he was having none of this nonsense! As soon as the diaper was back on and he wasn't bearing his goods to everyone, he was all smiles.......ah life is good! He is a funny little guy!
So we had to get the TB and the other tests to get ready for the ACTH that is possible going to start in the near future. I could really use some advise, the good the bad and the ugly of ACTH. If you're reading this and you've had experience with it, please let me know.
I've been kind of out of the loop and not checking on the other Yahoo support groups that I belong to for about a month. Just so bummed about everything that is going on and so overwhelmed with everything. The follow up with doctors, the follow up with insurances, the follow up with all the different therapies, researching ACTH, having horrible dreams, the inner arguments within myself about what is best, what I should expect from people involved with Daniel. BLAH BLAH BLAH........just sometimes I want to sit here and just scream and then have a really good cry. But I not to certain that once I start, I'll be able to stop. I can say the words, Daniel has Cerebral Palsy, Infantile Spasms and has a brain malformation called PMG. I understand all of this. But when I stop, and sit for a while, and think about it, actually sit there and say "Oh my God, he may never walk....He might not be able to use his hands to use an augmentative device......I then get scared, I get really frightened, for Daniel and for myself. So many "what if's".......so many things to do and I don't even know where to begin. WHY THE HELL ISN'T SOMEONE HOLDING MY HAND THROUGH THIS CRAP?? What way do I go now? Where do we turn?