Somber, Matthew! We don't get too many smiles from our little "budder nut" (his official nickname-it started from little buddy and evolved!
Matthew had a doctor appointment today. He's three months and a week or so. He weighed 12lbs 3 oz. His head circumference was 44 cm- which is up. His phenobarbital level is 19. The first time it's been in therapeutic range for at least 6 weeks; but still on the low end. His pediatrician-along with his mommy- are a bit worried with all the "ticks" and 'jerkiness" Matthew is doing. Dr Springman called his neurologist and got his EEG moved up to Tuesday. I'm waiting patiently-not really-for this appointment. I'm actually fairly apprehensive about it. I'm been silently concerned for a while now with his neurologic status. Something just doesn't feel right.
I'm also entering into a new area of,well, I guess you'd call it grief. I thought I was done crying about this hydrocephalus crap. These feelings haven't surfaced since before Matthew was born. But now I'm seeing him starting to miss milestones; not holding his head up, very RARELY smiling (and mostly when he smiles it's not at people, but when his favorite music is playing. ) The receptionist today when we checked in thought he was sick. He was nuzzled into my shoulder and she said, "oh poor baby, don't you feel good?". I almost burst into tears right there. I am actually very shocked I'm feeling this way. I mean, really; my baby is ALIVE. Not everyone is lucky and blessed enough to bring home babies. Lately, I've become very aware of those either through SIDS or stillbirth who aren't able hold and kiss there babies . I have a beautiful baby to smooch all day. But every once in a while, these feeling sneek in. I'm just, well, sad I guess. Sad he's not smiling very much; sad he's not holding his head up, sad he can't try out his new bumbo I bought for him, sad he can't ride in his sling facing out so he can get a new perspective of the world; sad he doesn't hold his head up well enough to tolerate sitting in his bouncy seat so he can watch his brothers and sister work on school work; sad that when i talk to him he more often cries than coos, sad that I'm sometimes relieved when he falls asleep because he's not fussing anymore. I'm sick of forcing medicine down my child 2 times a day. Even though his appointments have thinned significantly, I'm sick of doctors poking and prodding him, (although we LOVE, LOVE our occupational therapist that comes to our home each week.) and sick of trying to find places for my kids to be while we are at the doctors. More often they end up coming with us and it's really too much to ask 3 kids to sit still for 1-2 hours in an 8x9 room filled with things they shouldn't touch-we're all frustrated by the time the day's over.
All right, pity party is over. I almost deleted what I just wrote, but I'm gonna leave it. I want to be honest. I want everyone who reads this to know I LOVE this little guy with all my heart, and I thank God everyday for my beautiful little miracle; but that it's not always easy. It feels good to write it too. To just get it out. I guess it's free therapy :)
I'll post an update on his appointment Tuesday. I don't know how much we'll know until he sees the neurologist the next week, but I'll write what I know.