I'm tired because Manny has not been sleeping. About 4 or 5 nights out of the week he will sleep for only about 2 or 3 hours (goes to bed fine and easily and on schedule, then wakes about 1 AM) and stays awake until almost time for everyone to get up, around 5 AM or so. He will do this for many nights in a row, then sleep "most" of the night for a day or two. It is exhausting and I don't even want to go into the thoughts that I have some of these nights. I have read a little about sleep disorders in children with NF1, and it seems to be a common problem. I really don't even want to talk about it any more than that.
On a lighter note, Manny has had an appearance change. I cut his hair. And no, its not because of the rude an uncomfortable comments that I have been getting, mostly questions like "Do you secretly want a girl?" (yes, I didn't cut my baby's hair because I am disatisfied with his gender. Shhh.. don't tell, I dress him up in girl's clothes when we're home alone.) or "Is it for religious reasons?" (um......), or "Well, there's gotta be a REASON. What is it?" (I dunno, its a novelty? Its gorgeous? I'm kind of a hippie chick? why not?...) but I digress. I shouldn't be surprised at the fact that people think they should speak every time a thought enters their head. So anyhow.. due to the fact that it was just becoming a huge pain in the ass, I cut my lil dude's hair. He's even more beautiful than before.
Jake went through a bad spell with school, to the point that we had to go pick him up because he was freaking out the teachers with his gagging and hyperventilating. I discovered that he really needs a longer transition time in the morning, so we get him up and we go play on the front porch for a while to get his blood pumping. This quickly solved the problem. Whew..... his father and I both felt like we'd been punched in the stomach when we got the call, fearing a repeat of his first school experience.
School is still doing wonders for Jake. He constantly is more "conversational" if you can call it that. He SINGS all the time, songs from school and television. He is a genius at remembering the words to songs, much to my delight. This morning I was working and heard an odd noise from the kitchen. I yelled for Jake and heard him say "I stuck. Ayuda me (help me, in spanish)." and I went to see what was going on. I shot this video of him singing the "Wonder Pets" theme modified to fit his situation.
I'm still going crazy with Bratsacks. Even with two people helping me part-time I still sew almost full-time. I got word from Parents.com that I will definitely be featured at the end of the month. Thats HUGE! Luckily I have wonderful support. Between Steve and his parents I'm really able to take advantage of this opportunity. I guess the most heart-warming thing about Granny and Pops has to be the budding relationship between Manny and Pops. Pops even beats Granny to the car sometimes to come pick him up. Pops is the one who Manny runs to when he's upset, and I swear the bugger totally ignores me if his grandad is in the room. Its pretty amazing to watch. We have even more doctor's appointments with Manny in the next few weeks (hematologist/oncolagist) and Granny will be able to get Jake off the bus those days so Steve doesn't have to take off work. She'll also be taking Manny part of the time during a music festival next weekend (he is at a phase where he's next to impossible in public... I remember this stage with Jake...whew), and will get Jake after-school while Steve works and I fly to Austin for a friend's wedding. I try to make it very very clear that we dont' want to take advantage of their help, but they actually seem to love it, and never miss an opportunity to spend time with them. Jake is on fall break until Wednesday, and I thought about planning an outing for everyone on Tuesday, but that was a laugh. Granny is too excited to have both of them on her "regular day."... I guess I'll just have to go on our field trip on Monday. What a blessing.
I guess I saved the best for last. Today I went out to the garage and Manny followed. He went to the van, banged on it and said "cahhhhh!" Huh? really? I actually didn't get my hopes up, simply because, though he tends to say words sometimes, its not consistent. He spent the rest of the day bringing me toy cars and saying "CAHH!" SO proud of himself. I hope this is the beginning of real progress.
Now I must sleep. I'm sure I left a lot out, but thats the best I can do tonight.
