Sunday, April 25, 2010
Wednesday, April 14, 2010
I finally get home and there's a message on my home phone from the sheriff's officer that works for the school board...great. Considering K and Smiley are the only ones in school, K must have done something. She didn't feel the need to call either of our cell phones (3 numbers between the two of us), so since it was about time to get the boys anyway(and had they actually arrested him, they would have called our cell phones) I decide to wait and ask K if there is something I should know, then I drop him off at counseling.
In the meantime, both my in-laws call my and L's cell phone to say someone in the sheriff's department is looking for me(like I needed the extra stress). I told L to call and deal with it and of course he gets her voice mail. What the hell gave her the right to call my in-laws looking for me when she hadn't even ATTEMPTED to try our cell phones? They are already nosy as it is and don't think much of K. The reason I listed 3 cell phone numbers because I have 3 adopted kids, all with some kind of needs and am pregnant, so I'm at the doctor or therapist nearly every day!
I'm also a bit ticked that the principal did not call first if there was a problem. I remember when I taught there, I was expected to communicate with the parents before going above there heads.
Thursday, April 08, 2010
All abnormalities are on chromosome 15:
a 2 copy gain(4 total copies instead of normal 2) of 424 oligonucleotide probes from 15q11.2-q13.3 estimated 9.5Mb in size followed by a single gain(3 total copies) of the next 53 oligonucleotide probes from 15Qq13.2q13.3, estimated 1.5 Mb in size
syndromes in this region of the gene: Angelman Class I, Angelman class II, Oculocutaneous albinism 2 (OCA2), Prader Willi (PWS) class I and class II
OMIM genes in affected region: POTEB, TUBGCP5, CYFIP1, NIPA2, NIPA1, MKRN3, MAGEL2, NDN, PWRN2, PWRN1, C15orf2, SNRPN, PAR5,IPW, PAR1 UBE3EA, ATP10A,GABRA5,BARBG3,OCA2, HERC2,APBA2, NDNL2, TJP1
Ok, my head hurts now.
Feeding issues have gotten worse. Although I've been proactive in working with the doctors and seeking help I've been seeing "failure to thrive" documented on some medical records which scares the hell out of me that someone may try to report me for neglect. I know I had the medical documentation of his conditions and all the doctors/therapists we've been seeing, it's still scary.
I don't know why this fear has come on so strong lately, especially since deciding to not seek work for a while to try to get him as much extra care as possible. Even with all the therapists he has seen, none of them could get him to chew either. I feel like a failure having to see the surgeon yesterday to schedule to re-insert the g-tube. Your child fighting meals is one of the most helpless feelings in the world. At least when J is playing around and eating little, I can put an instant breakfast in milk and he will drink it all. Smiley will still only take about 2 oz. of drink per feeding/sitting(although he is progressing somewhat).
My little man is getting physically stronger than me. I need assistance with diapering and bathing because he moves around so much and is extremely flexible in getting out of your grasp. That being said, these times are amusing because he's giggling non-stop while doing all the wiggling. He no longer wants to sit in the tub, but stand and attempt to dive in the water, along with splashing of course. He can also turn the water on if he cans a hand free. Bathtime is the most exhausting chore, but at least he enjoys himself, but mommy is exhausted after.
Sleep is an area he does well in! I put him down, he bounces and babbles a while and then will go to sleep when tired and sleep for the night. This is only if he's in a contained baby bed alone. Put him in real bed beside you, he would be up all night.
Well, if anyone is still reading, thnaks for listening. I know it's probably the pregnancy hormones making me worry so much but feels better and writing it down and letting it out a little.