I’ve been meaning to update and well the floor needed mopped, the carpet vacuumed, the dishes washed, tivo to catch up on, watching 16 (!) two year old at church w/ one other adult, and it’s not like I’m “working” from home, I am truly and really working from home. Nap times give me just enough time to do each task I need to get done and doesn’t leave me much time to blog. Oliver is NOT supposed to be crawling and getting into the dog dish and trying to figure out a doggy door. I shouldn’t be baby proofing the outlets with a 5 month old. He is busy and wild and usually up to no good. He makes Andi look easy. But he plays hard and sleeps hard and for that I a grateful.
So Lily, Lily, Lily. Lily has been doing well in her therapies, LOVES when PT is in the pool. She has been riding the pony well. She loves music. School started yesterday but she did not go because after all her therapies she had wheel chair clinic. It was in Phoenix and the whole family went. The van’s a/c is not awesome so it was a long hot ride, it has been extremely hot here, like 115 hot and that whole “dry heat” thing is a crock, it is ridiculous hot and annoying. It is hard to be in a good mood while out and about. The w/c clinic agreed it is time for a new chair and they got her measured for a new one. We are very excited for this! She needs a new chair!
So Sunday Lily had a weird spot on her arm. I ignored it because she always has red bumps, she has sensitive skin. Then I saw one on her chin, so then I start to look some more and lift up her shirt and she is covered in red marks. I call my sister she says give her benadryl and after awhile they go away. Phew that was weird. Anyway, everyone goes to bed. I get up with Oliver at 1am and while nursing him I hear Lily cry. I finish feeding, put him back to bed, go into Lily’s room and she is covered completely with those red spots, different places but same type of things. I wake up Andrew he say just give her benadryl. I do. She is crying again, I go into her room and she is having tons of myoclonic jerks. So many I have to give her 1/2 a klonopin to get them to stop. She is knocked out. I go back to bed and check on her at 7am. She is up and clear. Phew all gone. Lily has OT/Speech and Music and during music her knee starts to break out again. Then her other leg, and arm. I call the Dr. I don’t want to keep giving her Benadryl, they say come in after w/c clinic (we have been waiting month for w/c clinic apt, I didn’t want to miss it). While we are at w/c clinic (1pm) the child looks like a leper. Everyone there was very sympathetic and itching their own skin just looking at her. But I didn’t give her Benadryl and by the time we made it to the Dr. (3pm) they were just pink and almost gone. That pretty much proved the Benadryl didn’t do anything these things are just coming and going in cycles. Dr. said it could be a virus she is allergic to. I can try walnuts again later to see what happens (I had thought maybe that was what it was), he said we may never know what it is from and it could last anywhere from 4 days to a week. Sigh! This kid always has weird stuff!
I was proud though that she was scratching her tummy. That took a lot for her to recognize that her belly itched and to put her hand where the spot was and itch it. I know what us special needs parents are proud of… crazy.
Anyway I did send her to school today with a long note to the teacher and I haven’t had a phone call yet. I am sure she will have another break out since I noticed she had one last night. But she is in good spirits, no fever, no upset so I figure she can go to school, she gets pretty bored at home.
Well baby boy is crying for me to pick him up. He may act tough but he is still my mama’s boy 🙂
Here are a few pictures of Lily, I will post some on flickr as well, so she can get some sympathy. ;0
One thought on “Itchy Itchy”
I stumbled upon your blog today and wanted to stop by and say hello.My daughter has a rare chromosome disorder, so I am always curious to read other special needs parents stories. We are like a little family here.Blessings,Christina