Tuesday, January 25, 2011
Matt said something very funny yesterday. I drove the 3 kids to school as the buses were late from the freezing temps. After dropping Ashley off, Matt wanted to hear the song Two Hearts, by Phil Collins, one of his faves. I put it on, played it twice on the way to school in the van. Julias gone off with her aid, and I was talking with Matts SPED teacher, and than she tells Matt, "you have an aid today, Mr. Collins" Matt than starts jumping up and down, so excited, "Mom, Phil Collins is going to be my aide today, can sing Two Hearts" We than had to burst his bubble, sorry Matt, his name is Steve. Matt than said, ok, I guess, he sounded so bummed. Leave it to Matt. Katey Perry is coming to Boston in June, around Ashleys birthday, got me thinking, she would love that! Better than planning a party, and easier.
I am so sick of snow!! this winter we have been pounded with snow. On to Julias next medical visits in her life. Last week she went to the toilet training clinic and dental clinic at Childrens hosp. We are so done with changing gross, wet, poopy pull ups from Julia. We know she can't help it, not doing this out of spite, so we just keep changing her as need be. We have been having her use the toilet, has urinated in it alot, but no communication from her. We think she would just be content not to be bothered even in a soaked, poopy pull up against her skin for who knows how long. We only know since she'll stink. so after all the chatting bout this topic, the developmental Dr and nurse practioner who saw Julia, my husband and I, and her gazillion Dr's feel that she is 18m developmentally. Put that together with the significant delays, DS, very low muscle tone, living 6.5 yrs in the orphanage, encephalopathy, etc. the Dr asked me what we thought a good goal was for Julia to be potty trained, I told her, we would love it by the time she is 16. the Dr thought this was a very realistic goal. Another 8 yrs of toilet trining will just suck, but hoping before then. the Dr also ordered an abdominal x ray to check if stool was moving, nope. Julia was impacted with stool, looked like little sausage links sporadic in her bowels, even halfway up her back. I looked at her x ray with the Dr and nurse, by accident I said "holy shit, it's even up her back. I'm usually the "Professional parent" at the kids Dr's appt. The Dr just looked at me and said "yes". the Dr felt that since Julia had alot of stool impacted that we go the one square ex lax, miralax route to get this cleaned out, and than can give her benefiber once a day. the Dr asked when Julia would be seeing GI, as she felt that maybe Julias bowels don't contract that well, coupled with low muscle tone=impaction. Julia has a GI Dr, and all ready has an appt in a few weeks with him, another thing to bring up other than reflux. Back to the pottying, as Julia is developmentally 18m old, way too young to start training, so just keep doing what we're doing, hope for the best. i'm so glad that the Developmetal Dr was there, she is also the director of the Internation Adoption/foster care program and has known Julia since Aug 09. I asked her what she thought of Julia and PDD, and the Pscyh Dr agreed, even though developmental didn't see Julia for that, she agrees with the Psych Dr, asked how I felt about this new diagnosis. We just feel bad for Julia. Chatted for a few more minutes, than left for the dental clinic. Julias teeth are still not great, still have plaque, severe over crowding, etc. she had a little baby tooth pulled as hopes of the 2nd front tooth coming in that spot, no room with the baby tooth there, was slightly loose, the procedure only took about 30 mins, no OR so that was good. The dentist was the one that was involved in her oral surgery last summer, so he knew her well. He said he did feel the front tooth at the gum line, her front teeth are huge, like in the movie, Nanny McPhee. hoping she will have that tooth come in quickly. The first front tooth came in about a month. Julia started getting sick about a week ago, didn't wait as long as we did last time to have her checked, as last fall with pneumonia and sinusitis. I brought her to the Pedi after 3 days of the runny nose greenies, coughing, being tired, unusually clingy, temp. She has a right ear infection, and the Pedi thought she was on her way to another bout of sinusitis, so he figures clear them both up with amoxicillian. she's ok, and at school. Yesterday, the phone rings, town number while kids at school=panic attack. the school RN, "Julias hands are rather purple today, what should I do?" thought to myself, not to send her home. I just told her run them under warm water, keep her inside, not much else you can do, her circulation isn't the greatest under 60 degrees. Even our house is 70 degrees, hands and feet purple. If the school RN is calling commenting, guess I should call Rheumotology now for an appt. Expecting another 10-15" of snow weds night into thurs, kids home another day. this rate, they should have school until July. guess I should go get some errands done, before I know it, the school buses will be here.
Monday, January 10, 2011
I still had a sneaking suspiscion about Julia and autism. Her social skills and eye contact just suck, she prefers to be alone, in her room, door closed. She just goes along becasue she has to. Christmas eve was at my sis, she has 3 girls, so they're not strangers to Julia, BIL, my brother, my mom, and her husband were there. Julia wouldn't even barely look at them, never mind babbling to them. she either obcessed over the food, or would just walk from the kitchen, through the hall, to the living room, and back around again, about 50 times. Basically no interaction at all. the obessive behavior, repeatative behavior, having some agression at school, seen some regression. So I sent an E mail to the psych Dr, who was out of town, and page him after the date he returned. I told him what we have seen, he knows her quite well, has been seeing her since she came home, which was almost 18m ago, hard to believe. After speaking with him, he diagnosed her with PDD-NOS (pervasive developmental disorder-not otherwise specified) is a diagnosis of the autism spectrum. We are not at all surprised, she is so funky. Just another label, that will hopefully get her more services at school, and possibly we'll get some speech, more OT for her through Childrens or someone else locally. I spoke with her sped teacher, and we'll have a meeting soon, with the behaviorist. Hoping at some point this label will be removed.