Thursday, April 29, 2010
Can't belive another month has nearly passed, marking Julias 9 monthes since we came home from Ukraine. Sicne Julia can be a little on the funky side, we affectionatly refer to her as "funkmaster B" In the past few monthes, her behavior seems to be getting a little funkier, as we thought maybe we are seeing some "red flags" for her being on the autism spectrum. I E mailed her Developmental/Genetics Dr about this, what we see, etc and she felt it was likely. The kids had a Psych dr appt 2 days ago, the Dr felt that Julia was having some "autistic tendancies" during the appt, but didn't want to diagnose her as of yet, give this more time and see if these "tendancies" will go away. I thought to myself, well, Geez, she's been here for 9 monthes, not like I was bringing this up a month after we returned. Both of the Dr's suggested ABA therapy, which I have heard can really help kids on the spectrum, which Julia could receive through the school system. The Dr's would give me a script for this, no problem, not sure if school would want the full blown diagnosis of autism. The Psych Dr wants another opinion from the International Adoption/Developmental Dr, as they work together, the other Developmetal Dr does not work at Childrens Hosp. Julia sees the International Adoption/Developmental Dr late June, will also see Neuro in July for the encepalopathy, always something. Other than that, she is having a good day, except starting to get anxious, hovering near the grocery bags like a hawk/vulture. Guess I should get the ball rolling and get her ready for lunch and school. Matt and Ashley are doing great. Life is good.
Thursday, April 8, 2010
Julia saw the Hepatologist 2 days ago, she felt that Julia was doing well, despite her cold. She has lost 2 lbs, she now weighs a "whopping" 34 lbs. Her appetite has been down, probably a combo of the meds, and her cold. I bought strawberry pediasure, which she likes. We had to get out of the hospital fast after Julia had labs done, as the kids had a 1/2 day at school. the 2 hr-25 mile drive in during rush hour to childresn-Boston was only 40 mins on the way home. Yesterday, I was outside relaxing, reading the 3rd installment of the Twilight Saga books, and the phone rings, school RN calling about Matt. Seems "charming Fellow" took a "header" from the grip of his teacher from the monkey bars. She was holding him up to reach the monkey bars, he fell out of her arms. The RN tells me that he's fine, no change in mental status or level of consiousness, no complaints of pain, no dizziness, no egg on his head, he didn't say that he saw "two of everything". The things one would look for after falling on his head. I was very concerned becasue Matt has a history of cervical spine probs, been on head, should, neck precautions for 4 yrs now. After I hung up from school, I called the Pedi, who agreed to order neck-back x rays, dismissed Ashley and Julia early from school, got Matt and went for him to have x rays. He really was himself, no complaints, no bruises, no egg on his head. I was so stressed. X rays were negative, and "normal" for Matt. He is NOT going on the playground structure or monkey bars anytime soon, or at all. He is not well coordinated enough. Kept him home today to keep an eye on him, as he hit his head, no signs of anything. He is just psyched to miss a day at school. Scared the hell out me. Another good thing, just heard from Julias Hep C RN, just after doing the Hep ctreatment for a month, the virus level is nearly non detectable in the last lab Julia had done 2 days ago. We're, or should I say Julia is on a great path as eliminating this sucky virus from her system. She is very clingy and a little annoyed this morning, as she is not used to "sharing" me with her brother during the week. she will get snippy, look at him, and try to hang on me. Typical siblings. Ashley started softball last night, the first practice, she loved it. Funny, she has the same number that I had when the last few yrs when I played town softball, not in the dark ages.
Friday, April 2, 2010
Matt had an appt with GI Dr yesterday, he feels that Matt is doing "phenominal", and he gave Matt a Scooby Doo comic book, Matt was so happy, as he loves Scooby and the GI Dr. It was cute, while checking Matts belly, GI would call him the "big boy" and tickle his stomach, and Matt would laugh hysterically so would the Dr. See the Dr next year for Matt. I asked him a few questions about Julia, as GI covers livers too. I asked him about her labs, so he got them on the computer, seemed a little perplexed as to why one LFT went up, and the other down, but we chalked it up to Julia just on her 3rd week of Hep treatment. He told me to relax and let "them" (Dr's) take care of the labs, I told him "can't do that, the labs get E mailed to me, and enquiring minds have to know" He said, well, if it was my child, I would have to know too, so that ended that idea. While there, Julia began the sneezing, greenies from her nose, beautiful. I thought she was at the beggining of a cold, I thought well, one afternoon at school and than a long weekend, as the kids have school off for Good Friday. We walk into the lobby of school, the eyes start draining greenies and yellow drainage, and have that glassy look. The aid and I looked at each other, and I told her, guess we're now leaving, as it looks like conjuntivitis, thw aid than asks me, "want to go see the RN, "nope, it's most likely conjuntivitis, and she will tell us to leave anyway, have a ncie Easter, good bye" Arrived at school at 12:30, gone at 12:35. Her eyes escalated quickly, tons of green and yellow goo, called the Pedi for eythromycin eye ointment, and will see him by monday if her cold-eyes don't improve. the bummer part that due to her Hep C meds, we can only use dimetapp very, very sparingly. I also bought strawberry Pediasure, as her appetite isn't the same right now, at least she can get protein and vitamins off of that, also bought kid protein bars. Who knows where this came from, school, mouth on the CVS counter, Childrens Hosp, shopping carts, who knows. All I know that she feels pretty lousy. She is still in bed, after 14 hrs. At least one nice thing came out of the chat with GI yesterday, he told me "I don't know your husband, I've known you for yrs now, but I want you to know that Matt is doing so phenominal, and Julia is making great strides because of you" I felt pretty good after that leaving that appt. Ashley and Matt are in great moods, both healthy today, and Ashley wants to go to Boston to the Museum of Fine Art, maybe, put Julia in the stroller if she's doing better, and Matt will most likely behave. Speaking of Boston, opening day for the Red Sox is on sunday in Boston, vs the NY Yankees, rivals forever, Go Red Sox!! Have a nice Easter!