Sunday, November 22, 2009
Oh yeah, Julias 7th birthday was Nov 16. I know that our kids get so excited about their birthdays. to Julia, just another day, no idea even what a birthday is, got annoyed when we all sang Happy Birthday to her. We knew she probably wouldn't be thrilled, but we wanted to remember it was her birthday, and just that a peice of cake would make her day. My kids want everything for their birthday, and all Julia cared about was a peice of cake, what a comparision. She also lost her first tooth the other night. Fair amount of blood came with it, go into Hep C precaution mode. We got out the gloves, gauze, cleaned up the mess with bleach. Kept the kids clear of Julia for a while, until the bleeding from the tooth stopped. It just really sucks that she has Hep C, sucky contagious liver disease, which we could contract from her blood. Any sign of blood, even a scrape, precaution mode, if it's still light out, we clean up any miniscule sign of blood outside. I hear the 3 Banchies coming, guess quiet time is over.
Julia has done a little bit of regression this week. She has taken off her pants and pull up and squatted and urinated on the floor, at least it wasn't the furniture, on the laminated floor. She wasn't too happy, since we had her clean up her own mess. She is not toilet trained, and this is what she would do at the orphanage, stop where she was, urinates on herself and than move on her way. We thought we were making some preogress, as she had either stood in front of the bathroom door, make some sound to get our attention and we would bring her to the toilet, made the sign for toilet and we would praise her alot and bring her to the bathroom. hopefully this will turn around this week. She will NOT drink out of any cup, she used a sippy, or we would help her with a regular cup. We had used an oral syringe to fill up with juice after her tonsils-adnoids out as to keep her hydrated, since she refused to drink. This is her new mode of drinking, from the syrnige. She will become dehydrated if we don't. She throws a major fit if we even show her any sippy, or regular cup, or glass. She just opens her mouth ike a bird. She loves lemonade, so today we will let her try it again, diluted with 1/2 water. We were told, any citrus juice hold off on, for at least 10 days, been 9 days post op, we'll give it a try. Let her get a taste, and maybe today she will use a cup. She has also been wanting to be fed, and than signs "eat" frantically, but won't pick up the fork, and than has a tantrum. She is able to feed herself, may need a little help here and there. A few times we have caught her just doing a face plant into a plate like our dog would do, nope, and there is another fit. Maybe she is imatating the dog? She has gone back to the begging for food as well, she begs more than the dog. Thought her food issues were finally starting to ease up, back again. Maybe it's still the throat hurting, she can't tell us, maybe this is why she is acting up? Today is the 9th day post op, see what today will bring. We are all going to a benefit hockey game for Mass DS Congress vs The Boston Bruins Alumni. Hopefully Julia won't lose her mind there and maybe actually enjoy herself. As I said, today is another day.
Wednesday, November 18, 2009
Julia has been quite miserable since saturday. I realize she is hurting from her tonsils out, mad sicne she can't have the crunchy food she likes. She has once again regressed to hitting herself on the head with a an open hand, or punching herself in the head, tantrums lasting for over an hour, crying, screaming, stomping her feet, hitting her head into the furniture pillows, throwing herself at the couch, only once she did try to bang her head into the floor. Goes off an on through out the day. After her recovery from tonsils, if this behavior continues, we will be asking the Psych Dr if she should go back on the med for the morning. She has also been drooling alot, her gait seems to be off some, ? finding a neurologist, as suggested by 3 Dr's. always something!! Now Julia and I are going to go get Matt gluten free donuts.
Sunday, November 15, 2009
Thurs afternoon after dropping Julia off at school, I went to the store to stock up on popsicles, ice cream, juice, lemonade, etc as fri she was going to have her tonsils-adnoids out, and maybe ear tubes if needed after her impacted ear wax removal. I felt bad for Julia fri morning, as she couldn't eat or drink, except a tiny amount of grapejuice for prevacid (reflux). She was beside herself trying her hardest to steal her siblings breakfast and their glasses. They were good, trying to hide that they were eating before school. She was screaming, crying, hitting her thighs with her hands, tantrums galore. She just didn't understand. Couldn't get her out of the kitchen, like a boomerang, and would be stnding directly behind you, standing in front of the ;frig screaming, hitting it too. So when it was time for Matt to go to school, packed him and Julia up, dropped him off, and she and I headed to Childrens Hosp. She was fine, until we got into the lobby, bagan signing frantically "all done" screaming, hitting her thighs with her hands. It's one of the few places where no one stares at you when your kid is losing their mind and having a breakdown/meltdown. We checked in to pre op, and went to the Entertainment center to play one of the 2 80's pac man machines to play the game. She loves the sounds, and sights of this game, she colored, looked at a few books. Lasted for about 7 mins, than hysteria for about an hour until we went to the OR holding area. The Anesthesiaologist loved Julia, he held her, rocked her in a chair, played a Dora toy with her, walked with her around the waiting area. He was so nice to her, the nurses doted on her too. All the Dr's and nurses were so interested in Julias story, and I told them to go on RR and check out the adorable kids on there. So after all was signed, and I carried her into the OR, was with her until she fell asleep from the gas I left her in awesome capeable hands of the team taking care of her, and the wonderful ENT Dr. Walked out to the parking garage, got our bag for the night in ICU, and a sandwich, I was hungry too, but I couldn't eat or drink in front of Julia, that would be cruel. Back up to the family waiting area. ENT Dr came out an hour later, as he said he would, we chatted, and he said Julia did very well, cleaned out her ears, NO FLUID, NO TUBES. she came out of anesthesia very well. I saw her about 15 mins later, she was wide awake, not freaking out, still a little out of it. She began drinking about 45 mins later, never looked back. UP in ICU, she chowed on jello, numerous popsicles, alot of juice, in the evening had scrambled eggs, cold mashed potatoes. We ended up in cardiac ICU, as that was the only available spot in any of the ICU's. We walked around the floor alot, the staff loved her, asked about her, told her story, one nurse had tears in her eyes, told them to go on RR and check out the kids. The staff loved her, doted on her. We came home yesterday afternoon, and she still is doing well. She hasn't snored loudly when we have checked on her. Maybe some decent, uninterrupted sleep from having her tonsils out will help with her behavior a little, time will tell I guess. this morning, she is herself, panicking in the kitchen, glaring at the 'frig, etc. Next major OR procedure will be her dental work, cross that bridge when we get there.
Thursday, November 5, 2009
I just thought to myself, wow, Julias tonsiladnoidectomy is a week from tomorrow. Maybe than she will be able to breathe better, sleep better and hep get rid of the black circles under her eyes. The Dr told me that her tonsils are extremely large. I learned my lesson of taking Matt home one day after his T&A, just see how she is doing after, but are definativly staying one night in ICU post op, which is fine. ENT said we could stay as long as I felt comfortable to leave with her, and of course, how Julia is doing. When Matt had his out, ENT wrote orders about how I preferd things to go for Matt, and could stay as long as we felt neccasary. Great to have such an awesome Dr on our side. I remember when I asked him if he was taking new pt's before we even traveled to get Julia, he said he wasn't, asked why, and than said as a favor to me he would take her. Anywho, Matt went to Childrens-boston dentist yesterday, seems my charming fellow is in need of OR dental work too. He has severe crowding of his teeth, and no baby teeth are loose, so some may have to be removed to make way for adult teeth. Insurance will love them, they may need to stay in ICU post dental surgery, he with his cardiac status, and her rotten, decaying, plague, cavity filled teeth extensive work. Ashley has nice teeth, and a regular kid dentist office. Ashley had her IEP meeting this morning, that Frank went to, his first school meeting. I'll go to Matts next week. Have to go get one of Ashleys friends a b'day present for a party on saturday. We are going to a Radio disney show, sponsored by the Boston Bruins and childrens-Boston cardioogy for a few hrs saturday, and Ashleys has a party. Guess hit the road, Julia is all ready fidgeting with ehr coat and getting annoyed sicne she is having trouble with it.
Tuesday, November 3, 2009
Julia and I went to the Psych Dr at Childrens-Boston this morning. He felt that Julia has done so well with transitioning to her new life, picking up signs, going to school, he wants to get her off one dose of risperdal, so she will just have it t night. Hopefullywith this med to help her sleep better, and the tonsils-adnoids coming out to hopfully eradicate snoring and apnea, may help her behavior as she won't be so tired. Another good appt. We also ran into the Developmental-international adoption Dr that was a wonderful help to us last summer when Julia was in crisis upon her arrival, getting meds evaluated for her etc, she thought that Julia was doing great too. We had some time to waste between the psyche appt and pre op, so we went for a walk. Harvard Med school is 2 bldgs over from the hospital, and they have a pretty campus. Last year at this time, whoever would have thought little orphan Julia would be walking through the campus of famous Harvard Medical School with a mom. Off to go get Matt from school, and take him for an eye appt at a Childrens Hosp-satellite. Psych felt that Julia was doing well, he feels that she will be talking well by the time she's 9. On the road again.