Tuesday, February 23, 2010

Yesterday Juia and Matt had Dr's appt with the Developmental-Genetics Dr, and Ortho. I love this Dr office, an awesome staff, it's very family orientated, everyone there knows Matt and like him alot, so he hangs out with other staff while it was Julias turn. I brought in the "laundy list" for Julias issues, and tests and procedures she has had done in the past 6 monthes. Julias gait is still rather funky, she walks for the most part, like a marinette on strings, real floppy, unstable, can fall easily. The Dr's observed Julia walking on the balls of her feet, right foot turned in, leaning over, very loose tone, very loose joints and she snaps, crackles, and pops. Her kneecaps are very loose, move side to side, scoliosis hasn't changed. A few times my mom, sis, and I have asked a few of my friends their opinion about Julias gait, unsteadiness, weaker on one side, she keeps her thums tucked under her fingers for the most part in a fisted position. It was told to me last summer by the Genetics-developmental Dr that she suspects that Julia had a stroke at some point before coming the the US. Yesterday, I brought up that I felt that maybe Julia has a gait like a child with CP, she thought that was a possibility, but still felt strongly that Julia has a gait of a child that had had a stroke. The Dr said that if we really wanted to find out what Julias brain looked like, there is always an MRI, but it's not going to change anything, which is true, and with the Hep C treatments coming up, why bother right now. Get her stronger through PT, and her right side could be worked on more. Even though Julias has a Psych Dr, this Dr agreed with me that she feels that Julias ADHD-Impulsivity, we allready know, it's obvious, she never stops, moves 24/7, even in sleep. The appt was about 40 mins, had a nice long chat. Matt was in ultra show off mode, he knows everyone and they dote on him. His refelexes are still pretty non existant, he is doing well otherwise. Ortho felt Matt is doing good, knees are still dislocating and loose, loose joints, low muscle tone, scolisos hasn't changed, ordered c-spine, back, knees x rays which I'll get done this week. Matt loves going to the childrens satellite, he hangs out behind the desk, and doesn't mind x rays, "just a big camera" Matt is so direct, he told Ortho, "Think you're done bye bye now", he gets a kick out of Matt, has been his Dr for 5 yrs. I'm so glad that the kids have the Dr N for Developmental-Genetics, she is great, feel like I'm talking to a friend, she really listens, makes us so comfortable, not just "voice your concerns and get out" Geez, all ready time to go get Julia, and Matt from school.

Friday, February 19, 2010

The kids have been on vaca this week. The kids and I went up to Maine, to my sis place, had fun. they had less snow in Maine, I even ran out to the van in my sockds, as there wasn't any snow in their driveway, odd for Feb. My kids and 3 neices had fun together, had a nice time hanging out with my sister. Matt got a large splinter in his palm, we were at the ski lodge up there, ski patrol came over to try to get it out, still there, hope it comes out by itself quickly. Julia and I shared a bed, and Ashley and Matt had the twins beds while there, Julias sleep patterns just suck, she DOES NOT stop moving while sleeping. Sits up alot and tips right over, legs kicking, scratching the sheets non stop, moaning, groaning was loud, thrashing, grinding teeth, was tough for me, and I wasn't up for her falling onto the floor. At least it wasn't apnea related. Speaking of her teeth, 2 of her rotten fang teeth have fallen out this week. Frank and I went out last saturday night, great to get out alone with him. Julia is squawking about wanting her 5th cup of jucie this morning, little does she know, it's 3/4 water. The liver Dr said that Julias blood suger was on the low side when she checked her lab last time, but there wasn't any evidence of glucose in her urine last time that was done. either she's psyched she has unlimited access to fluids, or we'll keep an eye on her blood sugar. At my sis, I saw the movie, Twilight, it's the vampire series movies. I am not into those type of movies, thought I wouldn't like it all, loved it, now I need the book. the special effects were cool, the story, how it was filmed. Kids back to school monday, YYIIPPEE!!!

Monday, February 1, 2010

Had a meeting with our SPED district person, Julias Principal and SPED teacher last week about her going all day. The SPED teacher realizes that Julia is still making good progress, but she feels that Julia is not ready for kindy yet. She has trouble just sitting in a chair briefly for "circle time" in her room, her social skills are not very good yet, she will go and push other kids. Besides the pre school age work she does in the Early Child room, they arw working on teaching her more signs, social skills, tracing the letters of her name, identifying obejects in pictures, shapes, and the services she receives. We deceided that we would go month by month for Julias progress towards a full day of kindy, meet next month. The teacher would like to have her full day by May or Jyne at the latest, since it was agreed that Julia WILL be going full day from 8:45-3 for the summer extended day program for 6 wks at an amazing place called the Paul Center, it's down the street from us. For kids that have moderate to severe special needs. This will be Matts 3rd summer program there, he LOVES it! It's about 3 mins from home, they have a pool, only about 4 ft deep at the max, gym, art, music, get their services, there are teachers, OT, speech, aides. I love the staff that has had Matt, there is hardly any turnover there, which I like, and Matts teacher there is great, he knows Matt so well, and Matt can't pull any shenanigans there either, since "Everyone knows Matty" Julia will be in the same cabin, they follow IEP"S, so she will have a 1:1 aide there as well, scine she is a flight risk, safety hazard. Our SPED person told me that he is getting Matts amplification system for his class next week, which I'm glad about. Julias meds are now squared away to begin her HEP C treatment, just call the HEP C RN to see when we can get the ball rolling, as the meds should be here tomorrow. Matt recently had labs done, and some of his hematology labs are up and down out of the range, red flagged, guess I'll call the Pedi tomorrow and let him know, as his report will take alot longer to get to him, I all ready have them. Yesterday marked 6 monthes since Julia and I came home, that flew by. Time to go get Ashley at a friends house 2 streets over, will drive, I know, woose, but Julia and Matt will squawk that they're cold, and each will want to be carried, doubt it.