Last friday I spoke with the Dr regarding Julias EEG results, no seizure activity seen, but abnormalities were. She was diagnosed with Encephalopathy of non specific origin" basically, a brain disorder but don't know what type it is, or when this started or what happened. the Dr called Neuro dept at childrens, and she will see Neuro sooner than later. Luckily, we can go to the closer satellite to see this Dr. Funny, I called about getting Julia in, "Dr C is booked for about 6 monthes, and the Dr that ordered the EEG got us in 2 monthes. I figure, no urgency to this appt as she is just her funky self, except from 4p on today. Julia began her Hep C treatments, she was fine until about 4pm. The dry heaves, sure there was nausea even though she can't say, had 3 large bouts of diarrhea, shaking, chills, fever, went to 102.9, Her skin is mottled, like a lacy doiley, the lacy parts are usually light pink, they turned purple, her hands were darker than usual. Now she is sleeping, and her fever has come down a little. I feel so bad for her, the med combo is so strong, and her getting this nasty virus is no fault of hers, but she has to suffer through it for the next 6 monthes of treatment, labs will tell. The Dr's here feel that she most likely got this through a dirty needle, but we will never know how or where, can only try to eradicate this from her system. Hope she can sleep easily through the night and not get sick. Ashley and Matt are doing great, and very sympathetic to their little sister.

Just heard from the Ortho Dr office, Mattys c spine x rays haven't changed, stay on head, neck, shoulder precautions. this will be the 3-4 yr with these precautions in place. No trying to play hockey for him next season. Matt was hoping "if neck better better, maybe play hockey" Not. We were hoping that this would change for the better, staying the same is better than getting worse. Matt has been saying his stomach hurts, films also showed "moderate amount of retained stool" guess it's time for some miralax for him. Still waiting on Julias EEG results, maybe I'll have to call the Pedi, who can call the ordering Dr. Her Hep c treatments starts in 5 days. I'm not worried about giving her an injection of interfferon once a week, the liquid med 2x day will be easy, I read over the side effects, and it's a page long of possible ones. Maybe I shouldn't worry now, she's not on it yet. time for Katies school taxi service to start, gotta run.

Last night I was going through Julias adoption papers that we received while in Ukraine. I was rummaging through them to find the Ukraine consulate office in NYC for the phone number. Anyway, I found the letters written by her parents, which I perceive as abandoning her to the care of the state-country. No, I don't know their circumstances, presume it was sicne Julia was born with DS. No one had ever seen her or visited her from her family, no one. I realize that having a child with Ds or another disability there is like a curse, no services, nothing. Matt, and now Julia are so fortunate to get the services, medical care, and education that they receive living where they do. I guess Julias ultra dark brown eyes are from her birth dad, he has no idea of what a beautiful daughter he is missing ourt on, his loss, but now she has a real dad, who loves her unconditionally, sees Julia, not just the kid with DS, he sees a child that has made significant strides sicne coming to the U.S. Get off my soapbox and get her ready for school. God Bless America.

Oh yeah, Julia can now say "mama" and signs it at the same time, that's our girl!

Julia had an EEG done yesterday morning, as she has had numnerous staring episodes that last just a few secs, but was noted from 2 Dr's appts last summer, that they had seen this as well. See what those results hold. Julia and I were up at 4:15am as she was suppossed to be sleep deprived. I told the woman that we were very lucky that if Julia were to fall asleep, Getting the leads on Julias head was difficult, as I thought it would be, took about 45 mins to get her ready, at least the fighting made her a little more tired, our fiesty one. I think Julia fell asleep for about 15 mins, tossing and turning, but the woman that did this got about 40 mins of data. I'll call for the results either today or tomorrow. I may call the Developmental-Genetics Dr today regarding Julias gait again, as last week she saw her with her feet turned in, as did Ortho Dr. and an odd gait, it's quite off today. Her right foot turns in more when she walks, the left one is starting to, she has nearly fallen over a few times from less than the usual balance, leaning over to the left, so I have been walking on her left side to catch her if need be. We went for a walk, she was tripping over her feet, and fell 2x, and began saying "ome" which is home so we turned around, not like we had walked far, I carried her 1/2 way as she was crying. This is really odd for Julia, as she is a child that is in constant motion 24/7. and likes to walk. She is content right now, putting puzzle peices back in the box. Matt got his new sound system for his classroom, due to his mild hearing loss. The SPED teacher called, and said they had used it in the regular class, and Matt freaked, covered his ears and bolted from the room, in the hall he was shaking, crying and told the teacher and aide "way to loud, can't take it" He can't tolerate assemblys at school, or anything real loud, he gets terrified, at least they tried., Matt wouldn't return to the class until he saw the system in the bag and be put away.. Even when we went to the Bruins game last January, he loved meeting the Bruins, since by the locker room area it was quiet, he couldn't take being in his seat, because of the announcer volume during the game. Ashley has the book fair at school today, she loves to read, so we gave her a few bucks for books. The snow is nearly gone in our yard, and with it shows the lazy slobs that throw their trash out their car window in the corner of the yard, but spring is right around the corner.

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.

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!!!