Friday, March 26, 2010

Julia likes to spin a plastic tea cup on the kitchen floor, went to check on her, and whoa and behold she is sitting next to big puddle of reflux, lovely. got back Julias latest labs yesterday, out of whack. Her LFT's (liver function tests) are one has increased, while the other has decreased, WBC (white bllod cell count) is nearly at 0, knew this would happen with the med combo, platelets have dropped significantly as well, since she is at a higher risk of bleeding, bruising, and she still tumbles alot, trips over her own feet, balance is off, the norm for her. I felt I should tell school, as colds, strep, are going around. I know they are getting uptight about it, but if they see a kid sneezing, coughing, just go the other way. We have had the colds, sneezing, congestion come through the house, and she is the only one that didn't get it. right now I have bronchitis, coughing, sneezing, congestion, sinus infection, some fluid in my right ear, the kids have brought in 2 colds recently as they go to differant schools. Maybe she is able to fight off viruses easier than we are, and possibly being exposed to so many other viuses in Ukraine, her immune system is tougher, just a thought. i hope she stays healthy (as to be expected), but this morning she and I picked up a script for this crappy bronchitits, and she put her mouth on the edge of the CVS pharmacy counter, disgusting, I didn't see her do this, but the Tech did "oh Julia (sad, they know us first name basis) don't put your mouth on the counter! I nearly gagged, who knows how many microscopic critters were crawling around, nasty! Ashley had MCAS test in reading this week, she felt she did well. As we wished her good luck for MCAS, Matt "Ashley good luck for Comcast" Guess bi lateral mild hearing loss will have one hearing close to what you have said. It's ncie to be outside again, buds can be seen on trees, and our shrubs, can see tulip stems in the backyard, starting to see alot of buds on the Lilac and Hydrangeas too, nice.

Wednesday, March 24, 2010

I was recently looking at Special Olympics for Matt, but athletes have to be 8 to start. I saw all of these countries listed, and noticed Ukraine was on the Special Olympics list, so I clicked on it, was written in Ukrainian or Russian, but had some very nice pics of ahtletes with medals around the necks, athletes and "typical" folks together smiling, they are listed as being in Kyiv, with numerous people to contact. Ireally don't understand how there could be special olympics there, as folks with disabilities are locked away in mental instituations, the horror for those people and children, or if they are living at home, aren't seen. I met a woman in Ukraine, whose friend has a child with DS, lives at home, but never goes out anywhere, what a life. I guess, at least the child isn't in an orphanage or a mental institution. Even though Julia left her orphanage nearly 8 monthes ago, and stepped into the real world, I think somedays she is still amazed at what she sees. I can't believe that we have been home nearly 8 monthes, when I think about the trip and process, it's still so fresh in my mind. If I'm in the grocery store, and see "Presidente cheese" I think of Kharkov, as we ate alot of Presidente yougurt, reminds me of being at the grocery store there, and seeing that brand of cheese amongs the 500 differant types of cheese, I didn't even know existed. If I ever, which I know I will never, drive there, I bet I could still get around the city of Kharkov, Ukraine and know where I would be going. Unreal, how one place could have such an impact on our lives, all I have to do is look at Julia and the memories come back. I met a very nice woman from Texas there, and her beautiful teen daughter she and her husband were adopting from there as well, she is so nice, and is heading back for another beautiful teen daughter, Rhonda, if you read this, you're amazing. I think of her usually every end of the month, as we met in Kyiv, at the American Embassy, and that lousy Dr office. Guess I'm a little nostalgic today, guess it's near the end of the month, marking Julias 8 month here and how much she has accomplished. Her hair has tripled in length, grew 4" gained 5 lbs, don't think the orphanage would even recognize her now.

Tuesday, March 23, 2010

Right now, Ashley has her friend over, they became friends in kindergarten, and now they are 3rd graders, she also has DS. This was the first time she has stayed by herself, and doing great. she and Matt also know each other, as they are in the same school, and same summer program. She shows so much tolerance, and patience, unlike to her own siblings. Cute, to hear the girls laughing, and Ashley isn't freaked that Matt is playing with them too. She has a good 20 lbs over Matt and Ashley, and just fell on Matt while giving him a hug, oh man, Matt is yelling off now, can't breathe. Maybe the 3 banshies can relax and watch Hannah Montana before mom comes back to get her. Speaking of banshies, Julia threw a big tantrum at school, with a blood curdling scream, it was raining out and she couldn't go outside. A few teachers even looked out of their rooms to see if all was well. Oh well, can't always get what you want. Julia is such a toddler, even though she is 7. At the moment she is laughing and spinning, than falls to the floor. Her Hep c treatments are going ok, she varies with side effects. Today she had her blood drawn, every 2 wks, did ok with it. Per Hepatology (liver) Dr, she felt that we should consult with endocrinology regarding Julias TSH, (thyroid stimulating hormone), as the level has gone from 3.88 last Oct, normal to 8.77, the high end of the lab ratio is 5.7, so it's a little on the high side. See what the Dr has to say after the E mail I sent to her. I bought some supplies for the Reeces Rainbow vendor table at the Massachusetts DS Congress conference this coming saturday. I'm usually a registered participant, but this year, I felt it's the right thing to do.

Tuesday, March 9, 2010

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.

Thursday, March 4, 2010

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.

Wednesday, March 3, 2010

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.

Tuesday, March 2, 2010

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.