Thursday, July 29, 2010

time for me to get a little sentimental: Frank the kids have been home from Ukraine for a year on July 22, and Julia and I left her city of Kharkiv on the over night train to Kyiv a year ago this evening with our translator/adoption worker. 5:30 am Kyiv time, a year ago, would be on the train asleep after having some wonderful Ukrainian wine and chatting for hours with Angelina. Julia was pooping her head off since she had 3 types of parasites floating around making themselves at home in her intestines, but sleeping comfortable. that morning at the Dr's office in Kyiv, met a great woman from Texas and her adopted daughter. Rhonda, have to reminise again. July 31 will mark a yr sicne Julia and I got back home to Massachusetts, and she began her great life, we and she had no idea as to what was in store. She has done remarkably well over the past year, despite her significant challenges. Her birth parents really missed out, their loss is our gain. Seems ike Julia has been here for yrs. since last yr when Angelina (translator-adoption worker) said our crying good byes, we have kept in touch still via E mail and got her beautiful wedding pics, she knew we couldn't be there, but I was in spirit for her that day. I see a brand of cheese and /or yogurt called "Presidente: imported from France at our local grocery store, and we ate alot of that cheese/yogurt and I immedialty think of the grocery store in Kharkiv where we went grocery shopping there. where has a yr gone?

Wednesday, July 14, 2010

I finished Julias first annual report for Ukraine consulate in NYC. where has this year gone? She saw Neuro Dr yesterday about the EEG, and other questions we have. Seems the encephalopathy results are regarding the brain waves, one type of brain wave is much slower than for a child her age. The Dr felt that is was just from DS. I don't think that is right, and my instinct is telling me the same, I just don't buy that for some reason, just DS . Not that I'm a Neuro Dr, but Julia is so funky, such odd body movements, we have no pre natal history, early years in the orphanage, we do know there she was severly negelected, abuse going on. She still has staring episodes which the Dr asked about, about 2-5 sec, doesn't drop, lose consciousness, just stops, turns her head to the right, stares, and than goes on her way. He felt that we should have a home EEG, as the hospital one didn't pick this up, and if it shows seizure activity, than go the MRI route. I told the Dr that she is going into the OR for her teeth on the 23rd of this month, and maybe do an MRI than, as she will be out. Why sedate her twice? Don't think he was keen on that idea. We have all ready done the home EEG route with Matt when he was a baby, so that doesn't bother us, putting her under again for an MRI, bothers me. The issue of CP, he was on the fence about. He said that Julia has reflexes, kids with CP have diminished refelxes, "Well, our son with DS has nearly non existant refelxes and doesn't have CP" No comment from the Dr on that one. He did find an appt note from Ortho, slight hip bone (forgot the correct med term) flattening, common with DS, and common indicacator of a child with mild CP" the Ortho Dr also has a CP clinic. I have not seen that note but am requesting it today from the Ortho office. Neuro said "hum, that's interesting that Dr Z wrote that after seeing Julia" I told the Dr about julias vision, even with glasses, her head is up, and looking ahead, she still needs protection from walking into objects, as cars, walls, doorways, maybe a brain-vision issue? He thought there could be. other than her nearsightedness. The developmental-international adoption Dr seemed to be more into the possibility of the mild CP issue, as she really understand how Julias early years were living in the orphanage, no history about her birth mom pregnancy, labor-delivery, if she ever drank or did drugs during, nothing. The orphanage was tight lipped about any of this. Anyway I may E mail Neuro and ask about the MRI again, as we can get pics of her brain, as she will be under anesthesia for her oral surgery. Obviously something isn't right, and Neuro did mention that Encephalopathy is a brain disorder, the home EEG is the easy part. Camp is now on the ball of recording her staring episodes too. Ashley and Matt are doing amazing. I'm having my friends 17 yr old daughter hang out with Ashley for a little while this afternoon. YYIIPPEE!!

Tuesday, July 6, 2010

Where has a year gone? A year ago today we were in London for a day sicne we missed the one and only connection to Kyiv, Ukraine. The 9th of July was the day we met Julia. I don't think the orphanage would even recognize her as she has grown 6" and gained 5-6 lbs. her hair has grown beyond her shoulders, it was a bowl cut to the top of her ears last year. She is medically complex, like a 7 yr old toddler, but enjoying life. Her receptive skill to English is pretty good, easily follows commands (except for the toddler part when she wants her own way, selective hearing), loves school, and loves camp this summer. Yesterday was her first time ever in a pool, loved it! Her muscle tone is so very low, that she was wiped from working them in the water. She is significantly delayed in every area, requires hand over hand for just about everything, but is still making progress. I think of our translator/adoption worker, we keep in touch still through e mail. Think of Natasha and Vadeem, spouse drivers we had in Kharkiv, Vadeem driver in Kyiv, all so nice, and we all got along well. Been a year, but still seems so fresh. I know we will never forget them, all we have to do is look at Julia and reminisce. I really like the cities of Kyiv and Kharkiv, Ukraine. So old, some of the bldgs and statues, the Russian Orthodox churches were beautiful and ornate. I won't get into how I felt about the orphanage. So differant than anything in America, obviously a differant country, differant culture. We would like to get back to London one day. Ashley and Matt are great travelers, Julia would be annoyed. got to get some errands done, as Camp has all ready called that Matt is complaining of not feeling well, but talking about pizza. they re directed him and he was ok. Before they call again, and hopefully won't, gotta run.

Friday, July 2, 2010

We finally got Julias Ukraine passport returned, with a copy of the FIRST YEAR reports that have to filled in and mailed to the UA consulate in NYC. Where has this year gone? Julia and Matt are at the camp for kids with special needs down the street, and Ashley and I are hanging at home waiting for the hep meds to be delivered since I have to sign for them. Julias latest appt was the International Adoption/developmental Dr at Childrens. I really like this Dr, as she gives me insight as to Julias past orphanage living and what these kids can act, have post traumatic stress, attachemnt probs,behaviors, etc. In regards to Julias encephalopathy (brain disorder), the Dr suggessted that we get a school consult to teach kids with traumatic brain disorders/injury how to teach her more effectivly, throw in also teaching a child with autism, which the Dr feels that Julia show tendancies too, but most likely institutional induced not just about treaching a child with DS. I heard the words "traumatic brain injury" and wanted to cry. We have no idea as to how this happened and we never will. The Dr said possibly shaken baby, abuse, labor and delivery, her birth moms prenatal neglect. I also brought up the issue of mild CP, she saw Julia walk and her odd body movements and felt that this could be a possibility too, but Neuro would know betteras we see him next week. Just would like some answers, but she is still out little "Funkmaster B" Her self stimming behavior is increasing, but we try to distract her or try to show her how to look at a book, instead of waving it in front of her face, at least she can't do this with the large electronic toys. Well, sicne Julias meds are here, and Ashley and I don't have to hang out between the hrs of 9-12 waiting for it, we're heading out to enjoy this beautiful sunny summer day.