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!!

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.

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.

School is over for the kids. Matt and Julia will go to a special needs camp down the street, all day, for 6 wks, they will start this thurs. It's a great place, this will be Matts 3rd summer there. I think Julia will do ok, this will be the first time she will be away from me for 6 hrs straight since coming home last summer. Update on Ashley: she is such a great kid, helps out with her siblings. She made her first communion in May, played her first year of softball, her team became her age group champs last saturday, she was proud, so were we. She had a great year of 3 rd grade, doesn't need reading group at school any longer, as she now tests above average in reading/comprehension. She recently turned 9 2 days ago. It is hard to believe that double her age, she will be a young adult of 18 yrs. I truly enjoy being with her. Matt: had a great year of school this year, has learned alot, he can be such a good kid too. His speech is awesome, as his GI DR said in a note, "Matthew is doing extraordinarly well, from a medical and developmental point of view" When Matt went to Childrens-hosp dental clinic last week, he would hold open doors, eleveator doors for people, he was so polite. His adult teeth are coming up on the bottom, but baby teeth aren't loose, so we'll see what happens naturally with that instead of getting him into the OR, if possible. the dentist than told "this is highly unusual, don't see any adult top teeth (on x ray), we'll give it time, and hopefully they will come in" HOPEFULLY is right! We were able to get Matt off of prevacid for reflux. He is doing quite well. Julia: the hep is nearly gone out of her system. She is still very little, weight is 36 lbs, and about 3.5 ft tall, she is the size of a 3-4 yr old, her clothes are 4-5 shorts/pants, 5 shirt. We are seeing the International Adoption/Developmental Dr thurs, as it's been 10 monthes since Julia saw her, and the Dr wanted to see her. The Psych wanted me to consult with this Dr for the autistic tendancies since it is most likely related to Julias early years in the orphanage, the negelct, and so on. She babbles alot now, her receptive to english language is 23 monthes, and her expressive language to English is only 17 monthes, as the school speech/language woman tried to test her. As we hear about bad, abusive, international adoption stories, we think that after Julia being her nearly a year, could be a success story. she is very attached to us, yells now and again, but as a toddler would, likes to be with us, she likes to be held, hugged, will seek us out if she needs something, will seek us out if she takes a spill and is crying. She does have a very high tolerance for pain, since her early years, if she was hurting or not feeling well, no one probabaly cared enough to take the time to help her, so why bother to cry. She doesn't rock anymore, after being released to my custody last year, she would rock for hours, and suck her fingers, still suck them but just in sleep. I think she really likes life now, and she has a normal life, full of love, affection, caring, support, and all that a kid needs. As for Frank and I, he loves his new job, I may look for a PT job in the fall, as the kids will be in school all day, even Julia. We are all healthy, happy. Life is so great!

I spoke with the Hep C RN this afternoon, we have SUCCESSFULLY eradicated the virus from Julias system. She will still have to finish the 24 week treatment plan with meds and labs. I was so chocked up with a lump in my throat and tears in my eyes. I also brought Julia to get glasses this morning. We were finally able to get a right script for her eyes. She ddn't flght or scream, like the last eye appt. I asked the optometrist about the glasses script, she said "not to get you very worried, becasue these glasses should really help her to see, but her nearsightedness is so bad, it makes her vision very poor, she is most likely in constant blurred vision, and can't most likely see beyond 3 feet" I was annoyed at the eye Dr appt, becasue we were there for almost 2.5 hrs, since they were so behind, I didn't ask about the script. Wow, wow, wow!!!

spoke with the Psychologist this afternoon, regarding the parental intake I did before the Psych test that we didn't do. He tallied the results, she has the mentality of a 18-24 month old toddler the Pscyh Dr gave me 3 names and numbers for Dr's that can give a neuropsych tests for children that have the mentality of a toddler. Not surprised in the least.

Julia had another hepatology appt this morning. The Dr and Hep RN feel that Julia is doing well, her labs are going in the right direction. The previous labs showed that the viral load has dropped alot, and this is a step in the tight direction, but the labs that she had drawn today, will determine success or need to continue treatment longer than what we tried for. The Dr felt that Julia will only need labs once a year for about 3 yrs, and than call it quits, if all goes well. She's into the hospital rputine now, and doesn't freak about going there. The Dr just thought it was a little odd that Julias BP was so differant the 2x we took it on each arm. Today was the first time I didn't put Julia in the stroller from the garage to the hospital, she was fine, didn't do the "flop and drop", no lousy behavior. We were waiting to check out from the appt, and a teen girl approached me, "I just love kids with DS, she (Julia) is so cute, she 3?" I told that Julia was 7, she was adopted, and so on and so forth, she began to cry, "why wouldn't her parents want her, she's adorable, at least now she's in the US with a loving family, and asked if she could give Julia a hug" the girls mom was in tears, think some of the staff, and the parents in the waiting area. Very touching. Made my day. Not some of the jerks that just stare. I think Childrens Hosp is one of the few places, where no one gives you a 2nd look, unless they comment how cute my kids are 10 monthes ago today, I woke up in my own bed after spending a month in Ukraine, and now a family of 3. Today at the appt, Julia was measured, as every, for height and weight, her height is now 3-5", she has grown 5" in 10 monthes, since leaving Ukraine, and has gained 5-6 lbs. Hearing thunder in the distance, guess I should put out the dog before a storm. Oh yeah, Ashley doesn't have to go to reading group at school, where she received help, she now tests above average in reading and comprehension, awesome. Matt is doing great too.