Thursday, December 30, 2010
Julia went to the dental clinic at Childrens yesterday. Her teeth aren't good either. Severe over crowding, a tooth will have to be pulled so the front tooth can come in, it's huge for her mouth. At least the front tooth was seen on x ray, we eren't sure if she would have one, as it was 5 monthes ago it was pulled (baby front). she has 3 adult teeth waiting to come in for a space that has only room for 2. At some point she is facing more OR dental time. she will will have this baby tooth pulled next month, after visit to the toilet training clinic. Done with changing her, but still has to be done. she has no desire to use a bathroom on her own, no communication of "hey I need help to use the toilet". Shows no interest of caring if she is wet and/or poopy. We got help on that for Matt from the toilet clinic, maybe they can give insight for Julia AKA funkmaster J.
Tuesday, December 21, 2010
I was just reading some old posts from when Frank, myself, the kids in ukraine in July09, and when I stayed behind to tie up the loose ends of Julias adoption. Reading this brought back memories so freesh. Can't belive it's been nearly 17 monthes. Julias adoption had all ready been granted, Frank and the kids were going home seventeen monthes ago today. Little did I know that once Julia and I had arrived back to Kyiv, met a great woman named Rhonda and her daughter Lena at the Dr office there. she really brightened my spirits, as it wasn't easy being there pretty much alone dealing with Julias very difficult explosive behavior, and explosive diarrhea. I reflect on those days, it wasn't all bad. Really liked the city of Kharkov. We were there in summer, all the flowers blooming, people eating at outdoor cafes, having a beer while walking down the street. All of these people out in public, except for the orphans. I am still stunned when I recall the time at Julias. I won't ever forget some kids tied to a plastic toddler seat with a sheet, and a child just jumping into my arms, still attached to a chair, maybe hearing an unfamiliar voice that maybe this person will hold me snuggle me in their arms just for a few minutes. I untied her and did just that. the staff was not happy. I remeber thinking WTF, this is just NOT right. It's NOT right to see babies just laying in a huge crib staring at the sky, as that's all the stimulation they have, at least they were outside when we saw them and it was nice out. I know their is hardly any money, the orphanage had a huge veggie garden, they wash clothes in what looked like an above ground pool that was caving in, guess they just move the clothes around with a large broom handle, and hjang them to dry anywhere. they had an abundance of fruit trees as well. NOT right when Julia had post traumatic stress when we took her apple picking, as we had forgotten she had sat under the same apple tree for years, doing NOTHING. another woman posted on her blog, her adopted son from an institution did NOTHING! We are so fortunate in America, I think nothing here takes on such a differant meaning, than what Julia had, or my bio kids squawking "i'm bored" they really have no concept of nothing or what absolute boredom is. They didn't grow up having to self soothe themselves, pull their hair, scream, they didn't have to be in flight or fight mode all the time, they were not alone. Julia was, never had love or affection, complete and utter boredom, absolutly NOTHING! Not even an identity. she is now starting to realize her name. To this day, I wonder, what happened to the kids in her groupa, one was adopted and lives in the mid west. The poor, little, lost souls. Probabaly lost away in an institution, makes me cry. I have alos never forgottten the words of our translator-adoption worker, "if she gets left here, she will die" and that snapped me right out of my funk. I would really like to go on a mission back there, but maybe someday. I guess I left some of heart there. Off that soap box, on to the next. About 3 wks ago, Julia was sick with a sinusitis, and pneumona, she and I spent about 2.5 hrs in the ER, quiet as it was Thanksgiving, she was nearly admitted. Spoke with the pulmonary Dr about the chest x ray, seems she has a few more funky nodules in her lungs, we're and the Dr are ok with it, just keep an eye on it. He feels that her lungs are midly abnormal, but they work, she can breathe, getting good amounts of oxygen, so that's good. Next Dr I have to find for her is rheumotology, as little miss Funkmaster most likely has Raynauds, where the circulation sucks to the hands, fingers, and feet. they turn a splendid plum color, get very cold, as if she has been out in the cold winter air for hours without shoes or mittens for hours. this still occurs when she is inside with the home of 70 degrees. Usually the purple gets much darker if the outside temp is below 60 degrees. Her face, lips, mouth does not color so that's good. she has been showing some aggression to her class mates in school, circle time she has tried to kick and push a few kids, nice. Matt had a rough day last week at school, a one page note was wriiten about this, not just a few sentances. I felt bad about this, and shed a few tears. I spoke with the SPED teacher yesterday about having a meeting with the regular teacher, SPED, the aide (who is great with Matt), and the school behaviorist, about Matts ongoing school behavior, and being a personal space invader to people. He had a dental appt yesterday, not good. Charming Fellow will need major dental work, have to head in the OR for this. His bottom baby teeth are not loose, adult teeth are all set to come in, no where to go, severe over crowding, they all won't be able to fit. Top teeth same thing, except for the 2 teeth next to the front middle adult teeth are no where to be seen, probabaly won't have any in those spaces. At least he doesn't have any cavities, as somedays are teeth brushing battles. Lets see, can't forget Ashley. She is 9.5 yrs old, somedays going on 16. somedays she is so stubborn, yelling. Others she is just amazing, she likes to help me, she helps with Julia, she now can bring the dog in an out, feeds the pets, becoming more responsabile. I really enjoy being with her. I guess I shold go get some last minute errands done, 4 days until Christmas.
Wednesday, November 3, 2010
Seems lately the days just fly by. the last 2 wks have been filled up with kid appts and school meetings. Ashley went to the dentist today, 3 loose teeth, over crowding, no cavities, may need to see an orthodontist. See what the dentist says in 6 monthes at the next check up. she's doing great, have a school meeting about her tomorrow at 12p. Julia will see pulmonary tomorrow at 8am, so she will get to school at a decent time. hoping the Dr won't order another chest x ray, just go by the one from Oct. I don't want the Dr to order a pulmonary function test, where one blows as hard as they can into a tube, measures lung function. Ok Julia blow as hard as you can in here, she would give me the usual deer in the headlights look, she can't even blow from a bubble wand, never mind that test, NOT. At the moment she has a cold with greenies, hoping not a sinus infection, as her immune system isn't the best. Last week she saw her first school play, I went, and her class went by school bus to the high school. I thought it would be like a play for real little kids, it wasn't, it was pretty good, I really enjoyed it. Not kids from the high school, don't know where the actors were from. Had singing, music, dance. Julia was yelling out, "goo jah, goo wah" (good job, good work) Most of her sppech consists oif babbling, in english she says very well, eat, more, knee, mum. Her understanding of English is pretty good, she can follow commands, get things, helps, etc. Don't if she will ever speak coherantly. She is a nearly 8 yr old toddler, that looks like a 3-4 yr old. when I go to her school for something, and see her in the classroom, I realize just how significantly delayed she is, she more like a pre schooler. there is a little gal with Ds that is 5 in the class, and she just blows by Julia. I know all kids are differant, but as we know Julia had NOTHING, was sedated, and lived her first 6 .5 yrs of life in an orphanage where no one gave a shit about her. At least at school, the kids do make an attempt to speak to Julia, say hi to her, sit next to her, etc, even though she did not repond to them until I told her to wave. I was touched by that on the field trip. AAh, the charming Fellow, he is doing very well in school, was the cutest vampire ever for halloween, he's doing well too.
Friday, October 8, 2010
And...will soon have Juilias blood sugar and urine checked for diabetes, as she wants to drink, drink, and drink some more, and urinates ALOT to the point of her pj's are wet nearly every monring, even though we have her use the toilet before she goees to bed. Not sure if it's becasue she has unlimited liquids, I do dilute the juice, lemonade, so it's 75% water. In her previous life, she was probabaly thirsty all the time, not anymore. She will suck down an 8 oz cup in about 15 mins, and want more. Also since she will be 8 next month, yearly labs will be coming up, thyroid (TSH), CBC (complete blood count) hematology labs, and thalassemia (genetic anemia issue). Her labs were so out of whack from the Hep meds, but that was done nearly 6 wks ago so it should be out of her system. Always something, TGIF!
Julias IEP meeting went well. I'll send an e mail to the Psych Dr for an order for more speech at school. Matt got a 100% on his first test at school, he was so proud of himself, we were too. Ashley is doing better in math so far. We had a scare a few days ago about Julia, this is why. 12 days ago Julia had her 5m scoliosis/ortho x rays. I figured, I'll leave message at the Ortho Dr office, check on how they came out. I get a call the next day "this is Dr Z office, Julias ortho x rays are ok, can you call us back". I thought, oh crap, they don't ask you to call back unless something is wrong, that's what I immediatly thought of. I called back, seems there is a spot on Julias lung, and Dr z all ready ordered a chest x ray, he wants you to have this done ASAP, tomorrow. I thought I was going to barf, a spot on her lung, got all teary. She has been through so much in the short 7 yrs of life. The worse came to mind...lung cancer. Called the Pedi after having the x ray done, he said call Childrens hosp for pulmonary, go from there. finally I speak with Ortho, who had consulted with radiology, the "something" on Julias left lung, is an odd shaped blood vessel, that protrudes out, a 2mm circle on the end, he said it does not look like a tumor, we'll keep an eye on it, she needs scoliosis x rays every few monthes anyway. consult with pulmonary and get their opinion. Phew! We were very scared, HUGE sigh of relief, doesn't look like a tumor. She also has diminished lung volume, so that should be checked too by pulmonary. I called the wonderful woman that helps to run the DS clinic at Childrens-Boston, got the name of the pulmonary Dr they reccommend, and Julia has an appt with him Nov 4, at 8am. Frank will love that, getting Ashley and Matt ready and out the door for school, I have to admit, I crank with the morning routine. The 3 kids are doing well, go bring Sophie (sweet dog) in, she's out barking her head off, probabaly at the multitude of chipmunks and squarils we have this year.
Tuesday, September 28, 2010
Matt and Julia had ortho appts yesterday. Julia was her funky orthopedic self,. Matt has a history of bad knees, has had knee braces for years. He hasn't complained about knee pain for monthes, until he saw the Dr yesterday. His knee caps have taken forever to develop, they are the size of marbles currently. The Dr moved the knee caps over easily, Matt complained it hurt, the left one was worse, it slid way over, and popped up, all I said was "oh Matt, that hurt? Looked bad, like a marble that jumped up under the skin, looked painfull, he told the Dr it did hurt, but not as much as the right knee. Now he has knee tendonitits, Dr put Matt on restrictions of NO jumping NO squatting, NO kneeling, and get the knee braces again. I don't think signing him up for hockey for kids with special needs is a good idea at this time due to his knees., About 6 monthes ago, Dr thought that maybe we had crossed the hurdle of Matts knees getting better, and finally getting knee caps. The bigger and heavier he gets, there is a possibility of them getting worse and not being able to support him without pain. Tomorrow is Julias IEP meeting. I received some reports about her and school, limited attention span from OT, and her SPED teacher said she is hitting staff, and throwing her glasses. I wrote a long note asking about her behavior to her teacher and what they do in that event. She hits one of us at home, time out immediatly. The girls got their flu nasal spray this norning, Julia needs Ortho x rays tomorrow morning get her back to school. Fri: Ashley a yearly eye appt, and Frank will take Matt for his yearly thyroid lab. I can't control him anymore havibg labs done, he's strong, goes crazy, maybe he won't act up as much if dad is there.
Friday, September 24, 2010
Oh yeah, I do have to say that Julias receptive language in understanding basic commands in English is pretty good. We will ask her to do simple things and for the most part can follow through, can't say barely anything, babbles like a 14m old non stop. this morning as she was leaving for school, I said "Baka" to her which is good bye in russian, she didn't say it in return, but waved good bye, so she does understand, just can't speak for some reason.
Matt had school open house last night. I was impressed with his teacher, she was previously a SPED teacher before teaching "typical" 3rd grade. I do know that a lot of kids with DS have gone through her class. She told me that Matt is an asset to the class, his job every morning is getting his classmates to stand up and recite the Pledge of Allegiance, teacher said he also makes sure all the kids have their hand over their heart while saying this, or he will notice and tell the kids to do so. He is making friends, having good behavior (for the most part), participates willingly. So that was good to hear. Julia is still adjusting to the routine, have sporadic toddler tantrums, maybe a few "flop and drops" to the floor, trying to bolt, etc. I know every kids with DS is differant, their level of functioning, just like any child. When I look at Matt and Julia, and how their level of functioning is so differant. He is more like a typical 8 yr old, great expressive and receptive speech, good comprehension for an 8 yr old, carries on conversations, etc. Than I look at Julia, who physically resembles a 3-4 yr old, and she'll be 8 in Nov. I know somewhat about her life before us, know nothing about her birth mom while pregnant, labor/delivery, she was abandon shortly after being born, just left at the hospital, better than being left in the woods or a field. Transffered to the orphanage where she stayed until we came along, no love, negelected mentally, emotionally, physically, her brain being affected during her early years, poor vision. Sedated for a reason that is truly beyond me, for years. She is so tiny, despite having a big growth spurt after coming here last year. So significantly delayed, at nearly 8 yrs old, can't even get the concept of maybe coloring in the lines of a circle at school, just a little in the lines. I guess in the long run that won't really matter. As long as she can do the skills of getting dressed, bathing, personal hygeine,hopefully be using a toilet independantly one day, still in pull ups, no where near being toilet trained despite our best efforts, bathing, getting her basic needs of life met, and having some communication that will work too. She doesn't really need to learn alot about the world, just her world and how to get by in it. The things she has alot of trouble doing, we really take for granted. Off the soapbox.
Wednesday, September 22, 2010
Matt had his 8 yr check up today. He weighs 63 lbs, and is 4 ft tall. He will have his annual thyroid lab done by friday, it's always been normal, but sicne Matt has only grown 3/4" of an inch, do this ASAP. I really thought that Matt had a growth spurt, as he seems alot taller. Sicne taking him off the med he was on for behaviour issues/probs, now ADHD-impulsivity is rearing it's ugly head. I'll call Psych Dr and make an appt for Matt, he has one scheduled for Feb. but don't think we'll make it that long. There was a pretty med student in with the Pediatrician, so Matt went into ultra show off mode, was somewhat annoying. I totally forgot about Matts heart murmur, the dr felt was mild, but could still hear it. Frank rememebers the Cardiologist mentioning this years ago. Doesn't seem to bother him, so move on. On to a meeting with matts SPED teacher and his aide. Told me how well he's doing in 3rd grade, modeling after the kids in his class, just being fidgety. He acts up more in the SPED classrm and tries major avoidance tactics for the class work. It was a good meeting. I than went to Franks job and we had lunch together, than returned Ashleys shirt for a larger size, to Whole Foods and get Matt GF food, home, put out Sophie, sweet black lab mutt. Got the kids off the bus, and here I am enjoying a very warm 83 degree last day of summer in late Sept. I also talked to the Pedi about Julias thyroid and it has been elevated, her excessive need to drink water, lemonade, juice and urinating alot, her labs have to be repeated soon, and check for a genetic iron disorder. Bringing the kids out for a walk before homework starts.
Friday, September 17, 2010
The part about the med student didn't sound right as I typed it out. After the student knocked on the door, wrong room, the Dr's asked her if she wanted to hear about Julias story, she looked at the dr's and me for an invite into the room, before they answered, I said, sure, come on in, so she did. Matt had a great day at school. TGIF!
Julia and I went off to Childrens-Boston this morning for her appt with the Psych Dr. We get into the room, and there is a resident Dr for Psych alongside with regular Dr, sicne childrens is a teaching Hosp, that was ok. The Dr wanted Julias history from scratch from the time we arrived in Ukraine until we got home 14 monthes ago. After I was done answering the attending Dr questions, he tells me what an amazing thing we have done for Julia, and that we really did save her life, pat myself on the back for fighting for her to get meds back on board, even though the meds were completly wrong, so she wouldn't continue to have withdrawls, giving her life as she didn't have any. He reminded me of last year when he first saw Julia, the tiny, frail, sickly, malnourished, didn't even know her name, unable to make eye contact, just existing, no sparkle in her eyes, dull affect, less communication than she even has now, and seeing how she now has life, the medical care she has received, a loving family, she has really done well. I told him about the Neuro note, and how I interpreted that as all of Julias issues are DS related, I told the Psych I didn't think that was the case. I asked him if the antipsychotic she was on in Ukraine for yrs could have caused some degree of brain damage, he said yes, probably in her case, I asked about the possiblility of atrophy to her brain from severe neglect and barely any stimulation, "yes, this could be another possibility, and she has some abnormality of her brain as she is really unable to speak, even in Russian., just 2 clear words in English, eat and knees. The dr wanted to check this out more, and called Translator services, but the person that spoke Russian was unavailable, bummer. That would be interesting if she started speaking to him/her in Russian than we would know it's an English language barrier perhaps. Before we got there, the Dr spoke with one of his collegues, who had done his residency (many moons ago) in a Turkish institution, said it was a very scary place, and has never forgotten it and would it be ok to meet Julia, this other Dr eventually came into the room, very nice older gentleman, has worked in Eastern Europe, Israel, Turkey, Greece, has lectured around the Globe, etc. At one point he started to get teary, and left the room, and came back after hearing about Julia and how she lived. He was very moved by her strory. Than a med student knocks on the door, and says "oh sorry, wrong room", and the Dr's invite her in, they tell her of Julias story, she asks if it's ok to listen, guess the Dr's have the authority of who stays and go's, but I said sure, come in, the didn't object either. Turns out she is a med student in Psychology, and hearws about Julias story, the Dr tells her Julia has a brother with DS, who is a great kid, very high functioning, etc..etc. The student would really like to do a Psych paper on Matt and Julia, differances of kids living in the US with DS, and kids in Eastern Europe with DS, loving families V orphanage living. We will keep in touch about that, I don't mind. The dr also feels just give Julia some more time about her "funkiness" after all she has been out of Ukraine only 14 monthes. He feels that she is need of way more speech, he wants school to increase speech time, and see if insurance will cover speech for her and he will contact Children speech dept on our behalf for more. Also sees how she will do in the future, and think of some communication devices with voices for her if she's not really speaking. As we were leaving, the Psych Dr told me "maybe you should have been a Dr" I told him "maybe I should have". I felt pretty good after this appt, it was a really good thing WE, not just me, did for Julia, we really did save her life.
Matt had a tough day 2 days ago at school. His aide was out in the morning, so he gave this a run for her money. Walking down the hall, and Matt darts into the boys room, and turns on all the water faucets. There aren't any men around to go in, didn't want to leave him alone, and finally coaxes him out. So than he says he didn't use the bathroom, he has to go to the SPED room or the RN office. He chooses the RN office, proceeds to lock himself in, turned on the water, soaked himself head to toe, flooded the floor, and finally came out. I read this in his school note. I was surprised no one even called me. His clothes came home in a bag soaked, and weighed about 10 lbs from the water. He was happy watching Everyone Loves Raymond on his DVD player, than I told him the deal, took away the DVD player, he lost his mind, sobbing screaming, not fun. Thurs was ok, except his ADHD behavior was rearing it's ugly head, we weaned him off the med he was on, and hoping to keep him med free. Yesterday was a good day at school for him, hope today is too. Oops, have to get the kids off the bus soon. Julia had a very good appt at Childrens today, will type about this after the Banshies are home.
Friday, September 10, 2010
Today is Matts 8th birthday, can't believe it. I'll never forget the dreaded call from my OB-GYN Dr, "there is a possibility your baby could have DS" Than Matt was born with a heart defect called an AV Canal, when we found that out, DS took a back seat, we just didn't want Matt to die becasue of his heart. He had open heart surg at 2 monthes of age, and only weighed 9 lbs. God answered our prayers and helped guide the great cardiac surgeon, other Dr's, RN's, and other staff involved, and Matt made an amazing recovery, and was home in just 4 days. The baby with the dusky skin color was now a beautiful pink, not being exhausted just from a bottle. Fast forward, he has done remarkably well. He has the ability to make others around him happy and smile. He is loving, sweet, kind, nice, very outgoing, very charming, very funny, just an awesome kid who we thank God for. I love you Matt.
Thursday, September 9, 2010
I was reading this blog from last year while in Ukraine, realized that I was strong there, getting julias medication back, dealing with all her withdrawls, the boredom when alone, only had the adoption worker-translator to speak English with and we weren't together alot, just a few hours a day. The only to rely upon was myself, as Frank and the kids were home 10 days before us. In order to get home: train from Kharkov to Kyiv, Kyiv to London, and the last leg was London to Boston. I was so determined to get home, ran through Airports to be right at the terminal, people who saw me probabaly thought i was insane, or a good runner while pushing Julia in a stroller at the same time. Even though more than a year has gone by, still so fresh, guess the whole process, what we saw, and did made such an impression on me, and us. All 3 kids are at school today, Julia started kindy in the morning, SPED in the afternoon. The 2 buses should be here at the same time, Ashley got on her bus fine, and waited in the driveway for the small bus to get here, kept looking at my watch, no bus, finally at 8:50, and the bus hasn't shown with school starting in 9 mins, packed them up in the van and drove them to school. Don't know what the prob was, not happy, as the past 2 morning, the bus has been very punctual. Poor Matt, he was sobbing, "the bus..the bus..need it..want it.." tears flowing. Felt bad for him, but he will take it home. Guess I should get a move on, despite the banshies being gone all day, have to be home around 3, that will fly by.
Wednesday, September 8, 2010
Took the kids for a couple trips to the beach for school started. I took them to a small beach where I could watch Ashley collect periwinkles and stay knee deep with Matt and Julia in the water. School FINALLY started for Ashley and Matt yesterday, and Julia starts kindy tomorrow. I can't belive she started 4th and he's just about completly integrated into 3rd grade. They're happy to be back, Matt has the same aid from 2nd grade, she's great with him, I like her alot. I finally deceided that Matt and Julia can take the little SPED bus to school, so done driving them from last year this was my routine last school year: get Ashley on the bus, pack Matt and Julia up in the van by 8:40, drive him to school, bring Julia to school by 12:30. Afternoon left at 2:50 got Julia, 3:10 got Matt as they're at differant schools, get home quick to get Ashley off the bus at 3:35, not fun. Got the SPED bus all arranged for this year, checked out the town school website, swear it said "ALL staff, kindy, and students return Sept 7" Got Matt and Julia on the bus, and went to coffee with a friend when they left. Enjoying the peace when my cell rings, jump out of my skin, not a school #, it can wait. Head over to the school for Julias kindy orientation and listen to the phone message, I thought to myself, this numer is familiar but can't 100% place it, listen, my friend, AKA Julias SPED teacher, "coming to orientation, kindy starts thurs, but we will keep Julia here until you come in" They were ok with it, I was so embarrassed. I walk into school, nearly bumped into the Principal, he's really nice, "did you speak with teacher about kindy starts thurs, it's ok that you sent Julia in by mistake, I figured you were probabaly out having coffee enjoying the peace, as he knows Matt well too as he is at that school, he just laughed, so that was ok. He is my peer, so that was ok, think if he was much older, maybe wouldn't see the humor in this. Met the kindy teacher, she seems very enthusiastic, all of the kids that came in were familiar with the routine, as they all probabaly went to pre school and had a good head start, unlike Julia. There is an adorable little girl with DS in there as well. Julia refused to sit with the SPED teacher, new aide, on the rug, just me. The staff took the kids out of the classroom so the teacher could speak with the parents, poorJulia, getting her into line, she kept signing "mom" and babbling, I told she was fine, I'll be right here, ta ta, that's her words for good bye. Think she was a little stressed, new school, new staff, no aid from camp. Back to the bus yesterday, she saw it, refused to get in, screamed like a cat, almsot ran into the back of the van, tried to make a run for the house. Hopefully tomorrow will be better. She hasn't been in any other vehicle than our van. Great news on the Hep C front: we have eradicated the virus from Julias system, the weekly injections are done, last one was last friday, and the liquid med will be done this friday as well. She will need labs done in about 5 monthes and we'll go from there. Her thyroid level is still off, so that lab maybe done sooner than later, as it's higher than normal. Hopefully her immune system will be much better as the med clears her system, as it's surpressed now. I also took pics of the kids before they left yesterday for school. As I have typed on here before, Matt is quite the character, and can't get enough of "Everybody Loves Raymond" There is an episode called The Model, where Ray takes pics of Robert doing modeling poses for a portfolio, it is very very funny. Matt decides he want to do poses like "Robert Barone" he wanted pics taken in front of a fan like on the show, Matt was so funny imatating this episode, I was in tears from laughing, and taking some pictures. About it from here, I'm having some wheezing, coughing, chest has a little burning, hope it's not bronchitis again, fine otherwise, life is good. God Bless America.
Tuesday, August 17, 2010
Julia finally had her dental work taken care of on July 23, we didn't have to stay overnight, but was a real long day. We left home at 9am, returned by 6:30-7pm. She had her teeth cleaned, 4 extractions, cavities filled, gums were ok fortunatly, scrapings, and x rays. She had a post op appt July 30, dentist felt all looked good, and will see her in 3 monthes. Camp ended Aug 5, which meant a month out before school starts. We went down to Cape Cod for a week of vaca. We went to the beach alot, explored, the Cape Cod Museum of Natural History, wherwe Matt and Julia were on the obnoxious side and had to be taken out, but Ashley really enjoyed it. We tried to wear out the kids everyday. Today Julia was scheduled to have a home EEG to see if she is having seizures, as school, us, Ashley, and camp had noticed her staring, even though it wasn't picked up on the hospital EEG last March. Leads are placed on her head, and we push a button when we see her stare. That would show if she is having seizures or her funky self. After reading the Neuro Dr post appt note, I deceided to bag it for now, canceled it. I didn't want to drag Ashley and Matt in there. The Dr note said that he didn't think she has CP, but has an abnormal gait,with staggering, and twisting of wrists and arms in close or halfway extended, closing of fists, cranial exam was remarkable since she has glasses with vision challenges, but Dr didn't stress what that was, and that the Encephalopathy was just.. DS related, depite not knowing Julias previous orphanage or birth history. If the home EEG shows no seizure activity, no further follow up needed. The Dr note meant to me that the Dr didn't seem concerned at all, despite his use of "abnormal gait with staggering, crainial exam was remarkable (whatever that means), and just DS" So this can wait too. I may contact the International Adoption/Developmental Dr and get her input. As she felt that we should get a consult for school for children and school with brain injuries. She also felt that the Encephalopathy is not "just DS" when we spoke in June, this was befoe the Neuro appt. Julia has her last Hep appt, hopefully on Aug31, she will have labs done at the hospital and that will tell us if she is DONE with Hep C, and that this 6 month treatment has successfully killed off the virus. She will need to have labs 2x a yr, than once a yr, than every 2 yrs for probabaly the rest of her life. Matts 8th birthday is in 3 wks, what to do? I think he wants to go to the movies, or get gluten ree pizza with some friends. We;re heading out to the western part of the state where there is a HUGE Yankee Candle store, they have theme rooms, gazillion candles, dip candles to make, it can take about 3 hrs just to browse around, the kids really like it, Julia could care less, think she may get a little over stimulated, but just give her a few jelly beans while in there for a distraction. They even have Santa Claus in there, Matt never fails to ask for a few seasons of DVD's for "everyone Loves Raymond" he has also asked for Bruins hockey tickets too. The Banshies are watching Sponge Bob Square (crappy) pants while i type. Shut that off and get moving.
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.
Monday, June 21, 2010
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!
Monday, June 7, 2010
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!!!
Tuesday, June 1, 2010
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.
Thursday, May 27, 2010
Jlula is becoming quite the self stimmer, and having more repeatative behavior. She was using a small plastic bucket shovel to tap on her lips, granted throw low muscle tone in the mix, did this for a good 45 mins, tried unsuccesfully to distract her. She would go back to get the shovel, I finally put it away, figured 45 mins was long enough. Now she has been stacking 2 small can of black olives over and over for 35 mins, just loving it. She also methodically open the velcro straps on her sneaks, open them closes them back and forth to each sneak can do this for quite a while. Oh well, could be worse, at least she's not hitting herself. Today Matts school has a a music assembly, where they sing Patriotic songs in honor of the Vets sicne it's nearly memorial day. We live near a National Park, the Old North Bridge in Concord, MA, this is where the Revolutionary war began Apr 19, 1775. It's such a nice park to walk around, and alot of history. Julia and I went there for a walk yesterday morning. I'm looking at the statue of a Minuteman, thinking, the local Minutemen-Patriots began their fight for their freedom from the British Monarchy, and than I heard a loud sound, knew it was a Fighter Jet from the local Air Force Base, it flew over our heads so fast, low, and loud that I covered Julias ears. I thought this is where our freedom began, and continues on today. I know America isn't perfect, but I'm proud to be an American, God bless our troops, and God bless America.
Wednesday, May 26, 2010
Julia has a new dental surgery date of July 23. Frank has that friday off from work, no worries about help. Julia has an appt at 3:15, June 24 at Childrens-Boston for the International Adoption/Developmental Dr, and it's alos the first day of the Extended School year at the Spec needs camp down the street. My friend has the day off, she will pick Matt up there, and hang out here with her daughter, Ashley, and Matt until Frank gets home. Matt will be so excited. This will be the first day that Julia will be at Camp nearly all day. Currently she goes to school 2.5 hrs in the afternoons. Camp is from 8:45-3p, they all ready have an aide for Julia. I presume that Matt will have the same aide as last summer. Julia will see the opthamologist fri, be interesting. It's either a brain-eye connection, but it seems to be getting worse, she is nearly walking into walls in the house,which is odd for her becasue she can navigate home pretty easily. I have to protect her and keep my arm around her shoulder to direct her as she will walk into almost anything when we're out, and that's with her head up, as she prefers to look at the ground when she walks. the first eye exam was a battle, think friday will be too as Julia does NOT like anyone to touch her face at all. Battle to wipe her nose, get her hair out of her mouth, clean her face, etc. Matt is doing well still fully included in his 2nd grade class, Ashley is doing great in 3rd grade. School is over next month. this school year flew by.
Tuesday, May 25, 2010
I feel better now. A friend stopped by, after we had passed one another while driving. She lives down the street, has a teen son with spec needs, and a daughter Ashleys age, so they're friends. She is more than willing to help next time something comes up, she's very nice, even to get Matt at school, he would be thrilled. She and her husband are going to Nice, France next week, he is traveling for business, and she will go, be there for a week. Her parents are staying at their house, I'm so happy for them, as they deserve a break, and time together. We'll be back up for my friends parents, as their kids know us well, and we're about 3 mins away.
I just cancelled Julias OR dental appt. One of my wonderful friends, who is an RN was able to switch a day with one of her co workers, for Julias dental surgery and help us, as she was about to go speak with her boss, this co worker deseided she couldn't switch. Our parents can't help that day, I really don't think they want to help anyway. All they would have to do is give Matt lunch, help him pull up his shorts and undies if he had to go to the bathroom, and sit on your butt with a remote, or at the table in our yard. Frank can't take the day off, and I can't bring Matt into the OR waiting area, or the PACU. We basically have no help, my siblings work, I didn't bother to ask them, since they usually say no too. Our siblings couldn't even make it to Ashleys communion, why the hell would we ask them for help anymore. I have to stop being so nice to my family, help them, it usually comes around to bite me in the ass when I need help. I have been in contact with the OR coodianator at Childrens to get Julias teeth done, and I'm sitting here in tears because her teeth suck, rotten, decatying, cavities in every molar, and had to cancel when all was in place for next week. I guess I'm just jeolous of some of my friends that have kids with DS and other special needs, who have families that help when they really need it, and that not in our case. I know our kids are our responsibility. Off my soap box. Have to bring one of our very old cats to the vet today, as I couldn't find her the other day for the previous appt and she is an indoor cat. She's about 20, so I was hoping she wasn't dead under a bed somewhere. Brought the other 14 yrs old cat last week, he has slight elevated liver and cardiac issuesnow. At least the 7 yr old awesome black lab mutt is very healthy. Beautiful, Julia just refuxed a huge puddle on the rug, go clean it, wipe the tears, and move on.
Tuesday, May 18, 2010
Julias dental Or appt is still in the works. My mom and Franks folks can't help watch Matt for a few hrs, until our friend can get Ashley off the bus. Matt doesn't take the bus (as of now) so the parents can't pick him up, it's so easy to get from school to home, nearly a straight shot, about 7 mins. So a great friend of ours is an RN, and she has offered to try to switch with someone at her job, she will get Matt at school, and get here to get Ashley and her daughter off the bus, stay here until Frank gets home from work. She and her husband were so supportive to Frank last summer while I was in Ukraine tying up the loose ends. She really went out of her way, and I will always truly appreciate her kindness, our kids really like her alot, especially Matt. Otherwise I would have to cancel Julias Or appt, as I can't bring Matt into the PACU. Julias language skills seem to have really developed alot this past week, she says alot more words, as well as she can say them, and is following directions in English very well lately, Look at the time, time always flies while on the computer, she needs to get to school.
Thursday, May 13, 2010
Julia has her dental OR date for June 1. Matt doesn't take the bus yet, so I drive him back and forth to school. We have to keep him out of school that day, as I can't think of anyone that can pick him up and bring him home. A friend has said that she will watch Ashley and Matt, but she works until 3p, her daughter and Ashley are friends, and they are on the same bus, so she will get the girls and babysit until Frank gets home from work. Hopefully Frank parents will babysit Matt from about 11 to 3:45. My mom is having a breast biopsy 4 days earlier, and doesn't want to help me. So, I'll try one more friend, and maybe Matt can hang out with her, and she could maybe bring him home. If Franks parents, my friend fall through, guess I'll have to cancel. the OR is booked for monthes out, and it could be possibly 4 monthes from now. I'm praying Frank parents can hang out with Matt for a few hrs. Speaking of Matt, this is so cute: His aide and teachers have deceided that Matt should go in the main door to school just like all the other 2nd graders. He walks in with some kids from his class, and the aide walks behind him. This morning, I got to school before his aide, I parked, and brought he and Julia to the school sidewalk, waited for her. Soon 1 girl and 1 boy from his class, walked up to Matt, "c'mon Matt, come with us", he's walking in the middle of his friends, the aide and I are walking behind the kids, the little girl rests her head on Matts shoulder as they're walking, and he put his arm around her shoulder, so damn cute. Reminded me of those cute greeting cards with the kids pics in black and white. The aide and I looked at each other, "aww". So great to see Matt walking into the main door of school with his friends. He has been spending all day fully included in his 2nd grade class, except for pull out services. I'm so proud of him. I also requested that his current aide can move on with Matt to 3rd grade, she wants to, and so does Matt, and she will for 3rd grade, I'm happy about that. His aide this year has been great with him, and he knows what he can and not get away with, she really likes Matt too. As for Julia, this afternoon is her meeting for next yr school placement. We have all ready deceided what we want her plan to be, and ALL DAY!! Yesterday, I met with the Psychologist that was to administer Julias neuropsych test. He wanted input on her before that day. He asked a ton of questions, and than did a parent questionaire on your child. I guess I'm used to Julias behavior and delays, until I get questioned about them. After answering the Dr's questions on this test, I thought, Julia sounds like a 14-18m old mentally and physically. I asked him if that was qwhat he thought and he said yes. So since Julias is so significantly delayed, I can't have the test done with this Dr, as his tests are for kids 3yrs and up, mentally. He asked if Julia could do any testing as a 3 yrs old, "no, I don't". He said he will call around, speak with colleagues to see what can be done, and will call me in a few days. I also asked him about the social, people in her world, and her palce in the world paer of the test I answered, and he also felt that Julia most likely ahs autistic tendancies as well. I told him that her Psych Dr from the hospital said the same thing. The Dr I was speaking with asked me who her Psych Dr was, and I told him, he said he did his residency with Julias Psych Dr, small world. So for now, no neuropsych test in the works, until we find somone that administers testing to children 1 yrs and up. The Dr mentioned another Childrens Hospital about an hour away that does this. Ashley has a softball game this evening. The other night, I was standing with another mom, and Julia was in a stroller, Matt was sitting in a chair with our friends husband. We were standing at the edge of mulch in the driveway of the town housing apt bldg, as the field was right in front of it. This woman from the bldg walks over to us, and tells us "the older women from the bldg want to tell you that your trespassing, and if you even try to put chairs out, they will call the police" What, and she repeated herself, WTF! So we didn't open our seats. I called housing the next day, and the woman that I spoke, said I have no idea about this, I will find out who was sitting in the looby tues evening from 6-7:30 during your daughters softball, accept my apology, and it's completly acceptable to put out chairs where you were" Like Matt can stand for 90 mins, technically we were trespassing, but out in the middle of the driveway or being loud and obnoxious. Ashley will be making her First Communion this saturday, she will look so pretty.
Tuesday, May 11, 2010
I deceided to show Julia more pics of last summer at the orphanage, to see of more reactions would happen. I came across more pics of the orphanage, pics of her, the bldg where she lived, the donkey (yes, you heard right, that would wander the grounds, 2 of them to be exact), she didn't see anything, minimal emotion. Than came across pics of her groupa, the group of the kids she was with, and the caregivers. When she saw these pics, became so sad, her eyes were welled up with tears, didn't say anything, just stared, her chin started to quiver, and tears started down her cheeks. She wasn't aggitated like the previous post, maybe she really did have some kids that really liked, and hadn't thought of them until the pics I showed her. One awesome little boy with Ds, blond, blue eyes, who was also adopted by a great mom and now lives in Kansas, he was the whole pic, extreme close up, but she started to laugh when looking at him, so he must have made her laugh sometimes, we got a kick out of him too. Have to bring in the dog, she's barking her head off for about 4 mins, sweet thing, spoiled black lab mutt.
We think that Julia is getting a latex allergy, as the regular band aids give her a mark that gets so red, and can still see the mark a week later, not red, light beige. I bought first aid paper tape, and latex free band aids for her weekly injections. I must say that her Hep labs are still going well.
I was just looking at a blog where a family had just adopted 2 girls from the same orphanage that Julia was in. the mom took alot of pics from Kharkiv (where we spend a month last summer). She took pics of the orphanage, I showed Julia these pics. Before she walked to the computer, she was babbling to herself in a normal regular voice, tone. She got a look at the pic of the bldg that she lived in before we came along. I wondered if she would have any reaction to the pic, any memories, anything, as she was sedated. She looked at it, started pointing at the pic, started yelling and saying something as I had no idea, maybe Russian for all I know, than backed away really fast. Doesn't seem like good memories to me, if she reacted like that. Than went back to playing with her toys, babbling like normal. Tomorrow, I'm meeting with the Psychologist that will give Julia a neuropsych test, so I can fill him in more. The same Dr has given Ashley and Matt these tests too. Julia will be way more difficult as she is basically non verbal, responds to English so that's good. She can say a few words, but hard to understand if one doesn't know her. I asked him if he was up to the challenge, and he is. We just want to know where she is mentally and developmentally, get a baseline. On thurs have a school meetingfor Julias placement for next school year. There is a school in town where she can get ABA therapy for the autistic tendancies, stay with the SPED teacher she is with now and put Julia in with first graders, so they can model good behavior for her, and try to do ehr work in that class. Obviously she is doing pre school or lower work, but at least she would be in with her peers. What we have deceided is that, I have talked to Matts SPED teacher, who I also really like, and she is more than willing to take Julia into her class, she can do the ABA with her, and the behaviorist that goes into her classrooom also does ABA, I know her also quite well, as she has been helping us with Matts behavior. Matt has done so well this school year, that she wants to have Matt 90-95% inclusion into 3 rd grade. She feels that Julia and Matt can be pretty well seperated due to schedules, and with him having so much inclusion, Julia and he would rarely cross paths in the SPED room. If school feels that Julia isn't ready for a full day, will fight that one too. She is going full day to the summer program for kids with special needs down the street from us, 8:45-3, she will be 8 in Nov. Than we will have to find somewhere she can go all day. Anywho, speaking of Julia, need to get her moving and ready for school.
Thursday, April 29, 2010
Can't belive another month has nearly passed, marking Julias 9 monthes since we came home from Ukraine. Sicne Julia can be a little on the funky side, we affectionatly refer to her as "funkmaster B" In the past few monthes, her behavior seems to be getting a little funkier, as we thought maybe we are seeing some "red flags" for her being on the autism spectrum. I E mailed her Developmental/Genetics Dr about this, what we see, etc and she felt it was likely. The kids had a Psych dr appt 2 days ago, the Dr felt that Julia was having some "autistic tendancies" during the appt, but didn't want to diagnose her as of yet, give this more time and see if these "tendancies" will go away. I thought to myself, well, Geez, she's been here for 9 monthes, not like I was bringing this up a month after we returned. Both of the Dr's suggested ABA therapy, which I have heard can really help kids on the spectrum, which Julia could receive through the school system. The Dr's would give me a script for this, no problem, not sure if school would want the full blown diagnosis of autism. The Psych Dr wants another opinion from the International Adoption/Developmental Dr, as they work together, the other Developmetal Dr does not work at Childrens Hosp. Julia sees the International Adoption/Developmental Dr late June, will also see Neuro in July for the encepalopathy, always something. Other than that, she is having a good day, except starting to get anxious, hovering near the grocery bags like a hawk/vulture. Guess I should get the ball rolling and get her ready for lunch and school. Matt and Ashley are doing great. Life is good.
Thursday, April 8, 2010
Julia saw the Hepatologist 2 days ago, she felt that Julia was doing well, despite her cold. She has lost 2 lbs, she now weighs a "whopping" 34 lbs. Her appetite has been down, probably a combo of the meds, and her cold. I bought strawberry pediasure, which she likes. We had to get out of the hospital fast after Julia had labs done, as the kids had a 1/2 day at school. the 2 hr-25 mile drive in during rush hour to childresn-Boston was only 40 mins on the way home. Yesterday, I was outside relaxing, reading the 3rd installment of the Twilight Saga books, and the phone rings, school RN calling about Matt. Seems "charming Fellow" took a "header" from the grip of his teacher from the monkey bars. She was holding him up to reach the monkey bars, he fell out of her arms. The RN tells me that he's fine, no change in mental status or level of consiousness, no complaints of pain, no dizziness, no egg on his head, he didn't say that he saw "two of everything". The things one would look for after falling on his head. I was very concerned becasue Matt has a history of cervical spine probs, been on head, should, neck precautions for 4 yrs now. After I hung up from school, I called the Pedi, who agreed to order neck-back x rays, dismissed Ashley and Julia early from school, got Matt and went for him to have x rays. He really was himself, no complaints, no bruises, no egg on his head. I was so stressed. X rays were negative, and "normal" for Matt. He is NOT going on the playground structure or monkey bars anytime soon, or at all. He is not well coordinated enough. Kept him home today to keep an eye on him, as he hit his head, no signs of anything. He is just psyched to miss a day at school. Scared the hell out me. Another good thing, just heard from Julias Hep C RN, just after doing the Hep ctreatment for a month, the virus level is nearly non detectable in the last lab Julia had done 2 days ago. We're, or should I say Julia is on a great path as eliminating this sucky virus from her system. She is very clingy and a little annoyed this morning, as she is not used to "sharing" me with her brother during the week. she will get snippy, look at him, and try to hang on me. Typical siblings. Ashley started softball last night, the first practice, she loved it. Funny, she has the same number that I had when the last few yrs when I played town softball, not in the dark ages.
Friday, April 2, 2010
Matt had an appt with GI Dr yesterday, he feels that Matt is doing "phenominal", and he gave Matt a Scooby Doo comic book, Matt was so happy, as he loves Scooby and the GI Dr. It was cute, while checking Matts belly, GI would call him the "big boy" and tickle his stomach, and Matt would laugh hysterically so would the Dr. See the Dr next year for Matt. I asked him a few questions about Julia, as GI covers livers too. I asked him about her labs, so he got them on the computer, seemed a little perplexed as to why one LFT went up, and the other down, but we chalked it up to Julia just on her 3rd week of Hep treatment. He told me to relax and let "them" (Dr's) take care of the labs, I told him "can't do that, the labs get E mailed to me, and enquiring minds have to know" He said, well, if it was my child, I would have to know too, so that ended that idea. While there, Julia began the sneezing, greenies from her nose, beautiful. I thought she was at the beggining of a cold, I thought well, one afternoon at school and than a long weekend, as the kids have school off for Good Friday. We walk into the lobby of school, the eyes start draining greenies and yellow drainage, and have that glassy look. The aid and I looked at each other, and I told her, guess we're now leaving, as it looks like conjuntivitis, thw aid than asks me, "want to go see the RN, "nope, it's most likely conjuntivitis, and she will tell us to leave anyway, have a ncie Easter, good bye" Arrived at school at 12:30, gone at 12:35. Her eyes escalated quickly, tons of green and yellow goo, called the Pedi for eythromycin eye ointment, and will see him by monday if her cold-eyes don't improve. the bummer part that due to her Hep C meds, we can only use dimetapp very, very sparingly. I also bought strawberry Pediasure, as her appetite isn't the same right now, at least she can get protein and vitamins off of that, also bought kid protein bars. Who knows where this came from, school, mouth on the CVS counter, Childrens Hosp, shopping carts, who knows. All I know that she feels pretty lousy. She is still in bed, after 14 hrs. At least one nice thing came out of the chat with GI yesterday, he told me "I don't know your husband, I've known you for yrs now, but I want you to know that Matt is doing so phenominal, and Julia is making great strides because of you" I felt pretty good after that leaving that appt. Ashley and Matt are in great moods, both healthy today, and Ashley wants to go to Boston to the Museum of Fine Art, maybe, put Julia in the stroller if she's doing better, and Matt will most likely behave. Speaking of Boston, opening day for the Red Sox is on sunday in Boston, vs the NY Yankees, rivals forever, Go Red Sox!! Have a nice Easter!
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
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.
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.
Saturday, January 23, 2010
Thursday afternoon was eventful. Get a call from Julias school, "can you come get her, she cut her finger" with her Hep C went right to get her. Seems she got a good cut on her thumb in OT while using kiddie scissors. I thought those couldn't cut skin. anyway, I get there, and it's a good gash, and ended up having to take her to the ER becasue of Hep C and not sure if would need maybe 2 stitches. The Dr put on surgical glue, antibiotic for later, and bandaides and soem gloves and sent us on our way. I was fortunate enough to drop off Ashley at her friends house so she didn't have to to the ER, went to Matts school, dismissed him sicne there was no way to get back home in time from an ER and pick up Matt, and get Ashley off the bus. We left the ER at 4:15, hustled things, and the kids, took out the dog, and we all left to get my neice and drop off Julia with my sister, and try to get to the Bruins game by 6:40, got to the Boston Garden by 6:30, got our tickets, and headed over to chat with the woman about Matt and the Bruins. Matt was very stresses about the noise level during the game, Frank and I took turns walking him through the halls. Finally time to see the Bruins before the start of the 3rd period. We were told, "have to be quiet, no calling out their names, as they concentrate and think when walking back out to the ice, just smile and wave" Gave Matt the run down, he was ok with that, than the Bruins come out of the locker room, they came right over to Matt, "hey pal...hey buddy..having fun tonite..how are you doing...etc, and than they would do "knuckles" with him, even the coaches, he got a game puck too. I found out one of the players has a child wth DS, he came right over to Matt, told him he was awesome have a great time, knuckles a few times. There is a player with the last name of Bergeron, Matt calls him "blood drawn" He yelled to him a few times "Blood Drawn, I'm over here" Nice name. After they were gone, we were walking back to our seats with the womna that brought us outside the locker room, and she introduced us to a player, he was in street clothes, so we didn't recognize him, he was really nice to Matt too. Had a great time. Matt was so excited and thrilled to do "knuckles" with the Bruins, was priceless. Julia was sort of a wild banshie at my sisters. Now she really understands when I told her Julia is a 7 yr old "toddler" and needs constant supervision. got home at 11pm, and were beat.
Thursday, January 21, 2010
Tonite is the Bruins game, Matt is so excited! Julias appt went well yesterday. I was really stunned about her height and weight growth. sicne coming home July 31, '09, she has grown 4" and gained 4 lbs! She does not even look like the little mal nourished, tiny, sickly, barely able to walk child of last summer. Her hair has doubled in length too, can actually put it up now. As for the plan of action for her treatment for Hep C, I only have to inject interferron into her thigh once a day, which will be in the evening when Frank is home to hold her down, and than she goes to bed at 7:30, which is shortly after he gets home, she can try to sleep away side effects, if she has them. She will be taking another med, ribovarin 2x day in liguid form. She will get labs drawn once a month, monitor heigh & weight, side effects. The RN is calling our insurance to get this approved, and she said our company has never turned them down for Hep C meds, she will be in touch in the next 2 wks, Julia and I will go back to Childrens, with her meds, and they will teach me more, I will inject Julia with the precense of her new Hep C RN's, and go from there. This will be a 6 month treatment plan, and monitor this very closely. I'll be praying that she will have awesome labs, and get this crappy contagious liver disease slowed down, and hopefully eradicated. I thought Hep C was always there, can slow down the progression of this. The RN told me that so much research is being done on Hep C that this combo of drugs can possibly eradicate the virus. Julias labs will have alot to show if this will work. All we can do is try. I have been wondering lately regarding Julias drinking fluids, and urination output. She wants to drink ALOT, she sucks back about 8 0z in about 3 mins, and than hands me her cup and signs "more", she would be asking for about 4 cups (8 oz) about every 15 mins, and than have a saturated pull up in about 60-90 mins, than a freinds calls and says her son was doing the same thing, he also has DS, and was diagnosed with diabetes. I mentioned this to the Dr yesterday, and she looked up Julias last glucose, and felt it was low, and asked if it was the day of her T & A, and was she NPO (nothing by mouth), so we opted to do a urine test for her blood sugar, see what's the deal with that. Also we will have to keep more of an eye on Julias Iron levels, as she is anemic too while on her HEP C treatment journey.
Tuesday, January 19, 2010
tomorrow is the day that Julia and I head into Childrens-Boston for her hepatology (liver) clinic appt. Think we maybe starting her treatments for Hep C tomorrow. I will be learning more about Hep C, the meds she will be on, side effects, and how to give her the injections. We have been fortunate that Frank got some contracting work not far from home, so he will be here in the morning to help me hold her down, as I'm sure Julia will freak. If the injections need to be timed, I will have to get help to hold her down, won't be safe to do this alone, for her or me. I have all ready read alot about Hep c from a really informative book I borrowed from the library. I will get further teaching tomorrow from Julias Dr, who alos happens to be the director of the Hepatology clinic, she was very nice to us. It just sucks that Julia has to go through this, as no fault of her own. Last night Frnk and I were laughing on our reminiscing of our trip to Ukraine last summer. Have alot of good memories, even Ashley and Matt have good memories, and they ask for Angelina (translator/adoption worker) Natasha and Vadeem (wife-husband driver team in Kharkov), Olga (Facilatator), and Vadeem (Kyiv driver) Matt tells us frequently that he is going back to Ukraine to see them, and he's going to the apt we stayed in while in Kharkov, and he's going to the restaurant near the apt for Salmon. One comment Olga said while we were all walking the streets of Kyiv, that "Matt was making history freely walking the streets of Kyiv, one never sees a child wth DS out for a walk, and not just a child being adopted" Sure, being alone there for 10 days after Frank and the kids left was hard, not scary though. Hard to belive 5.5 monthes ago we were in Kharkov, 2 days away from court date, and Julia was just hanging in the orphanage. Now I have to get her off to school, she really has done a 180 degree turn.
Sunday, January 17, 2010
We are in for an exciting night on thurs, Jan 21. We received an E mail from the Mass chapter of the American Heart family of kids with congenital heart disease. the E mail asked for a short story about kids with CHD that love the Boston Bruins hockey team, play hockey, and a ncie story about hockey and your child. Matty is a HUGE fan of the Bruins, so I sent in a little story about Matty, he watches the Bruins, doesn't like to miss a game on TV, starting to learn the players names, DS and his heart, where it was repaired, etc. This woman sent me an E mail stating that this coming thurs Bruins game is "healthy heart night", and would Matt like to "high five" the Bruins as they step onto the ice to start the game! I told him, and he is thrilled!! He started yelling "Go Bruins!". We are a family that are Bruins fans too, so we are very excited. My sister will take Julia, as she would not tolerate having to sit in her seat, over stimulated, probably cry and /or scream, say "aw dah" (all done") about every 30 seconds, like taking a toddler to a hockey game. So, my sis will take Julia, and we will take her 11 yr old daughter, and she and Ashley and Matt get along really well. My neice is also a huge Bruins fan, will tell her today that she is coming with us. As for Julia, she found a plastic spoon somewhere, and will not part with it. she is still in panic attack mode over food. She has begun walking with her heels off the floor, not way up, just the heels about 1/2" off the floor, and I noticed some staring episodes yesterday, only a few seconds, no thrashing, no twitching, just blank. but said her name about 3-4x before she looked at me, and I was about 4" from her face. I think I'm going to make an appt with the Eye Dr for her, as she saw the Optometrist last time, and she couldn't figure out tge script Julia needs for glasses, as Julia was fighting, screaming, hitting, kicking. Maybe he would have better luck, but he could possibly be in India right now at a clinic for the poor, but making an appt won't hurt. Guess I should really look up a Neurologist from Childrens. Get the kiddies some breakfast.
Friday, January 8, 2010
Another week of school is over. I returned the call to our SPED district person regarding Julia going to school all day, left a message, playing a little bit of phone tage. He said he is working on getting Matt the FM hearing devices that the Audiologist and ENT Dr have reccomended for his 2nd grade class, due to Mattys bilateral mild hearing loss. I called our awesome Audiologist and she will call the SPED person on tuesday with her reccomendations. I forgot to mention that last tuesday I got a call from the Genesis fund, they support the kids Genetics Dr office and their employees, and other things they do to keep things afloat there. The events manager and told me that Papa Gino's (a huge pizza-and other foods) chain is putting together a coupon book, and some of the proceeds will go to the Genesis fund, and could they use a picture that they have of Matt and I from an event a few yrs ago on the cover. I really like this pic, it's Matt and I face to face, nose to nore. The same pic that they put on their brochure. so, Matt and I are going to be on the cover of the coupon book, with a few other pics, across New England, cool. Matt has done alot, he has dropped a puck to start a Boston Bruins alumni charity game, have met Ken Hodge (local hockey legend from the 70's Bruins that Matt thinks is great), he had a pic taken of him at Fenway Park (where the Red Sox play baseball) on a commerical on local TV channels for a golf event, we have gone to Fenway Park a few times, and have been able to take the field, he was in a Boston newspaper for a holiday story a few yrs ago. Speaking of the kids...for the past almost 4 yrs, we have been involved in a program through Boston Univ med school where 2 students come out to your home, learn about the kids med issues, and realize that our life is more normal than not, teach them about kids with disabilities, what we hope to teach them so when they go into practice they will see these kids in a differant light, and their parents. Matt sure can tell one what his issues are, what EKG's are, stethascope-otoscope used for, Celiac disease and why he has to be gluten free, why he's on prevacid, about his knees being dislocated, why he uses orthotics etc...etc. He'll be a good teacher to these young Dr's to be.