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.