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.
Tuesday, January 5, 2010
Matt had a Psych Dr appt at Childrens hosp, had to take Julia as there is no one that could stay with her. I asked the Dr about the possibility of Julia having ADHD after describing her perpetual motion nearly 24/7, wanting to run non stop, her attention span is so-so, unless it's something that reallt is of interest to her, other than her insane obcession with food. We feel she does, see what the Dr says about he next appt. The Dr feels that we should get the school behaviorist back on board, as he has had some regression and other behavior issues. This way we, can school can all be on the same page. The school behaviorist is great, she has helped us alot before. Both kids behaved well, had Julia in the stroller, as she listens less than Matt, and will try to run anywhere, she's smaller than he is, so it works. We stopped at GI to make sure that Julia had the appt with the hepatologist this month, ran into the kids GI Dr, his comment made me feel so good, "you have been through so much with your kids, it's not going to be easy with the Hep C treatments, but I know you can do this, you're so strong, smart, and can take care of her through what needs to be done, you're amazing" I felt a lump in my throat. After that, I swore I heard my name, we ran into Julias nephrologist (kidney) Dr in the lobby, . She's so nice. Will just have to monitor Julias blood pressure, and the size of her kidneys, as they are small. I was surprised she remembered Matts name, we only saw her once. She told me "I'm really good friends with Maureen (liver Dr), and if something comes up and you need me during Julias treatments, don'hesitate to let me know I;ll come by the clinic" Feel like I was talking to a friend, not just one of Julias Dr's. Matt chimes in, "you're pretty" She told Matt he was handsome. He was speechless, which belive me, doesn't happen hardly, if ever. Dropped Matt off at school, and got Julia lunch and took her to school. Tried to get the van oil changed, but the line was long, go after I drop Matt off at school tomorrow. Call the dental clinic too. should have stopped there this morning while at the hospital, oh well.