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.

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.

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.

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.

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!