Ben's bloody feet

Ben has been convincing his school aide to loosen his straps. no wonder he cries all night when we tighten them and put on the dorsi strap. His feet are regressing. he has pressure sores. we have an appointment to go back on the 18th and I will not be one bit surprised if he pops him back into plaster. nope not one little bit. Big brother has also been loosening them at night. and here I thought we were doing so good with sleeping! Turns out he was only sleeping because someone in his room was loosening the straps. Sophie's feet on the other hand are just fine. not a spot on them. wears her boots 24/7 and dorsi straps at the lines with little to no complaint except that sometimes her sock gets caught in her toe but that has been ongoing since she came home. So far tonight Ben has been medicated and he is still in there screaming for the last hour. it will not be a good night. He cried all night last night and all morning too. I sent him to school anyways where he promptly got his way and they loosened the straps. he is a stubborn boy. and he has gotten his way too many times with this. I dont think he is really in that much pain but he wails because he wants us to loosen them and we wont. he didnt cry when I put them on. he didnt cry until I took him to his bed. if it was so horribly painful wouldnt it hurt when I put them on? I feel like a real shit listening to him cry and scream as if someone is trying to murder him.

in other news the boys broke the bunk beds....again. Ethan was jumping on the top bunk. yes stupid idea. broke the slat supporting it and fell right through to the bottom bunk. scraped his back up good. maybe he learned a lesson. maybe Mom knows a thing or two when she says dont jump on the bed. I am about at the point that we toss the beds when we move and put their mattresses on the floor. the ladder on one is broken and no longer hooks to the bunk as well as has one tread broken off. one slat on the other is broken. the girls bunks are both broken. top AND bottom. Chrysta sleeps on a mattress on the floor because she had the last bunk before it broke.

Diana and Andre went to dentist today. Diana has one more appointment and got a tooth pulled out. she was not a happy camper. not one little bit. but I did take them to the store and let them spend some money they had. boy were their sibs nice to them when they got home. they wanted to play with the new toys! Jaeger had fits because I gave his snowpants to Diana and gave him the bigger ones. he did get over it and wrote his name inside the new ones on the tag. Well I guess Ben has been screaming long enough and I have to go and talk to him. again.

smokin gun!

I found and printed off the Mn Dept of Ed website about how they HAVE to evaluate Andre even if it must be in his own language. they have to evaluate him in whatever way gathers the most information. and it specifically addresses english language learners.(for which they have done NOTHING to help our kids as ELL students) I will bring that with me when I go to the meeting on Friday. Then when they hand me their line of bull about him having to be here for 3 years I can show them that nope thats a lie. evaluate my kid. Eric is going with me so that will give me strength and he is very diplomatic with people. We say diplomacy is the art of LETTING the other guy have it YOUR way. he can say things in a way that makes you think you wanted that all along. too bad he doesnt use that more often in his parenting! (I do it plenty, less so now that the kids are getting older but he used to be amazed at the things I could get them to do when they didnt want to)


Today is Ben and Sophie's IEP meeting. his teacher (and myself) want him to keep his aid for the rest of the year. they work well together. and he is soooooo slow walking that they cant wait the rest of the class for him to get where they are going. she also helps him academically and I dont know if he would be where he is if he didnt have that one on one help. he is meeting all standards and benchmarks. I dont know if he could do that alone....

the fight continues!

at conferences we again addressed Andre's need of extra help in the classroom. we were again rebuffed. we have a meeting set for Friday. Eric is taking an hour off from work to go with me and present a united front while they tell us all the reasons they can not and will not address his difficulties. They tell us he hasnt been here long enough. its probaby language. not learning disabilities. but looking at the other 3 here the same amount of time and all doing much harder work and they are THRIVING. I tried to teach him addition today. he is 7. I showed him 0. and then added 1 cell phone to the same place. How many is that Andre? how many cell phones do we have? his reply? SIX! his recent math test had 11 problems. he got 10 wrong. this is the same stuff they have been doing in Kinder all year! he started the year with everyone else. it isnt like he started last week and doesnt get it. he has been in the class all year! 6 of his 7 months home! many of the problems on his test were in the vein of how many snowflakes. count them and circle the right number. he got them all wrong. his classroom teacher is saying HE NEEDS HELP! we are saying HE NEEDS HELP! but no one wants to help. they instead want to give us a line of bull to put us off. meanwhile its Andre who suffers.

sophie's new chair

I wasnt happy with the decision (that was made for us) to put her in an oversized stroller. She wasnt thrilled either judging by her reaction. When we put her in it we asked her about it and she was very noncommittal. smiling politely but saying its ok. not much more than that. After some soul searching I decided that I needed to pick myself up by the bootstraps and do what was best for her even if it meant stepping on someone's toes. So I cancelled the chair. I made an appointment to go to the dealer and look at some chairs there. I explained my concerns about the stroller he agreed. This is supposed to serve her for 5 years! that would mean she is 10 and in a stroller! she wont like being a baby. she wants so much to do things for herself. and to be honest I didnt really care for the looks of it. and I just all around didnt feel it was the best choice.

so yesterday we went to appointment with Reliable medical. and they had 2 actual wheelchairs for her to try. one was very special needs and probably more than she needs. head rest 5 point harness. the other one was what is called a "little dipper"
http://www.colourswheelchair.com/products/flyers/lil_dipper_first_page_01.pdf
I put her in it to try it out and she said Mama I LOVE this chair! it was just about her size and her feet fit on the footplate. she was so cute and excited. Then I knew I made the right decision. so we are getting a chair. a manual wheelchair in her size. I went ahead and customised it for her. Twinkerbelle fabric on the back and black sparkly for the metal part. she chose those. so its on order and will hopefully be here for us in 4-6 weeks. Probably just about the time she goes to Philly for her surgery = ( but I am hoping we can get some use of out of it before then. if not, definitely after casts come off. there is some question about fixators. will they do them or not? I dont know. I thought it was a given but now apparently it isnt. so I hope she will enjoy her new chair!

The best part about the chair was that she was actually able to power it herself! I dont think she will be doing long distances by herself but she had fun moving it around. if only that one hand were turned. then she could use both hands and go where she wants.

busy busy busy!

life is busy. 9 kids have school 5 days a week. 1 kid has school 2 afternoons a week. sophie has therapy 2x a week Ben has therapy at a different 2x a week. add in dentist appointments, piano lessons, house hunting, dishes,grocery shopping, lunch making, sick kids(there is always one it seems), trips to Philly, the neverending mountain of laundry, cooking cooking cooking(because they always seem to be eating eating eating!!!)reading with the kids, getting them all to bed.....all this adds up to....BUSY! I am happy but busy. very very busy.

For Valentines day Eric brought me a dozen red roses. they are very beautiful. I coudlnt find a vase but I sent Jaeger to the basement to look for one. He came back with a BIG canning jar. It worked though! They are really pretty flowers. The girls were all giddy that Daddy brought me flowers. but suddenly their tune changed and they wanted to know why he didnt bring THEM flowers! that made me laugh. Natasha says he was supposed to bring chocolates too and when she grows up SHE will bring me chocolates. Thats my girl!!!

Yesterday was Eric's birthday. In the chaos and rush of having PT and dentist in the same day(each in different cities, and neither in the city we live in) we didnt get to do our yearly crazy surprise. But he chose dinner and cake. I always let the birthday person choose whats for dinner that day(plan ahead!) and what kind of cake they want. so he had his fish dinner and lemon cake and he was happy. the kids all made him cards and snowflakes. The kids get so excited about birthdays. We called my dad as it was his birthday too but he was out to dinner with my brother. We all sang happy birthday on his answering machine. Hope he liked that. the kids sure liked doing it.

Househunting is discouraging. the one house I really really liked is too far away and only has 3 bedrooms. thankfully our realtor is OUTSTANDING in her field and is a really nice person as well. We got our 15 passenger van stuck in a driveway and she helped us get it out. she was a good sport and lay right down on the ground to hook up the tow strap. she had ideas and found shovel and gravel/sand. she thought of everything. but as much fun as we have house hunting with her we have yet to find "it." you know, THE house. "the one" we want to live in forever. When we moved here we liked this house but werent in love by any means. there just were very few choices! Now it seems we are in the same position! but Eric is still pining to build. but we have yet to find a decent property in a good location for a decent price. the market is not "breaking open" yet so we still have no idea where we will be next year.

I am currently in hot pursuit of an evaluation for Andre. the school is fighting tooth and nail. I have acquired an attorney from a group who defends against just such injustice. The school is telling me the child has to be here 3 years before he can be evaluated. that is a load of bull. he needs help in the classroom! his teacher says it! I say it! they poopooh me. GRRRR. I wont roll over and play dead though. I am his mom and this is the first of many times I will have to go to the mat for him. I will do it. he is such a little love. I adore him so much.

so all this busy busy busy is why I dont have a lot of time left to write here! The kids are all great. doing well in school(with the exception of Andre who needs HELP! and Ben who is a bit of a slow learner but is doing more than we expected!) they are all very loving and turning into typical american kids.

just keep swimming

I am floundering in the issue of a chair for Sophie. We had a meeting with a guy who presented us with exactly 2 options, the only diff between the two is 5 degrees in the recline. Now is a good time to do this. we have met our deductible. we are moving and will have NEW insurance company so we can look to them for power chair but I want a manual for now and to use later for backup. Also power chairs are difficult to transport and sometimes it would be nice to have the option of NOT having to bring the power chair. My other thoughts are that she is 5 going on 20 and is she going to want to be in a stroller much longer? the guy told us these usually are intended to be in use about 5 years. which would make her 10, and still in a stroller. she is NOT mentally challenged. she will KNOW that she is different and will KNOW when the other kids are teasing that she is a baby in a stroller. All in all I am disappointed we werent presented more options and am not sure that we are making the right decision on this. I called and put it on hold. Need to do a bit more research on this. why even ask the insurance company to pay 1000 bucks for a chair if we will hate it in a year or two. and I just cant understand why we werent even shown more options. sometimes small town sucks. I suppose the guy couldnt possibly carry all the options in his truck to bring to this small town appointment. so he chose what he thought was appropriate. but why does HE get to choose for us and for Sophie? If in the end this is the best choice ok. but I am not convinced it is. and I dont want a chair we wont be happy with.

Sophie is getting very strong. she works so hard in PT. Loretta her PT has said the same thing, she is getting very strong. even in just the few visits we have had she has improved a lot. today in her AFOs and shoes she was attempting to stand at the chair. she could get one foot up. couldnt quite get that second one up. but just the fact that she could get up on the one foot to PARTIALLY get her other foot up is pretty huge for her. She is making great strides.

Ben starts PT on Friday at 330. He is not progressing from casts as fast as we would have thought. he walked more in his casts than he does now with shoes and AFOs. he is singing right now to the dogs. seems to be working to quiet them! smart kid! why didnt someone just tell me all I have to do to shut the dogs up is sing to them?