Hope you all are having a nice holiday season. Dave has been home since Christmas and will be until New Years so we have all been together, just the three of us, for a week and it's been heaven. Dave is so great with Ellie and together we get so much done for her. So much to tell you all, especially about Bean and Ooee but that's for the next post with pictures.
It's a great blog written by a teacher of multiply disabled kids.
Lastly, we are looking for a recessed key, key board or key board adapter for Ellie. One that would allow her to use one of our computers. We need some sort of grid that goes over the keys so that Ellie can poke her thumb down into them so that she can isolate different keys. We would like to be able to hook it out to one of our lap tops so she can use them better. Right now she has a huge amount of trouble isolating the keys.
If anyone knows of anything like that, please let me know. Thanks!
Ellie has been really tired the last two days. She has been fighting a cold and it has been freezing here in New England. Low pressure days and snow and ice hugging the walls of the house. The wood stove keeps it all at bay but the cold creeps into the corners ready to pounce and the low pressure is keeping our energy low.
Winter Solstice. Shortest day of the year and the sun god seems to be fighting the moon goddess by being glorious and glaring off the snow making the most of his truncated day.
I am tired. Tired after a fight. Things are somewhat resolved with Ellie's school. I will go in after the new year and sit in for the week and make sure it's a good new plan. I will never again trust the trusted so well as to leave Ellie in a new situation without sitting in and checking once, and twice and again and so on. Two new classrooms instead of one. One new teacher and one old to share the split level needs of my aware, eager to learn child who happens to be quadriplegic and whose spine is always in danger of contortion. Positioning is important.
But she's tired my little one. She's growing. She's off her Cisipride. We ran out, the manufacturer took it's time and then when we got it 2 days ago we asked ourselves if we should put her back on. Ellie's GI doc told me of a new study about it that showed Cisipride is linked (in rare cases of course) to increased seizures. Great. What if it was the Cisipride that brought on the seizures in the first place? What if she goes off it and the seizures go away? What if we can get her off the seizure med that saps her energy? What if?
Ellie does have a cold and cough. What to do? Put her back on it and see if the cough goes away? Keep her off it and trust her cold is the cause of her cough, the same cough we all have. She hasn't had a temp so no aspiration -right? Her nurse listened to her lungs today and confirmed her cough is all in her throat. These are the type of considerations I face - every day. Her life is precious to me. My experience dealing with the medical issues she has is always a weighing of short term gains against long term consequences. My experience as a mother is all highs and lows and fear and wonder and sadness about what is not and thankfulness and joy about what is. Ease seems to be the missing part of the potion, testing my ability to be happy and carry on. I wonder if the moon goddess knows anything of that and is trying to provide a time to rest and reflect with her constant night?
Since Ellie left the preschool at her school and "moved up" things have been off, slipping. I am disappointed. All this talk about moving her up to work with kids that are closer to where she is at cognitively was not realistic nor has it come to pass in the ways promised. The programming in the classroom is so much less which equates to a lot of down time for Ellie. There are just less activities, less variety, less attention for all of them. And her physical needs, which are substantial, are NOT being met. The teacher and the two aids in the classroom are great people and all love Ellie, there's just not enough happening. All the stuff Ellie was doing has not progressed forward in any way except in Oral Motor where things are rockin. But classroom time has too much down time. Ellie is a nerd - she needs more academics, more activities, more learning.
Why? Why? Why? Why couldn't she have stayed in her old classroom for another year? I know she just turned 6 in November, but technically she would not be 6 until February 2009 had she not been born 3 months early. Why? What did we do wrong? What didn't we do right? I am upset.
Yesterday Dave came home and told me that Ellie was in a stander with the tray in a vertical position so close to her face that she could barely turn her head. I was livid.
What is up with that? How dare anyone do that to Ellie?! If they were trying to get her to look up the better way would have been to use a book or sing a song or get her attention another way. It's dangerous. What if she sneezes and smashes her head against the tray and tweaks her spine? What if her muscles get tight and that tweaks her spine? Some times in the new setting I feel like she is being treated like she has less going on in her brain than she does. There is an old school quality to it like stories I have heard of things happening to the disabled when they were labeled less pleasant things. It doesn't feel good that Ellie being in a position like that is ok to all those looking on and who put her in it. It doesn't feel safe.
I feel guilty. I was working, teaching, trying to be a consultant again and Ellie has been bored and in pain from no one regularly checking and giving her a break from her afo's. We did have a team meeting to address these things in October. But it some of the issues I have now are the same ones. That is frustrating.
Ellie has taken to folding over forward when she is in her chair. She NEVER does this at home. It's a bad sign. They think she does it because she is cold. She NEVER does that when we are outside with her in her chair when she is with us. I think she is bending forward because she is either try to get someone to notice to take her AFO's off and / or there is nothing to see -she's BORED. She is also sleepy all the time at school, but the minute she gets in the car and we start doing her songs and video she perks right up. Ellie's modus operandi from day one when she is bored has always been to check out via sleep. She is doing that at school. Lately too in the mornings she doesn't want to leave my lap, Dave has to literally tear her away. She used to love school.
I will take it over the last couple that have lasted for nearly an hour and only came under control after multiple doses of anticonvulsants.
30 seconds. Her lip was twitching and she was staring out into space, non responsive, and then she slept for 30 minutes.
Sigh. She has been fighting a cold. She did not have a fever. She has gained about 3 pounds and a few inches in height. We also started doing cranial sacral therapy again which has helped her tremendously in the past and is sure to get the CSF flowing and bathing her brain optimally.
I went down to the school after I heard. She seemed tired but fine. When it was time to go to computer class she nearly jumped out of my arms, all four limbs in full extension she was so excited. That's a good sign. She was able to show her teachers how she is able to add and subtract. She wanted to sign all the letters to that wonderful song "A, You're Adorable" on the ride home -which is what we do every ride home.
She was gone for 30 seconds and back again. I'm glad it was a short trip this time but sad she had to go at all. I am perplexed. I am not wanting to go and have a level drawn because she just had blood taken 10 days ago and because she hates that and because I hate her being on seizure meds. She's just not as bright on them as off. And it was 30 seconds. If all her seizures were like that I wouldn't medicate her at all and there is an argument out there that her seizures might have become more intense because I medicated her in the first place. Her initial seizures lasted 30 seconds followed by 30-40 minute post-ictal naps. The problem was she was having a few in a row around naps and upon waking, your typical between a rock and a hard place situation.
I am on a cleaning binge now. I clean when I am upset. It's a little more productive than losing it or crying. I save the crying part for quiet moments when I'm alone. I do some of my best thinking while tidying. What to do? Never a dull moment.
Picture Description: Ellie wearing the BEAUTIFUl sweater that Maureen knitted for her on her 5th birthday. It fits perfectly now and is oh so warm. Thanks again Maureen!
Ellie has a cold and a runny nose but even with that is sleeping pretty well. Of course now that I write this the mokas are going to come all the way from Jacqui's house in Australia to mine to mess that up. And maybe I don't mind so much. She was up last night, but for the past month she has been sleeping through most nights.
That's pretty good right, after 6 years of interrupted sleep?
It freaks me out when she sleeps so well. I wake up in a cold sweat thinking she has died. I go in her room and in my head see her cold and blue as my heart goes tachycardic. It's not a conscious thing. I want her to sleep - god do I ever want her to sleep through the night every night for the rest of her life and mine with all my tired sleep deprived heart. The sleep of children is precious, warm and peaceful as their brain develops and their bodies grow and they dream their dreams. And Ellie has taken a stretch over the last month - a couple of centimeters that make a difference in how her clothes fit. And she is cognitively coming along great due to all this sleep.
But, when it comes to sleep, I can't help but remember other kids I have read about that didn't wake after a nap or a night and my nervous system can't forget the first two years of Ellie's life where she slept beside us in her Arms Reach. When, if I heard her breathing catch, she was choking on secretions, or her body was so relaxed in sleep her tongue would slide back and block her airway and then later after she turned four, seizure. Always around sleep all the badness, and scariness of death, reaching out to snatch her away from us, me and Dave swatting it back with a small blue bulb suction or diastat and 911 or repositioning and a gentle pound on the back to stop the choking and help her produce a cough. Constant visits to the ER. Fear of her dying.
Maybe that's why it's hard to trust this sleep through the night. I don't trust it. It scares the crap out of me. I thought about putting her back in the room with us, but she is such a light sleeper and we are tossers and turners and snorers who will wake her up. Which is why she has been in her own room, own bed for a few years now, tyranny of the monitor and all it's sounds or no.
Still, there are many times when I hear her stuffy nosed breathing and go in and make sure. Or the nights when I don't hear anything on the monitor, nights when she is not stuffed up her breathing is so still it's hard to see her chest rise and fall. I gently put my hand on hers, fearing hers will be cold, and of course it's not, it's warm, the way kids are little furnaces when they sleep. Then I just wait till I am able to hear her catch a breath feeling self conscious that is she wakes and catches me listening so close it will disturb her. Once I do hear her breathing I go back to bed with this heavy feeling of guilt like I should just sit in the chair by her bed for the night, just in case.