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.
I can't believe that much time has gone by since that rainy, scary Saturday when she was born in 2002. She has come so far and I have learned so much about love. My heart always get choked up on her birthday because images of her birth and that day are still so very vivid in my mind. Like flashbacks they were popping up throughout the day as I watched my daughter, my beautiful Ellie as she is today I couldn't help but see the tiny blue body lifted out of me 3 months too soon. Dave pacing outside the door of my recovery room tears streaming, and frantic as I massaged my legs trying to get the feeling to come back into them quicker so I could go see her as he raved outside the door into the abyss as our lives changed forever. Not feeling the pain of the emergency C-section and the adrenalin to get to my baby.
And that first moment seeing her in the incubator with 3 wires coming out of her belly button, breathing tube down, IV's in each leg, raw fragile skin, baby white hair on her perfect round head. The on the spot breakdown, feeling that I had failed her horribly. Pain. She was in pain. I could feel it. My poor baby thrown into the world too soon, too fast without air. I don't think I will ever really get over that. I think that's just the way it is. It servers as a dark contrast to all the good that has gone after. A reminder to appreciate everything and anything that is good in the moment and know that everything she accomplishes is against the odds and a blessing.
We choose to celebrate her birthday each year with gusto. Celebrate her life and the fact that she is still here with us. We like to have a party for all her friends, teachers, therapists, nurses and care givers, family, and other parents from whom we have learned so much, to say thank you. Without all of these wonderful people we would be lost.
Ellie, who started with so many challenges has achieved so much and there is no stopping her. She reads, she dances, she sings, she signs, she laughs and tickles, and does subtraction and addition, and loves and loves some more. I am so lucky to have her in my life as she brings me so much joy. This birthday I was really struck by how many people love Ellie and us and who are in our lives supporting us and taking us along. We have our village and it's a great one. We are truly blessed and grateful.
Too all of you who called and could not be there yesterday, we missed you and love you and had the vanilla cake with the vanilla icing, and it wasn't the same without you. ;-) Scroll down and see the montage for more pictures of the day.
Special thank you to Carla, the lovely lady by the key board in the picture above, who volunteers every day at Ellie's school to conduct music classes for the children. Thank you for coming to Ellie's birthday party and playing all her favorite songs. Ellie LOVES music more than anything in the world and your being there to play the songs that she knows and loves made a huge difference. Seeing all her classmates and their siblings dancing and rocking out together was pure joy and could not have happened without you. Thank you doesn't even cover it!
Thank you too to Bonnie whose help in the morning and during the party allowed us to keep our sanity and get all ready and for doing Ellie's hair. The french braids were perfect with the flower crown. Ellie looked lovely. Thanks for all your help and love you give Ellie on a regular basis (and for "hiding guy" and new and improved Bear Hunt both of which she won't put down!)
Thank you as well to Liz and Marla for all the balloons and signing and "water bottle smiley" and keeping more than one child from near immanent self destruction with all our open shelving as well as all the love you give Ellie regularly. I still can't believe you found a new "raggedy" which is a feat beyond OTT and Ellie has not put her down since. Between Raggedy, "hiding guy" and new and improved Bear Hunt (the last two thanks to Bonnie) we had trouble getting Ellie to stop playing and go to sleep last night!
Thanks to everyone who attended and for all the gifts for Ellie. It was great to share with you this happy day.
I am away again in the great state of Wisconsin. It's very dry here as the bad lands are not far away and all moisture gets sucked into them like a big burning dry vortex. I will be here all week. I was worried about how to vote. I called my town hall and they said come on down, but of course, not in as friendly a tone. Did I mention I live in Eastern Massachusetts where people are all business all the time? They don't feel the need for friendliness and niceness is something that was lost on the Mayflower. Maybe they are still feeling the repressive effects of the Puritans?
It took me all of 12 minutes to vote (see all that time saved by foregoing all the niceties). 12 minutes. In and out. I had to draw a line between two boxes with a special felt tipped pen. There were five other people voting at the same time and a steady stream of people coming and going for the same purpose. The atmosphere was brisk and efficient - a thing I do love about doing business in New England. There is none of the languid carelessness found in LA.
I handed my ballot to the poker faced lady at the counter and said, "No hanging chads with that!"
She brightened and said, "No they've made it a lot easier this year."
"Thanks!" I said leaving. It never fails to make a person feel good by noticing their work.
I think I just may have to vote early every election. No waiting, no lines, no stress - just exercising my constitutional privilege.
Go exercise yours! It's important.
If you suspect that things are not as they seem and your vote is in jeopardy - report the town clerk who may be violating the constitution and all that our nation was built on. CNN has a hotline you can find on their site.
I want my candidate to win but even more than that I want everyones' vote to be counted. I want our system to not be as broken as it is.
I am leaving today for Minneapolis and will be gone until Sunday. I will be doing some work for a client as well as meeting some old friends. In the planning stage I was excited to go. But now, as I wait for the cab to take me to the airport I am sad. I always feel this way when it comes to travelling alone. At first excited for the adventure and then upon the point of departure, really sad. They are very hard to leave, Ellie and Dave.
I tried to tell Ellie about it this morning but it just didn't compute. Time is a weird thing to communicate about in general then try to do it with a 5 year old. She didn't want to leave me when Dave came to take her to the car and I feel really, really bad that when she get's home I won't be there. When she wants to snuggle in to go asleep on my lap like she does most nights, I won't be there. I am worried about Dave too. What if she is up every night like she has been for the last week? What if he is so tired he falls as he is carrying her down the stairs in the morning? What if she gets sick? She was a little not herself yesterday, and here I am leaving.
I guess it's a good problem to have, two people that it tears your heart out to leave. There's my cab. Can I not go? Just say never mind? Nope. Sigh.
*picture is of Ellie sitting independently on the couch playing with her farm toy in her jammies.
I was having lunch with a colleague of mine. We started talking about our kids. I mentioned that Ellie was doing really well in school and that we were really happy about it because she has come so far. They agreed and nodded and then said, "You're a saint."
I said, "No, NO! Definitely not. Ellie's a great kid, probably a lot easier to deal with than a lot of kids."
But ya know, I wish I had said something more to the point like,
"Do you really think you have to be a saint to love your own child if they happen to be disabled?"
And then, in an ideal world, I would have quietly waited for their answer. I am sorry I didn't have it together to say that instead of babbling like I did.
Because isn't that what that comment means? You're a saint because only a saint could love someone who is imperfect or drools or is just basically in that other category most people don't like to think about. Like you have to be Mother Theresa or something (no offense to Mother T.) but jeez!
I remember one of the other mom bloggers writing about that. But this is the first time it was ever said to me. It just seemed so out of context. One minute we were talking about our kids, the next I was defending my child's loveableness.
So for the record - it doesn't take a saint to love Ellie. Not even close.
There is a little girl who moved in a couple of houses down from us several months ago. Her name is B. She looks to be around 6 ish. She is shy and just stares at me whenever I say hello to her.
She loves Ellie.
Two days ago, Ellie was out for a walk. Whenever Ellie goes out, if the neighborhood kids are around they always come up to her. And when I say that I mean they come up really close to her and say hi and want to push or explore her Kid cart/wheelchair. They are alway so enthusiastic to see Ellie. I know they wonder where she is when she is not out and about. I think sometimes they worry about her but like kids do in that totally pure, nonjudgemental, your life is hard kind of way, but more so in relation to her place with them, whatever that is.
Ellie used to not really pay too much attention. But lately she stops doing whatever she was doing like reading signs or playing with her Raggedy Ann doll who always likes to go for walks too and she will look at the kids and sign hi. She is rivetted by them. This is such a nice indicator that she is maturing.
Two days ago B. asked Ellie what she would be for Halloween. Ellie didn't answer. Undeterred by this B. suggested that Ellie be a fairy princess. Then B's eyes lit up and she exclaimed, "No! You should be a Rainbow Fairy Princess because you are more beautiful than just a fairy princess!"
We had to start Ellie up on the Cisipride last night. And ya know, I am sad about that. The doctors said she had to discontinue it on the 5th for the surgery on the 8th. We did and found her to be none the worse. But Thursday she was a little gaggy and up all night, not vomiting, but refluxing and in pain. Last night and Friday, more of the same. Such a bummer. I was really hoping to get her off the Cisipride.
So in truth, it's the meds AND the food combining no sugar, low acid diet AND the Slippery Elm that are keeping her esophagus safe and healthy. Which also tells me that her reflux is THAT bad that she needs all of that still. The small bubble of hope exists in the fact that we have not upped her medication dosages on the Cisipride, Protonix, or Zantac in over one year. Will she grow out of needing them some day? That' s a question that can only be answered by looking at her brain damage and believing and brain plasticity and hoping that some of the alternative therapies we do with her help heal her brain. Hoping too that stem cell research will continue and find a cure for brain damage that is with out the risk it is today.
Signing off, from Earth, feet on the ground, trying to see it how it really is.
Can you tell who I have been spending a lot of time with? Ellie loves it when she plays that song on her Wiggles guitar and we go along.
Ellie has been home today because of her surgery yesterday. Who ever said there are no side effects to ear tubes got that dead wrong. Just like ALL other child medicine decisions there are crappy trade offs. CRAPPY. We had ear tubes placed when Ellie was 18 months due to chronic ear infections. I think her mild hearing loss is due to those infections. So we had to do it. I do believe we made the right choice.
Fast forward to 4 years plus later - (sorry not in the mood to do the math) and we get to learn about yet another medical condition - Cholesteatoma. Where the pocket left by the long since fallen out ear tube has become an area of negative pressure and is creating a keratin build up in her ear (basically dead tissue) which becomes a tumor of sorts that will eventually grow to a size that can destroy those three lovely little delicate ear bones that allow us to hear. Great.
Hence yesterday's surgery to remove the Cholesteatoma which is a very involved thing because they have to remove the keratin build up -which is simple - but then cut a little bit of cartilage from her ear and put it where the negative pressure pocket is - like a little wall that will stay straight versus concave and keep dead cells from building up again - roughly a 2-3 hour surgery.
Her G.I. doctor, whom I adore for the record, jumped in on this and scheduled an endoscopy too. He has wanted to do this for some time, but I have been holding it off because you have to go under general anesthesia to do it, and general anesthesia, as well as elective surgeries are two things we scrupulously avoid.
Yesterday was the day. We went in at 10 and Ellie was prepped with us. She was starting to get upset by 11am because she was hungry and because she understands almost everything that a normal 5 year old would and she knew something was coming. I was very pleased when the anesthesiologist asked if he could give her some Versed through her g-tube to help her relax and not be traumatized by the mask they would put over her face to put her out. With in 10 minutes of getting the Versed, Ellie was smiling and would allow us to put her on the bed and she had a lovely stretch. Cute in a weird, this is wrong, kinda way seeing your 5 year old on drugs. But she's a happy drunk. I was glad that she was relaxed going into the operating room. I walked her to the door of it, as far as they would let me go. Ellie was sleepy at this point, and I kissed her and they wheeled her in. After the door closed behind her I burst into tears. I felt out of practice. Things have been going so well. I still, like any parent, HATE seeing my kid being wheeled on a gurney to the operating room. It's an awful, horrible pain in the heart.
I went back to Dave who was gathering up all our stuff (Ellie's stroller, toys, clothes, etc.) and I was still crying but trying to hold it in. It wasn't like I was wailing or anything, just looking hard at the floor and I could feel the blood in my face and the tears were streaming. A really nice nurse closed the curtains and I took a minute to get it together.
We went to the waiting area and - waited. That wait. It's a particular kind of waiting I will never, ever miss if I never have to do it again. Every time the nurse would come out all the other parents would look up hopeful and fearful at the same time for news.
Then, abruptly, 45 minutes in, Ellie's ENT surgeon came out. Dr. Trevor McGill. He's from Ireland and has a Dublin accent. He's older, gray haired but spry and energetic. He looks 10 years younger in his scrubs and cartoon character surgical cap than he does in his street garb, which frankly is rather Irish priest-like gear. But he comes out with a picture of Ellie's inner ear. They had removed the Keratin to find that the pocket of negative pressure left from the initial ear tubes was not as concave / deep as they feared. His proposal was, instead of doing the full on Cholesteatoma, which is a 6-8 week recovery time, they would instead place a new ear tube next to the pocket which would even out the pressure and basically buy Ellie some growing time. The theory being that adults don't get Cholesteatomas...
After a short discussion, because we were very conscious that while we were discussing, Ellie was unconscious on the table, we signed the consent form to do this. However, writing this now I almost wish we had said no. No to both the Cholesteatoma surgery and the new tube placement. No because if the Cholesteatoma has not gotten any worse - maybe it never would have gotten worse. No because what if when the new tube falls out the same damn thing happens? No because - it just sucks to have to make these crappy, invasive, put silicon tubes in my daughter's head choices....
I hope we did the right thing. I really do. But that's the thing about being a parent in this situation, I at least, am not 100 percent sure, 100 percent of the time that the choices I have made are the absolute best that I could have for Ellie. And that is with trying my hardest and doing my homework. It's just the awful nature of it.
The good news is that her recovery time is much less and the whole tumor growing in her ear is gone.
About 45 minutes later the G.I. surgeon came out to give us the news of Ellie's endoscopy. An endoscopy in this case is when they put a scope (small camera) down Ellie's esophagus into her stomach and into the first part of her intestines to take a look as well as some tissue samples. The really good news here is that Dr. Fox, head of GI at Children's Hospital Boston, said that he didn't see any irritation. That her whole tract as far has he could see looked great. Better than most peoples'. To all the doctors who have scoffed at her diet and even to my GI doc whom I really like but has still been so worried that Ellie's esophagus was rotting away because we never got her the Nissen Fundoplication - I really do have to take a entirely, smug, poor form human moment and shout HA!
I also, when I get off my scales of justice have to think it is the Slippery Elm - that no one seems to understand but the herbal folks and health food store junkies. Slippery Elm has to have been the thing that has helped Ellie's digestive track heal and be healthy. That and her no sugar, low acid, food combining diet. It's all working - really well. So HA HA HA!
OK - yep rather a few human moments there.
The great thing was too that instead of having to stay over night on serious pain meds Ellie got to go home with us. Today she wanted to watch videos and snuggle and was tired but kept all her food down and wanted to play. We have been controlling the pain with Tylenol and she has been a pretty happy, if not tired, little cutie pie.
I am almost done grading papers etc. and I need to post pictures of Ellie belly. She is now 36 pounds! 36. I can't believe it. She is growing and there is so much of her to hug these days. And when she is not having to deal with surgeries she is doing great. We have come a long, long way and I am thankful. There's nothing like seeing your kid wheeled into the operating room to make you feel 1,000 times more grateful for their existence in your life than you were before - even if it's hard to believe that is possible.
Hi Everyone. Life has been crazy for me this month due to the course I am teaching. It's been a great experience teaching but a huge time commitment.
Ellie is doing well in her new classroom this year. They are definitely feeding her brain. We are a little concerned with her positioning needs and it feels a little bit like we have traded some things for others. That's not a good feeling. I sometimes think I am the only one who remembers that she is really just 5. Though she will be 6 in November she should have been turning 6 in February. I am worried about her emotional needs. Because though she is wowing everyone with her spelling and reading and finger spelling and computer work at school, I am asking myself, questions like:
When I was 5 in kindergarten we did crafts and music and colored and had naps. It was all play based learning. And then in first grade it was table work, group work on academics. But when I did it I was 6. Not 5. So is this ok to have put her in that environment and ask her to give up so many things she loved about being in preschool? Instead of swimming twice a week she does it once. Instead of getting to roll on the jumpoline (this huge blow up trampoline) she goes on field trips - meaning more sitting and more sitting versus stretching out.
It just seemed like the pre-school was more fun for her. I do know that there were times when the rest of the class would be doing some play type learning activity and Ellie would pick to read a book. She did get the reputation there as being a bit of a nerd. So there is evidence that she needed a more academic approach. But I'm worried.
I want her to be happy. I want to protect her spine from curving which is why Dave and I are both worried about making sure she is allowed to stretch out - throughout the day - not just in the afternoon and not just once. I am worried that her AFO's are not being checked enough and she will get another pressure sore. I am worried that some of the basic goals like working on potty training have fallen off the radar.
What really sucks is the guilt I feel because I am away from her. And I won't be able to sit in with her at school until next week. That is three weeks of just dropping her at the door and letting her fend for herself in a new situation that I am finding it very hard to get any insight into. It's like pulling teeth to get information from the new crew in the new class. I am sure my lack of comfort with the new situation is due to the imbalance of information I have about her day compared to the huge number of questions I have.
I guess I am learning what I am teaching my class and what I talk to my clients about all the time - people will support change that they help to create. I see how this works in reverse. We were told that Ellie would be moving up. It definitely was not our idea. It didn't feel like we had any say. We could have fought it but any parent knows how stressful fighting their kid's school is. And we trust her new school. They have been so good for her and good to us. That is also part of the reason we were caught off guard with by having concerns about a situation that seemed flawless for the past year and a half.
So maybe I am just resisting the change because I can no longer imagine every bit of Ellie's day and feel that she is safe? I have lost that competency for now and have to make new relationships with the new crew - which seems really difficult when I am working so much and their personalities are so different from the old crew who were markedly outgoing and information giving.
The good news is, I think Ellie is managing well. She has not been exhibiting any of the behaviors she does when things are really bad. She doesn't wake up screaming. She is not extra clingy. She did cry the first week each day at points. I assume out of frustration in the process of having to get to know new people and being exposed to new things. And fair play to the new team for letting us know. I assume she has not cried since. I think too I am extra protective of her because of her rough start in life. I think she has suffered enough and I want her days, every day to be good - really good. I know that is not realistic but I will certainly try to realize that goal for her as long as I am breathing.
On the up side she has taken to working on the school's computers - which she would not touch last year (though she would touch our laptops at home the big ones at school made her upset) and that is huge progress. She seems really attached to the new teacher and teacher's aids. She seems happy. And she is tired at the end of her day - which I hope is a good kind of tired - the kind of tired you get when you have been engaged in interesting activities and fun. But I just am not 100% sure - and that bugs me!
Still trying to find the balance and looking for the new comfort zone in all this change.
I screwed up. I didn't take a picture of her on her first day in her new grade/class/etc. She was so cute too in her new stretchy/comfy jeans and pink Lucky Peace and Love t-shirt and pig tails. I cut her hair just a bit - it was down to her bum. I asked her if she liked her long hair and she said no (alright, I asked her about 5 times to be sure and each time no, no, no). So I cut 4 inches off. He hair is now down to her shoulder blades and allot lighter on her head such that her cutie-pie pigtails are back.
By the end of her first day she was making the Peace sign to all who would see (using her right hand to hold up her two fingers on her left) - yes that is way too heartbreaking cute. I am sure someone there read her shirt and showed her how to make the peace sign which made the peace sign way too cool to be ignored and there you have it.
Overall she is doing great with the transition. It's been a slower start than we expected. And the first day Ellie communicated via picture symbols that overall she was bored. And there have been a few bumps like the fact that her new classroom is about the size of my closet (which is way too small for a kid that needs to be on the floor to stretch out and roll, etc.) and not very wheelchair accessible. But in true "new school" style they are fixing it by this Friday with parental help. Yes, new school still rocks, still listens to us, and still cares about our Little Miss.
Today Ellie's new teacher surprised me. She showed me a sheet of images and words that Ellie had created by herself on the computer. She said, "Ellie worked on the computer today." And I replied, "Oh, did she actually touch the computer?" Teacher looked at me like I was daft and said, "Yes! She loved it, she did this!" Showing me the sheet again.
I was happily amazed. Ellie loves my computer and Dave's. We have the missing keys to prove it. But last year when various people attempted to get her to work on "their" computers, school computers she acted like touching them was the scariest thing you could ever ask a person to do. There was, let's just say, a great deal of resistance to that idea.
So get over me why don't you. Once again warrior princess make a giant leap forward without telling me! That is such a good problem to have (not really a problem even if I appear idiotic to people who only know the latest version of Ellie and don't remember all the other versions because they weren't there).
We are on Ellie 007 I think! She is like a bond girl these days. This morning before school she insisted on going in her Pony. She immediately went over to the chair with Dave's (turned off lap top) and wanted to open it. Right, because if she's in the Pony her videos should be playing on the lap top in that room and on the TV in the other. It's a party to be in the Pony after all and the right atmosphere is necessary. She is very inspired to take big steps for kisses and hugs when she reaches me. That is the cutest thing ever, other than the other cutest thing ever I just told you about.
I am impressed by how she is taking consecutive steps. She really understands the whole one foot in front of the other thing. She is such a hard worker and so determined. It seems like with all this activity and all these new brain waves, as they say in Ireland for epiphanies, she is having that we finally have the med balance right. One that allows her brain to relax so she can sleep which she has for two nights in a row (yes calling the Mockas...) and having enough energy during the day to rock out in her Pony and impress everyone with her vocabulary.
I can't promise any pics for the next 3 days. Tomorrow I teach my first live graduate school class and again on Saturday and Sunday and the rest of September is going to be a blur between the teaching all month and my consulting days. I love my work but I miss Ellie when work takes me a way from her either mentally, physically or both. I wish we were independently wealthy and all I had to do was take care of her. And I feel bad that she is in this big transition without me right there by her side as much as I was last year. I just miss her in general. It's been awhile since I have been flat out with this #$%^& course. What was I thinking? It's a love / hate thing for sure with my work. Sigh. Time for sleep.
This is a bit of a cheeky rant, because, well, frankly I am perplexed.
First of all, thank you to everyone for their good thoughts about Ellie and Dave. Like I have said in the past - they really do help. And Dave's finger is healing and Ellie seems to have pulled through the seizure intact. That's not the rant part.
Here goes - OK - how do I say this? First I wanted to do a quiz to ask people what they think it meant when I wrote that Dave could not lift Ellie? Because, surprisingly it's not obvious to all. I am sure parents of other quadriplegic children would be saying, "well dah!". But even people close to us don't seem to really understand the implications of one of us, Dave or I, being injured such that we can not pick up our 34 pound quad cp, seizure prone, dysphasic, refluxy, lovely, active, curious, loving, g-tube dependent child.
Why do I think it's not obvious to all? Well because of this suggestion I got from a friend after they chided me for taking on the teaching job (like I needed more chiding, come live in my brain for 2 seconds) about how to deal with all the stress:
"You should go away for a few days on your own to chill out."
I guess it's really hard to put yourself in someone else's shoes. I have always felt bad when I have been unable to do this well. And, of course, there are people living in situations that no matter how hard I try to imagine and empathize I will never truly understand what it's like for them. This must be an example of that. I never thought I was one of those people that is so hard to empathize with. Didn't realize that for some, our day to day normal was so beyond the pail. Maybe I should describe things better here on the blog? Maybe it doesn't matter? What do you think?
Yesterday morning Dave went very early to his hyperbaric oxygen treatment. Ellie had been up again at 3:47am until after 5am. She wanted to come down at 5 but I didn't let her because I was worried about how little sleep she was getting. I had fed her and changed her diaper and held her and tried to coax her back to sleep getting more and more frustrated. Finally she lay down and scooted her way close to me. And then alternatively had reached out to grab a fist full of my t-shirt and then push me away. I decided that maybe my presence was too distracting so I put the blanket on her and stood by her bed until she fell asleep. Around 8am I heard her peep. I was so tired I let her peep a few times. She does that - makes a sound and then you go in and she has turned over again on her side, thumb in mouth, asleep. But then I heard an odd gurgle and ran in there. She was seizing. She wouldn't look at me when I called. I tried a few times. Nothing. She wasn't in there. Her eyes deviated to the left. I turned her on her side and gave her the Diastat kit and called 911. I kept calling to her, telling her mama was here and that she was a brave girl and that it was all going to be ok. This was a weird seizure because she grabbed my finger and held on with her little fist. Her color was good but the gurgling did not stop. I was worried about her choking but her color stayed pink if not a bit pale.
The EMT's were there within 4 minutes. They must know me on the 911 call because I called and the woman on the line said something like what is the problem. I said, my daughter is having a seizure. She said, what's your address. I told her and she said, we're on our way. I hung up after the 15 seconds all that took and went back to Ellie. I have since put a phone right by her bed because running into my room to make that call was excruciating.
She seized for around 40 minutes. Luckily they didn't have to give her as many meds as they did last time - just a 2.5 more milligrams of Valium. Last time it was three doses of ativan and one of fosfentoyn or something like that. It's in the post I wrote about that over a year ago, under the seizures tab. For some reason I don't want to commit the gory details to long term memory.
We were home again by 5pm because after Ellie had slept off the Valium she perked up and it was good to be able to care for her at home.
I'm sad. She was so bright and had just gotten her energy back. Her depakote level was 68 which is in the therapeutic range but apparently not for Ellie. My hope that she would out grow the seizures any time soon is gone. Her dose is upped by 125 milligrams now so we will see how her energy level is after two weeks when she adjusts. If it is low I am going to talk to the neurologist about trying some other drug. God I HATE giving her all these drugs - but if I don't the consequences are just as bad. The neurologist thought her latest bout of no-sleep and sleep being off might be due to subliminal seizure like activity that had been going on.
I'm tired. I'm sorry. I feel like I am a bad mother. I feel like if I had gotten up with her at 5am like she had wanted versus trying to help her back to sleep maybe she would not have seized. I feel like my bad mood over Dave's finger and the stress of dealing with it all brought her seizure on. I feel bad that she has to be on a drug that deadens her brain activity at all. She's so brilliant and we got to see that more and more over the past couple of weeks. She seemed fine today if not tired. I worked hard to make sure she was hydrated and getting her meds at precisely the right time and not letting her nap too much in the day so that she can get on a regular sleep cycle. I have set my alarm for 6:30am so that even if she is up at 3:47am I will wake her early and get the sun on her face to try to reset her internal rhythms.
She was practicing her finger spelling today again. That made me happy. I always worry she will lose something after a seizure. Her latest words are Mama, Santa, Dada as well as signing the ASL numbers 1-5. She is working on the letter's B and I and R - the open hand ones are harder for her. She even went in her pony for about half the time she normally does but it's a start. She's such a little sweetie and she is growing fast. She has really taken a stretch over the last couple of months getting longer all the time. I wonder if her brain is changing too and more prone to these fire storms when she is in a growth spurt.
Not much more to say, am still feeling a bit numb.
Ellie is definitely not having the summer break I planned for her to have and I couldn't feel worse about it. We were going to go swimming every other day, work on eating, the whole house was going to get labeled in a word extravaganza to beat the band and on and on...
All of that has been out the window because of me being stupid and signing up to teach a graduate course in my capacity as an organizational psychologist not realizing how much work that would mean for the month of August when Ellie is out of school. And then of course there is the matter of Dave mutilating his left index finger. Such a bummer on so many levels.
The good news is, he had the reconstructive surgery on Tuesday and the doc was able to save most of his finger right down to most of the finger nail! Way more than he expected. I can only attribute that to Dave's generally strong constitution and the hyperbaric that he did every day in the between time when we were waiting for the finger to "declare itself". That word "declare" brings me right back to the NICU when we were waiting for Ellie to "declare" herself - translation - whether she would live or die and if she lived what sequalea would follow her injury. Other NICU parents may have heard that word too. I don't think I will ever get over that NICU experience when just one little word can take me back. (Did I mention this post was going to be a bit of a ramble...?) Luckily insurance will pay for most or part of the Hyperbaric oxygen treatments which tells me the actuary science behind all insurance is smarter than doctors in this matter. Of course the doctor did not believe it about the HBOT helping - but who cares. I know it helped. The bad news is he is in allot of pain still - percocet dreams for him now.
It's weird seeing him all loopy on the drug but way better than him being in pain. It's so funny after it kicks in I can tell all is right with the world. He'll comment on the beauty of small things he doesn't usually notice. He's such a gentle soul and a sweet person. It's really cute.
The bad news is that he won't be able to lift Ellie for a long time which means he can't look after her - he can't be left alone with her. So just when my career is getting into a higher gear, not sure which gear, but definitely more active than in a long time, he is taken out of the carer picture. It's bad in the sense that when I am working on site with clients I will have to leave sometimes at 6am. What are we going to do?! Sigh. My head is bowed in awe of all single parents, especially those of children with extraordinary needs. I am in the process of finding people to help us. Not easy finding folks with the ability to deal with a non verbal kid, cute as she is, with CP. Luckily it looks like there are some angels in my corner and I am interviewing a new person tomorrow. Timing really stinks or is really precise from a karmatic perspective - however you want to look for it. At the end of August seems to be when all the people who help us from time to time need a break.
So right now when I need to be putting my lectures together and firming up my syllabus, do I take advantage of the fact that Ellie finally went to bed before 10pm? No, of course not! I decide to procrastinate instead. I have all my notes and draft syllabi's in front of me. My computer is set to go with perfectly blank page waiting and ready to absorb the flotsam and jetsam from my mind. But alas, I am writing this post instead -- which is a true sign of the pressure. Procrastination is my MO. All this writing should get me going - right?. Oh and did I mention Ellie has decided that between 2am and 5am is the best time frame to wake up screaming and wanting me and then once the reflux subsides she waits for Dada to come in too. Which of course he doesn't because he's dreaming on percocet.
It's karma for Dave taking care of me all last summer after my knee surgery. Maybe he needed a break? Maybe it was time for him to have an enforced rest? Either way, things are crazy. I don't think I am taking this as gracefully as I could. Always something to work on in my own development and unfoldment as a very flawed human being. Yup. And I just heard Ellie now on the monitor tossing and turning. GREAT. I can tell right now it's going to be another hard night where she decides she doesn't want to sleep at all. Is this all about being stretched, what doesn't kill you makes you grow stronger stuff? Or is what doesn't kill me just going to continuously kick my ass for the next little while?
Obviously this post is a rant. Just wanted to check in and let you know we are all still here in various states of consciousness slipping up and down the survival scale as if it were some sort of amusement park ride.
I truly hope the end of your summer is going way better than ours!
Sigh. Sometimes you just have to grin and bear it. On Saturday Dave severed the tip to the first joint of his left index finger. It was chaos, pain, a 911 call and more pain. Poor Dada! The next day after the hand surgeon told us there was not a "chance on this earth" of him keeping the tip, we took him to hyperbaric oxygen treatment in Randolph Mass. The Randolph folks opened up the center just for him, wonderful souls that they are. And he went really early on Monday morning. On Monday, the day of reckoning, the hand surgeon opened up the bandages and instead of the blackened necrotized tip of the finger there was healthy pink albeit mangled skin. It lives! Let the healing begin - which will take about 2 months or more in which time Dave can't lift Ellie.
Ellie, is cutting her "4 year molars" at age almost 6 - which makes sense since she was very late to get teeth at all. She is suffering the process and the chemistry is upset in her mouth such that she has a huge canker sore on the same side of her mouth on the cheek. It's so painful you can't even lightly brush the outside of her cheek with our her wincing and bursting out into howls of pain and then sobs. We have been trying to swab the area with Q-tips full of different concoctions from the doctors. But the swabbing alone is traumatizing her with her oral aversiveness. And she is driven absolutely crazy because she can't even comfort herself by chewing on her thumb.
As Dave's sister says, "Sleep is for the weak". And certainly not for me this week.
Anyone have experience with the molar thing yet? This one hit me by surprise. A year ago Ellie's dentist told us she had all her teeth. But maybe she doesn't think of molars as teeth - like the thumb is not a finger....whatever... help, yelp...any tips on remedies to speed up the healing of Ellie's canker sore will be much appreciated.
*Thanks to Rick for the title of this post, black humor and all. Also for the advice on the MSM for Dave which seems to have all been a part of the magic formula that is healing his finger!
Ellie never stops surprising me. This morning is one of those times where she just makes me so happy I tear up. She has had a few rough days. We are in food trials again and the lamb one is not going to well. More on that for another post. Needless to say, she has an upset stomach and has been feeling poorly. Last night Dave was in and out of her room to comfort her. (I got to sleep having done it the last time).
Recently Ellie had figured out how to make the letter S with her left hand. We were sitting on the couch and she was obsessed with one of the Maisy (Lucy Cousins) books and she put her thumb on the letter S and then made the sign for S. Of course I was thrilled and heaped on the praise and excitement.
The ASL letter S is a closed fist with your thumb crossing the other fingers. And she figured out how to do this on her own. So I realized when she showed me this last week that maybe she would be able to do the other closed hand letters - like A and then T, M, and N. So I showed her those. She was so interested she even let me help her make the hand positions. Since then she has been practicing making A, T, M, N and S and we added B too. The first time she tried to make the B (which is an open hand with the thumb crossing the palm) she could not get her hand open so she used her other hand to pull her fingers up. Does that just want to make you cry!? I did. She tries so hard and is so tenacious.
So add B to the finger spelled letters she can do. Every night when we sit on the couch she wants to show the brunette princess on her princess blanket these signs. I hold up the blanket so she can see the princess's face and she makes the signs and the princess is always really impressed. (This is our way of dong imaginary play - lots more to describe here about how we got there - but in another post).
Anyway - so it's been an amazing thing with her initiating all this finger spelling.
This morning after the rough night I hear Dave and Ellie on the monitor. Ellie wants to sit up and Dave puts her on his lap and Ellie starts finger spelling. I hear Dave vocalizing the letters she is making as she does it. I don't know why we do that - we just do - we lend her our voices to reiterate that we understand what she is doing, reading, now finger spelling. And I hear Dave say, "M - A - M - A. You spelled Mama!!! Mama is going to be so happy! You're my little genius!"
Yep, he called it right. Mama is very happy. When I picked her up this morning, she finger spelled M-A-M-A first thing. Sigh. I can always count on Ellie to burst my heart open in the space of seconds.
1. I accidentally tickled Ellie behind the knee when removing some adhesive from the latest and last (for now) round of casting. She laughed and then put her hand on my ribs and tickled me back with a big smile on her face. How did she learn that? Now one of her favorite things to do is tickle Mama and she does it just when I am most in need of a laugh.
2. Ellie especially likes the blanket on the couch. It's purple and cool to the touch as it's smooth cotton. She insists on having it over her when she falls asleep on us even if it's hot out!
3. Ellie's big hiccuppy belly laugh when the duck finishes baby van goat's painting.
Sarai asked me some interesting questions in her comment on my blog, "Understanding Lady Muck". They were such good questions I wanted to answer them with a whole post.
Here is what she asked:
"Your blog makes me think a lot about how difficult it would be to parent when you have a aware but non-verbal child, especially your first child, so you have no point of reference. How much I take for granted, not just the obvious things!!
I do wonder how Ellie's awareness but not able to verbalize influences everything. So she has "typical" (there's that word again) five year old feelings, but not typical ways of being able to express herself. How DOES she express her feelings? Do you have a word board for "happy" "surprised" "angry" "frustrated"? Do you just go by facial expressions, and suggest the name of the feelings for her? Does she use sign language to tell you? Sorry for questions and not suggestions."
These are well timed questions as I have been beefing up my communication skills because of all the work I have been getting. One of the resources I have been using is the Toastmasters International website.
One of the things they stress in their online literature is how important body language is in communication. In some communication theory, the heuristic is that there is the "message" which is the words you actually say. And then there is the meta message which conveys your true intent or tone and that is all done in the body language including the pitch and volume of your voice as well as your posture, facial features, direction the eyes are looking. There is a ton of research on this. Malcolm Gladwell talks about some very, very interesting aspects of this in his book Blink, which I highly recommend.
When I teach executives to be mindful of their meta messages as well as their words I tell them that the meta message accounts for 70% of what we communicate and the words a mere 30%. Anyone who is married knows this intrinsically. You don't even have to hear what your spouse is saying when their body language tells the tale perfectly.
OK - I am actually going to respond to Sarai's comment now that I have shared with you all the things Sarai's comment made me think of.
First I would like to tell you Sarai that you have hit the nail on the head with your remark about Ellie being our first child and having no point of reference. This is sometimes good and sometimes bad. The good is, I don't know any different. Sure I see the differences when I go to the pool and the other moms are chatting away while their 5 year-olds are running around like wild things. But at least that reality is not in my face every day. Ellie is our normal. The bad side is - I worry that, because I have not parented a typically developing child, I don't expect enough of Ellie. I may not push her hard enough. I may be missing things altogether. These thoughts scare me on a regular basis.
You ask how does Ellie express her feelings? That one made me laugh - if you could only meet Ellie (and keeping in mind what I wrote about the message and the meta message) you would have no doubt what she is feeling most of the time - at least on the big things. Ellie is actually really good at getting what she wants across. Her body language is really, really well developed. That said, with the subtler things it's a bit harder for others to read her and when she meets someone new she clams up and takes away all data that might be there when she is feeling safe.
My friend Rick always accuses me of reading Ellie's mind but the truth is I know her cues and she knows I know them. We communicate through a series of looks she gives me along with what would sound like little consonant-less words that have very clear meaning for me when combined with a look and an arm or a whole body lean toward what she wants.
We did use the Mayer-Johnson picture symbols when I first began teaching her the names of emotions. We used the picture symbols along with signs and words spoken and written and exaggerated facial expressions. I would drill her using pictures of babies with different emotions until she had them down. And then when she was having a particular emotion I would say, "Oh look Ellie, that's your happy face!" And I would mimic her happy face and also have her look in the mirror.
Once she learns things we can then move to asking her yes or no questions having her pick our hands (one signing yes and one signing no). Are you sad, yes or no? Are you cold (said signing the word cooooollllldd, yes or no (signing the word yes with the left hand and no with the right hand and bringing both hands very close to her so it's easy for her to chose which one she is, yes cold or no, not cold. Recently she has been able to make a fist and she will do so to sign yes. She loves doing it too - so awesome.
We also use the magnadoodle quite heavily to write down choices for her to pick from. We have three around at all times and often use all in tandem to get to the deeper meaning especially around making more complex choices. For example, she wants a toy but also wants to sing a particular song on that toy with mama or dada and fast or slow. This is a four layer choice sequence which is typical of our day.
That said when she is sitting on my lap we converse using spoken words on my part and some signs because those are harder to do when I am holding her. She will grab my hands meaning she wants to make a choice. Often we just interact like that if the magnadoodle is out of reach or we forget we need it. We joke using musical riffs. Sung notes that were originally part of a toy that became jokes in our exaggeration of them. She sings when she is falling asleep and has recently taken to using her voice to mimic these little musical riffs of 6 to 7 notes. I sing to her too to help her conquer scary things like brushing her teeth or walking in her Pony. Music goes a loooooooong way with Ellie. I have to be part mama, part Pied Piper.
Lately, she is getting really sophisticated in her expressed communications. Now she will pick up the pen of her magnadoodle and want me to write what she is thinking. This is hard because I can only guess. Luckily her school speech therapist is onto this and we are going to start the process of getting Ellie hooked up with some sort of voice output system.
When we are at home, communicating with Ellie is made easier because it's all in context. The context is familiar to the three of us and our conversations revolve around her toys, her day, her meals, games we play, songs we sing, etc. That said, now that Ellie is 5, it is increasingly challenging for us to expand her world in the ways that she would chose on her own without our help. It's an uphill battle in that I am always a step behind where she is. She is the leader here and Dave and I try to keep up.
As you can see, our day with her is very intense in that when she is awake, in order for her to play or do anything we have to facilitate the communication in the ways described above.
Overall Dave and Ellie and I have our unique ways of communicating like any family. Is it any harder than communicating with a child who can talk - probably. With some ingenuity and in the last year high level help from her school Ellie has taken her communication up several notches. As parents our personal mission is to bring the world to her until she can go get it herself. And so it is.
I hope this answers your excellent questions Sarai.