Annie's Vision Therapist and Assisted Technology Specialist invited me to school today to show me a new assisted technology device that could help Annie communicate better and control her environment more. It's called the Dynovox with Eye Max. They have it on loan for Annie to try out for just a few days, so they wanted me to see how Annie uses it before we order our own for her. It is a computer that can track her eye gaze, which seems to be her most consistent form of communication and choice making. This device is incredible!
The screen can display different choices and all Annie has to do is look at what she wants on the screen, and the camera on the monitor will detect what she is looking at. She can manipulate different menus to go back, see more options, or stop an activity, etc. This device can also be used to manipulate her environment, like turn the TV on and off, etc.
I was amazed at how well Annie responded to this device and how quickly she was able to track with her eyes to different areas of the screen before she made her choice. With pictures of different activities on the screen, she can choose whether she wants a book, her beads, or a certain toy. And you can upload a picture of anything to include on the screen. I immediately started thinking about putting up pictures of body parts so she could answer us when we ask her where she hurts.
This is so exciting for us to hopefully be able to use this device to help communicate better with Annie and learn more about what she wants and likes. She was full of smiles as she was showing me how it all works. I can't imagine how excited she must be to have something that will help her own voice be heard! We're getting her own device to try out for a longer period of time, and then we'll hopefully be able to get one for her to keep from Medicaid. So, so exciting!
I'm realizing that with my photography blog, I'm not really posting many pictures on this blog any more. So here's some recent pictures of the girls that I've taken and even one of Justin and me.
These few are from a photography project I participate in online. (Lots more on my other blog.)
These are just because I wanted new portraits of the girls for my wall.
And today Annie's teachers pointed out that they couldn't find many pictures of Justin and me on our blog, so here's some! (They like to pull pictures to use for various activities Annie does at school.)
And this one just makes me laugh. It was also for a photography project. I did not ask them to pose... I just saw what Molly was doing and grabbed my camera quick! She had set up a backdrop for Lexie to stand in front of so Molly could photograph her with her toy cell phone camera. I love how she even has one eye shut like she's looking the view finder!
Last July when we met with the OT at the CDC Clinic, we requested an in-home consultation to discuss ceiling lift systems in Annie's room. The OT came today for that consultation. We were extremely discouraged when she saw Annie's room and vaulted ceiling and said a ceiling lift and railing system wouldn't work. She's recommending a hoyer lift, which all our Aicardi friends have told us is large, cumbersome, and takes nearly 10 minutes for a transfer--most keep their hoyers in their garages!
With Annie weighing 52 lbs now, we still feel perfectly comfortable lifting Annie by ourselves since we've grown used to her weight slowly over time. And we've been extremely blessed with a nurse who is comfortable lifting Annie too. But we fear that someday we'll have a different nurse that won't be able to lift Annie--we had several nurses in Texas who refused to lift her. So in order to make sure that we can maintain in-home nursing care, we know we need a lift system. But the consultation today was extremely overwhelming. We really don't want (or have space for) a hoyer, and the OT was even saying that 52 lbs is too big to be lifting into a bath chair. She was telling us about how dangerous it is to ourselves not only to be lifting Annie, but to be twisting our backs as we transfer her from her bed to her chair or bath chair. We aren't worried about it--maybe we should be--but the OT was explaining that we need to start the process of converting Annie's tub/shower into a walk-in shower. We thought about doing this when we built the house, but our builder wouldn't make any "handicap" modifications like that just in case we ended up not actually buying the house. So we always thought that down the road we'd need to convert her bathroom, we just never imagined someone telling us we needed to do it now. One of the issues is funding. We belong to a program that will pay $5000 a year for home modifications. It's a slow process to get approval and actually get the work done, so the OT thinks we need to start now.
After examining our ramp for Annie in our garage, the OT suggested that installing a lift in place of the ramp some day would also help. I had actually never thought about that before, but realized we'll need to do that once Annie starts getting a little heavier. Our ramp angle is much, much steeper than what code dictates and I know it will only get more difficult to push Annie up the ramp in her 90 lb chair.
It's an extremely overwhelming thing to consider--the reality that Annie is getting so big that some day we won't be able to safely lift her, or even be able to lift her alone at all. Today has been one of those "chronic sorrow" days when again, we realize how different our lives--and soon our home--are from the normal population. I wish so badly that we didn't need to worry about such extra equipment and home modifications just so our own daughter can live with us. It's incredibly difficult to plan such major permanent home modifications when we don't even know how long we'll get to have Annie with us. I so desperately wish that Annie could just wake up one morning, sit up, and get out of her bed herself--a small thing that most people take for granted. I look forward to the next life when Annie's body will be fully restored and she can run up to me and hug me and I can watch her dance.
But for now, our MDE supplier is going to bring a hoyer lift for us to try out for a few days to help us in making that decision. We already know we wouldn't use it--at least not anytime soon, but if anything, we could bring it in from the garage whenever a nurse came to take care of Annie. A hoyer requires a good 10 minutes or so to do a transfer--another reason I doubt we'd ever use it since we're able to lift Annie ourselves so quickly and easily. Another drawback is that the hoyer can't be used to get Annie in her bath chair with her current bathroom set-up since the hoyer can't get under the tub, but the OT suggested we could modify the tub so there's empty space beneath it, or just do a walk-in shower and get a bath chair with wheels. Anyway, here's a video showing how the hoyer lift works for those of you who have no idea what a hoyer lift even is.
One Aicardi friend has made the point that even though they have a lift system, they still lift their 85 lb daughter themselves in order to keep their muscle strength so when they are traveling or away from home, they know they will still be able to lift their daughter themselves. They realized that they will not always be where a lift is accessible, and I fully agree with that reasoning. So now that I've vented all my frustrations and overwhelming feelings, I'll return to my "normal" life. We'll try out a sample hoyer and probably sit on all these decisions for a long time--at least another year--and I'll try not to think about it all!
Annie's chronic diarrhea has been going on about 6 weeks now. She finished her round of flagyl with very little to no improvement. Her frequency has gone down slightly from about 4+ episodes a day to 2-3 episodes per day, but supposedly the flagyl should have completely solved the problem. So last week the pediatrician ordered us to do a stool sample which isn't the easiest thing on a child in diapers with liquid stool. But the culture confirmed that she has C. diff, which is exactly what the doctor suspected when he put her on the flagyl. For some reason though, she didn't respond to the the flagyl.
So now, after trying probiotics and flagyl, we're starting another new antibiotic: vancomycin. It's an extrememly potent antibiotic usually given by IV with some pretty bad side effects, but since Annie's bacteria are all in her GI tract, we'll be giving her an oral form which is not easily absorbed into the body, so hopefully we can avoid some of the negative side effects. We've been concerned about giving her this drug since it is so powerful--it will probably kill off all the bacteria (good and bad) which might allow fungus and yeast to grow which would be a big problem. Justin described the vancomycin to me as being "like taking a bazooka to her bowels". With it killing off so much good and bad bacteria, he suspects that Annie's diarrhea is going to get a lot worse before it gets better. We'll see.
We tried scheduling an appointment with the GI doctor before proceeding with such a hard core drug, but the next available appointment isn't until mid-November!! Omaha REALLY needs more doctors!! At times like this I wish we were back in Austin with all our old doctors who would get us in within a couple of days.
So we'll go ahead and try the vancomycin. If it doesn't work we'll see if our pediatrician can get us into the GI clinic any sooner. Annie still has no sheets on her bed and is still sleeping without pajamas and needing a daily morning shower. Hopefully we can get all this cleared up soon. We're all getting a little worn out!
Lexie started speech therapy about 2 months ago. The therapist comes about once a week and helps stimulate Lexie's speech through various activities, but also spends a lot of time training me on how to interact with Lexie and manipulate situations that force her to talk more. It is definitely not natural for me, so it's taking a lot of work on my part to try to implement the practices the therapist is teaching me. But Lexie is making good progress. When she first started therapy in July, she could say about 20 words or word approximations and she had never put two words together. Now she can say about 60 words or more (I'm sure there are more that I'm not remembering) and she is more consistently using two words together although most of her two word phrases involve the word "me" or "more". A lot of her words are still missing some consonant sounds, and of the 13 vowel sounds, she still can't say 3, but her word approximations are a big step and at least Justin and I can usually tell what she is saying. So YEAH for Lexie!
We now have soft water! After living in Texas for 8 years where the water hardness is only a level 5, we decided we didn't mind living with hard water and decided not to install a water softener in our house when we built it a year and a half ago. Big mistake! Little did we know that Nebraska's water hardness is a level 14! So after complaining about my difficulties in cleaning hard water stains, we decided it was time to get a water softener. After researching about installation, Justin decided to take matters into his own hands and do it all himself. And now we have soft water... and no leaky pipes, either!
Cutting and gluing the pipes
Installing the new pipes
Connecting the water softener
Securing it all
The newly routed pipes
Aaahhh, soft water is great! Thanks Justin! I have the best husband in the world!
Annie just started 3rd grade and is loving it. Molly is excited that she gets to be at Annie's school with her too. Generally, Annie has been very happy and healthy lately. However, she is still battling side effects of the antibiotic she took about a month ago when her doctor suspected she was developing pneumonia. (Just a warning: This post may contain "too much information" for some of you.)
The one dose of clindamycin that Annie took a month ago has seemed to completely throw off her entire GI tract. It is such a powerful antibiotic that it killed off all the "good" bacteria that's essential to normal GI function. This has led to several episodes of diarrhea each day and large blow-outs every morning over the last month. Which isn't all that bad in typical potty-trained children, but cleaning up after an 8 year old in diapers has been rather exhausting, especially each morning when it's nearly up to her neck and over the top of her tummy and bathing her is not a quick or easy thing!
At first we thought the "good" bacteria would recover once the clindamycin was out of her system, but after a couple weeks, the diarrhea only got worse. We quit Miralax after just the first couple days--a drug she's required since she was a baby because she's always been so constipated. We also decided to eliminate the extra fiber from her diet, but that made no difference either. After a couple weeks of diarrhea, Annie started menstruating, so we thought she might be having diarrhea related to that. We were at first rather alarmed since we thought she had started bleeding from her bowels, so we were grateful to discover she had only started her period--which is rather normal this early with Aicardi Syndrome. So the diarrhea continued for another week, until we finally called the doctor to figure out how to stop it. He put her on acidophilus and lactobacillus to help restore the "good" bacteria. After 5 days of that, she is still not showing any improvement. Now after 4 weeks we are starting a new antibiotic, flagyl, to see if we can get her better.
It doesn't sound like too complicated of an issue, but since Annie takes Cipro prophylactically, it impacts the bacteria in her system. With all her diarrhea, stopping the Cipro would most definitely cause a UTI which would only cause need for another antibiotic. We're hoping that Annie responds well to the flagyl, but highly suspect that it will cause vomiting, especially with needing 3 doses a day! If we continue a full treatment of flagyl with her vomiting, that could cause dehydration and an increase in seizures if her other meds don't stay down. And if she can't keep the flagyl down, it obviously won't solve the diarrhea.
So we'll start the flagyl soon and just hope that she can keep it down. We are SO grateful that our insurance covers chux pads so I'm not having to wash Annie's sheets each morning, and we learned quickly not to put shorts on her at night. And just this last week we learned we can't put a shirt on her at night either, and are even needing to start pinning a chux pad to her top sheet since I've had to wash it and even her quilt too many times lately. I'm amazed that she hasn't gotten a rash until just today, and we feel so blessed that she is otherwise so happy and healthy!
For one of my photography challenges online, we've been challenged to create a storyboard every day this week. It was fun to learn how to do this in Lightroom. I thought I'd share these here to mark the beginning of school starting for Molly and Annie. (To see the other storyboards I'm doing for this week's challenge, just visit Photography by Jodi Ann).
At the school open house last night, Molly was thrilled to discover 3 friends that are in her same class! One friend Avery is from church, another friend Aiden lives next door, and a third friend Abrahm was in Molly's preschool class last year! Molly's teacher this year is brand new and is excited to experience her first year of teaching!
Annie is excited to start school too, since things can get a little boring at home over the summer. She has her same fantastic special needs teacher as last year, and a new (to this school) teacher for 3rd grade. Her wonderful aide from last year is no longer there, so she'll have a few new people working with her. We're excited to have another little boy, Brayden, from church in her class too. It should be a fun year and I'm sure Lexie will appreciate all the extra attention at home!
You can click on the pictures to make them larger.
We took Annie up to the hospital yesterday to have a wheelchair evaluation with the physical therapist and durable medical equipment supplier. Annie's had her current chair for 4 years now and she is quickly outgrowing it. We went to this appointment anticipating being able to design and order a new chair for her. However, after the DME supplier checked her chair more closely, he's discovered that the chair frame actually still has a couple inches of growth. The seating system, however, does not.
So we will keep this frame for 6-12 more months, but we did order a new seating system for her to go in this same frame. Her back cushion will now be contoured to provide more distributed lateral support to help with her worsening scoliosis. Her bottom cushion will be about the same as before, except it will better accommodate her two different leg lengths to give equal support to each leg. They are also ordering longer extenders for her foot plates to allow them to be adjusted lower for her long legs. We also ordered a foot plate ledge to prevent Annie's feet from falling back behind her foot plates and then getting cut when she has a seizure. She'll also get new foot plate covers since she's worn her's through, and a new butterfly harness since we took her current one from her standing frame to use on her chair. They agreed we shouldn't have to use safety pins on chest harnesses like we've had to do.
I'm excited to get a new seating system to help Annie be more comfortable. It will be nice to try out some of these new features on this old frame so when we do order a whole new chair we'll know what we like and what we don't. Because insurance approval is an incredibly slow process, and our private insurance must decide how much, if any, they will cover before it is then sent to Medicaid, we don't anticipate receiving these new parts for her chair for about 3 months. Which is not too bad considering it usually takes 4-6 months for a whole new wheelchair!
This is a picture of Annie on the day we first received her Quickie Zippie IRIS when she was just 4. (Her first wheelchair was a KidKart Xpress that she used from 1-4 years old.) It's amazing we ever had this chair adjusted so small!
We heard that Nebraska soil is so rich that you can plant just about anything and it will grow. So we experimented this year with our very first garden ever. We tilled up about a 7 by 5 foot piece of land on the lot next to ours. Justin did all the planning and planting. In just that small area he planted a whole seed packet of beans, a whole seed packet of peas, a whole seed packet of brussels sprouts, two cucumber plants, one cherry tomato plant, and one grape tomato plant!
Because our little garden is surrounded by empty lots full of weeds, it was difficult at first to keep it weeded well without knowing exactly what was a new plant and what was a weed. The weeds also grew so quickly in our little garden, that at one point early on, Justin had to use a rake to get up all the weeds. In the process he tore up all the beans and peas. But that ended up being ok because we clearly needed all that room for our cucumbers and brussels sprouts. We have quickly learned that anything grows in Nebraska. Since our garden is not actually on our property, I tried rotating our sprinkler heads to hit our garden, but it wouldn't work, and it didn't matter anyway. We never watered, rarely weeded and just watched things grow. We haven't had the common bunny problem most of our friends have, but we did get some bugs eating our brussels sprouts at one point.
Our garden has been very productive so far. One day Justin brought in 16 cucumbers, in addition to the 6 that were already on our counter. So he decided to make homemade relish and canned 12 jars! We've had tomatoes and cucumbers coming out our ears and are worried about when the brussels sprouts start producing! Too bad we didn't get to grow peas or beans this year. But we've learned a lot about what to do differently next year--get a bigger space, and don't plant full packets of seeds!
Our garden--brussels sprouts on the left, cucumbers in the middle, and tomatoes on the right
Brussels sprouts on the left, cucumbers on the right. (The sun was obviously too bright for Molly and Lexie.)
All donations are tax-deductable and help fund research, the biennial ASF Family Conferences, and medical equipment for affected children like Annie. Donatations made in honor of Annie and for her benefit are greatly appreciated.
Annie's Song of Love
Songs of Love is a non-profit organization that writes personalized songs for critically ill children. Annie received her Song of Love for her 4th birthday on May 24, 2006.
She's With Me
This is a beautiful song by Collin Raye, written about his granddaughter with neurological disabilities. It really touched me since we have our own daughter with Aicardi Syndrome, a severe neurological condition. There aren't many songs out there about children with disabilities and their impact on people's lives, and this one seemed to be just so perfect. I love this song.
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