There is a LOT that goes into having a "medically complex" kid. A lot of it happens behind the scenes and even our family and closest friends are unaware of what is involved. Honestly I think even my husband is, since I handle a lot during the days while he's at work. In addition to regular care of a child there are the additional demands. Everything takes extra time. Dressing, diapering, toileting, and positioning. Things that a child normal does herself. Then there is the medical stuff: tube feeding, suctioning, cleaning the stomas, ordering and stocking and cleaning medical supplies and equipment. Beyond that there is the "therapy" ie. working on eating, speaking, Ainsley's communication device, stretching her legs(from her hip surgery), standing, walking, fine motor (drawing, cutting, picking up little things) and then there are her educational needs because really she needs additional help to learn the alphabet, colors, shapes, numbers, animals.....well everything really. Her schooling requires an IEP and a fair amount of coordination and she receives PT, OT and Speech therapies through them. And lastly there is medical planning and scheduling. This is huge and can take a LOT of time. Researching conditions, treatment options, finding products and services that help and then eventually scheduling and coordinating those appointments and surgeries. When I say it it is a full time job I'm not kidding. It's that and then some.
So here is a little (okay big) update with what's been going on. Ready?! Set. Go.
Ainsley will be in Kindergarten next year. Since she's been in preschool at the local school since she was 3 I don't expect this to be a difficult transition. We met with her teacher on 3/5 to discuss it. The school district hasn't made assignments yet because they may be opening a new school and that would affect assignments throughout the district. However we expect that Ainsley will continue at the same school she is currently at. She will be in a "learning center" classroom, which is smaller in size to accommodate kids with special educational requirements and she will try to do some hours in the typical classroom.
I'm not sure how often I've talked about it on Ainsley's blog but she has difficulty safely swallowing large volumes, ie. she gets tired after so much swallowing(the amount varies from day to day). Just as the rest of her muscles get tired from low tone and her cerebellum issues, so do her swallowing muscles. And when she gets tired she could accidentally get food into her airway which would be very bad for her lungs. Regardless, we've worked really hard on self-feeding and it shows. She requests (with sign language) to drink her formula orally even if it is only a little. She also mouths table foods every night at dinner. Although she started OT when she was a baby and I continued the techniques I learned 4 years ago she is stuck at the same place. She is less interested in puree and won't eat any puree with any texture in it so bridging the gap between smooth purees and actually swallowing table food is where we are stuck. Every time I add small amounts of texture she will do okay until I reach a certain point that is "too much" and she rejects it. We need help.
A frustrating aspect of having a medically complex kid is that everything is related and is a process that takes time. I'd planned to request a referral to a feeding therapist at her cranio-facial clinic appointment. The soonest appointment was over 2 months away in December. Then December came and she got sick with RSV and the appointments all had to be rescheduled. Then it was February before we could get in and after the appointment we had to wait for a referral. Then we had to wait for an opening. So although I started the process in the fall it will be spring before she actually sees the therapist. 3/28 to be specific. Let's hope nothing happens and that the therapist has good ideas to help Ainsley. It is not uncommon for children with trachs to have difficulty eating. Normally our physiology doesn't allow breathing and eating at the same time, but having a tracheostomy does and increases the risk of aspiration. Plus she may have diminished taste and oral sensation due to the lack of airflow through the palate. Having a cerebellum malformation in addition to a tracheostomy makes it just that much harder. Many kids develop an oral aversion but luckily Ainsley wants to eat, so that should help. I'd love to get her into an intensive feeding program but I'm not sure they will allow that. And with her high caloric needs it's unlikely that she'll be 100% tube free anytime soon. But we shall see.
We started using PECS cards and sign language with Ainsley when she was under 2. She then graduated to more and more complex communication devices over the years. I have compared the options and even went through an evaluation at the hospital last year just weeks after Ainsley's eyelid surgery. The timing was bad so I decided to put off the decision. Usually insurance will only pay for one device every 5 years so it's a big decision and you really want to get the right thing. The device they need at age 4 could be very different from what they need at age 7.
When we moved into the Lake Washington school district we lost the Vantage and it was agreed that we would try an IPad with communication software on it, provided by the school. It requires a lighter touch and different skills we wanted to see how she would do. After "playing" with it for nearly 6 months she has progressed a lot. She can even swipe to scroll through pages. She manages to change the wallpaper, move icons around the desktop and even get onto YouTube (scary!).
It's amazing to look back. There was actually a day when part of my "therapy homework" was to working on teaching her to point and it was really slow progress. It was too hard for her to keep her arm steady, she couldn't keep the other fingers out of the way and it was hard for her to guide her hand to the precise location.
Last year I started the process to get a re-evaluation. This too requires a referral in the system, copies of her IEP and speech evaluations, signed forms, completion of a lengthy questionnaire etc. I'd heard about a new communication device that would be coming out at the end of the year called the Nova 7. My fingers were crossed that this was the "one" and it was. Things I like about it: better pronunciation of basic words, handle and neck strap for portability, a sturdy stand(IPad doesn't have this), a built in amplifier for use in loud rooms, touch screen technology(with Gorilla glass for durability), a rubberized case in case she drops it, a child's voice(nice to have for a child so Ainsley doesn't sound like an adult with a British and Bostonian accent who doesn't know English very well), software to allow programming on the PC (instead of just the device), and continuity of use (the Nova 7 can use the same screen layout as her current AAC).
Paperwork was submitted this week and we are waiting for funding authorization to come through. Here are some pictures and video of her with the new device. We're also waiting on a referral for a speech therapist to work on vocalizing. I haven't given up on that yet.
A close up.
You can see she loved it. It comes with a stylus too, a nice feature until you lose it.
It uses the Android platform. Here it is next to the IPad so you can compare size. I asked her and she said she likes the Nova 7 better.
|3. Pick out brace material. Fun. Ainsley chose butterflies.|
|5. Add water and make gooey plaster. Things start to go bad.|
|7. Cut cast off. Tube protects skin from being cut.|
8. The orthotist inspects the cast