We still have not received Katha's adult wheelchair. After getting measured again and having the test wheelchair for two weeks we got a phone call about a month later that the Occupational Therapist had to confirm that the chair fit. So, we booked a meeting with her and everything went well.
A couple of weeks later, we got another call that AADL had decided that we needed to "grow" Katha's current wheelchair. Which, essentially means to adjust it to it's maximum size. This wheelchair is still a child's wheelchair, and Katha is now taller than me, not to mention she's 170 pounds!
So, we went back to the store in Red Deer and they confirmed that the wheelchair would not be able to grow to Katha's size. So, AADL had to approve that. Then the kind of wheelchair we tested was no longer covered by AADL so they had to find one that was as similar as possible that would be covered. The good news is, the wheelchair has FINALLY been ordered. It could still take a few months, but at least it's coming in.
We have Katha's stander and it's amazing! It keeps her able to stand for exersize to help keep her calves stretched. With Katha, that is a big deal! It also has massive wheels so she's able to do things like try to catch her brothers.
In October, we were finally able to start Katha's casting. We did it for 2 months and Katha hated it. They were big, and clunky but she got through it. She was amazing as usual and we now have what are called AFOs. Which, is essentially a fancy way of saying that Katha has braces on her legs.
She wears them 12 hours every day and it helps to keeps her calves stretched along with the stander. She was able to pick a patter for them and although she's not a huge fan of them she wears them every day like the warrior princess she is.
Some of the big news is that we are finally going to Calgary for the procedures. Her doctor did the first lumbar puncture in October and things went very smoothly. We have returned to Calgary every 2 weeks since then and things have been going well.
The best part is that we come home right after the appointment and Katha is able to sleep in her own bed. You have never met anyone who loves their own bed as much as Katharina.
Things had been going well in Calgary up to the last appointment. Unfortunately, that was when our luck run out. Her doctor poked her 6 times and was still not able to get spinal fluid out. So, he has decided to bring in radiology to help guide the needle to be able to get into the spot he needs.
This, of course, brought us back to discussions of the port. He has put in a port for review by the drug company but had heard nothing back. To make matters harder, he thought he had finally made some headway and the drug company was sold. So, now we have to start all over at the beginning again. Hopefully the person who was in charge of making that decision keeps their job with the new company and it will get approved quickly.
There are other kids with ports for this medication, however, our doctor told us that the ports are meant for veins and not spinal fluid and he has found one that will withstand the medication and is meant for spinal infusions.
So, the reason I decided to update the blog today is because we had kind of a big day. Due to unforeseen circumstances, Katha's amazing EA has had to quit. Today was her last day. So, I made an appointment with the principal and we have decided to take Katha out of school. I'm sure there will be lots of paperwork to sort out and we'll have a day when Katha will be able to say goodbye to her class but essentially, she's done. She is thrilled about this decision, it's been a little harder for me.
This wasn't a decision we made lightly. It was really difficult because it feels like we're giving up. I know this was a battle we were going to lose eventually but it's still hard to admit defeat. However, Katha went to school for the first time yesterday in six weeks. I dropped her off at 11 AM and by the time I got there at 2 PM, she was meeting me at the door and telling me she was too tired to stay any longer. Apparently, she had been saying that since noon.
Also, the kids she goes to school with this year are not the kids she grew up with. They are from the year below her, so she doesn't remember them. I know she has felt all year like she is going to school with strangers. Not that the kids haven't been amazing, they have! They make her feel welcome every time she goes. It's just that, with the dementia, she just can't find it in herself to get excited about school anymore.
So, the fact that I have to fight her constantly to go to school when she is there simply to be social was a huge factor in deciding that it's just not worth it anymore.
Well, I think that's it for now, onto the symptoms:
Enlarged liver and spleen: She had an ultrasound done and I heard nothing so I guess it's the same?
Dysphagia (trouble swallowing): Katha will choke occasionally but is able to eat by herself still.
Basal Ganglia (holding limbs at awkward positions): This is what we've been fighting with the casting. So, obviously, it's bad in her legs. Her arms are still held at awkward positions frequently.
Dementia (memory loss): Her dementia seems to be improving. She now remembers that Jay is a boy and not a baby. But, that probably has a lot to do with the fact that Jay has found a new love of annoying his older sister whenever possible. It's amazing to see them interacting because they never really have before. In fact, when her casts came off, the doctor told me that we would have to tickle her legs to get them desensitized and I knew just the boy for the job! Jay thoroughly enjoyed his task.
Seizures: Still none.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This seems to be improving as well. In fact, at our Simon Christmas we usually have a little program every year. This year Katha's cousin Emma sang for us and Katha KILLED herself laughing the entire time but not once did she lose consciousness!
Sleep related disorders: Katha usually gets her days and nights mixed up at least once a week. She will be unable to sleep until 3 AM then will sleep in until noon. It usually takes her a couple days to get back on track.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has trouble looking up but is able to do it some days.
Hearing Loss: Katha still hates her hearing aids and doesn't seem to need them.