So, it's been about a year since I updated. So, it's time!
We have been going to Calgary for Katha's procedures for over a year now. It has been so much easier but we definitely miss California, especially the people. Also, the drug company cut out any reimbursements for travel expenses which has been difficult but we are making it work. Luckily, the doctor let us book a later time so that we don't have to stay overnight anymore.
Katha started school at the local school after running into a lot of difficulties trying to register her for home schooling. The boys school said they would help with Katha and that we should register her there. So, that's what we decided to do.
It started out great! She got to school a few times in the first couple weeks of school. Then, on September 11th, she had an operation. It didn't go quite as expected and there was no way that she would be able to attend school. We ended up going back and forth to Calgary a lot.
Then, in October, we had to rush to the local hospital because of what we thought were complications from the surgery. Turned out that Katha is also diabetic. It took a while to find out if it was type one or type two because, of course, Katha showed signs of both.
At first, that was a tough blow, thinking of all the pokes she was going to have to endure when she's already had to go through so much. Not to mention, she has no drug coverage because of the $10,000 biweekly that her Zavesca was costing out insurance. But, we were told that she would have drug coverage again come December 1st. She now has drug coverage again which is going to all of the medications and supplies needed for diabetes.
The diabetes nurse gave her a machine that monitored her blood sugar with a sensor that sits on her arm and only had to be changed every two weeks. Also, she was only getting a little bit of insulin so there was only one needle a day at the beginning.
We had to change her diet slightly (thank God for Fairlife chocolate milk that's lactose free and only half of the sugar!) but we caught the diabetes early. She is right now going through what is known as a honeymoon phase and isn't on insulin at all and hasn't been since November.
However, she is type one diabetic and will have to go back on insulin eventually. Hopefully, it won't be too much.
Katha isn't really walking by herself anymore, but she's still standing on her stander everyday.
After all the casting last year, her feet are back to being pointed, even with wearing the braces everyday. That doctor figures we will probably have to put Katha in casts for 2 months every year. It's kind of a pain, but she is so much more stable when her muscles are stretched.
We are restarting casting in March. I hope it doesn't hurt her too much.
The complications from Katha's surgery have subsided and we are able to get back into her regular routine. However, she is so over school. It's just not worth taking her. I have to drag her into school where she is miserable the entire time she's there. I'm thinking it might be time to have a chat with the school about getting her registered for home school next year. The problem is that the Alberta Government wants parents to agree that the home schooled children will have certain abilities by a certain age and they will check that they are learning these things. Things that would make absolute sense with most kids but Katha is never going to be able to read or things like that. So, it's all very frustrating.
We did finally get her adult wheelchair. Remember the expression "be careful what you wish for because you just might get it", this wheelchair is the physical embodiment of that for me. Well, it was at first. It scraped everything, couldn't get over the smallest bump and was almost too big for the doorways. However, we have gotten used to it since March. Katha doesn't really push herself around anymore because it is big and awkward. We are very thankful to have a wheelchair that Katha fits in and doesn't fall apart all the time.
So, it passes through my mind a lot that back in 2012 we were told we would be lucky to have 5 years and here was are, going onto 7. We are so grateful everyday to be able to play, talk and interact with Katharina, or as I have recently nicknamed her, Fargle Schnoogen. (I called her Katha and she corrected me to Katharina so I told her since I had named her I could call her Fargle Schnoogen if I wanted). We love her laugh, her singing and most of all, her sass. We are so thankful to have this amazing experience of just knowing her incredible strength and personality.
So, onto the symptoms:
Enlarged liver and spleen: The same as far as I know.
Dysphagia (trouble swallowing): We had this retested, she is having slight trouble swallowing and they recommended that we thicken her liquids.
Basal Ganglia (holding limbs at awkward positions): Katha has a hard time holding her hands out to be washed. They are basically always a little curled and she cannot walk or stand flat on her feet, she is on her tiptoes whenever she stands.
Dementia (memory loss): Katha has no sense of time and unless she really knows you, she probably won't remember you. There are very few people Katha bothers to remember.
Seizures: Still none
Gelastic Cataplexy (falling down in response to a large emotional outburst): So, I have recently discovered that this is actually a type of seizure. So, I guess Katha does have a type of seizure but they don't seem to effect her cognitive ability at all. Plus, it's fun to make her laugh so hard she "passes out". In fact, she will sometimes do it to herself.
Sleep related disorders: Katha has a very hard time going to sleep a lot. She will often get her days and nights mixed up. There have been times where she wakes up at 10 PM and will be going to sleep at 7AM. This is another big reason it's hard to get Katha to school
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): This has been pretty good anytime I've tested it. She has trouble looking up but can look further up than when she was first diagnosed.
Hearing Loss: Honestly, I couldn't even tell you where her hearing aids are. She hasn't worn them in probably a year.
