Tuesday, 23 April 2013

April 23, 2013

So, this past weekend we had Katha's Bon Voyage party.  It was a pool party at the Collicutt Centre.  This was put on by Make-A-Wish and we got to invite Katha's class.  About 17 kids turned up, and it was snowing, so we were pretty happy with that.   Katha went down the water slide twice by herself.  She was very proud of herself and I was proud of her too!

At the end of the party Jaclyn and Kirby (the women in charge of making Katha excited for her trip) gave us a package for our trip which includes our itinerary.  I spent the rest of the day looking through that package, that's how big it was! 

I cannot say enough good things about Make-A-Wish.  Seriously, the next time you're looking for a charity to donate to, I would recommend Make-A-Wish.  They thought of everything and have been so kind and generous to us.  I feel like we're taking advantage.

Last week, I finally started to get a hold of Alberta Aids Daily living to get some help with Katha's supplies.  After calling 5 different people they told me I need to have another assessment done to find out Katha's mental age.  The last assessment only told us what percentile she is performing at compared to her peers.  I don't know if I mentioned it before so Katha has the cognitive ability under the first percentile in relation to her peers.  So, that means, most kids her age are at about 50% she is under 1%.  However, she currently performs between 20 - 25%. 

The people that administered the assessment were actually amazed at how hard she tries to keep up.  Which gave me some peace of mind, one of my biggest fears is I'm not expecting enough from her, and not pushing her hard enough to keep up.

Jarrome actually got an assessment done today to see if he will get into Pre-K.  The results are not supposed to be in for another three weeks.  But, after explaining our situation with Katha and being worried about Jarrome she let me know that he is doing alright.  Pretty average for his age, he is ahead in some things and behind in others.  She thinks he will get into Pre-K, which would be awesome because then Dominik wouldn't have to go to school alone anymore when Katha is sick.

Katha has a cold and I kept her home yesterday thinking that she would feel better with more rest.  She woke up like she was going to get on the bus, and didn't have a nap all day.  So, today I thought "that's it, you're going to school!"  The teacher called by 10 AM to ask if I would come pick her up.  Because of Jarrome's assessment she ended up staying at school and they told me when I got there that she was actually a lot better now.  But, as soon as she saw me, she wouldn't leave my side.

We don't get on the air plane for Florida until 5 minutes to midnight.  So, that afternoon I've booked a meeting with Katha's teachers and her doctor.  He is actually driving in from Calgary for this meeting at the school.  I must say, I was shocked that a doctor who has a 6 month waiting list would take off an entire afternoon just for us.  Anyways, at this meeting I plan to ask him about supplements because Katha is still losing weight, and I think it's time we start seriously considering this.

We got a letter back from the government that we can now claim Katha as a disabled dependant on our taxes.  We can also write off any medical expenses, and we can go back to when she was born and re-file her as being disabled.  Hopefully, this will help with future medical expenses.

Other than that, I can't think of anymore updates, so onto her symptoms:

Enlarged liver: Still enlarged, still the same size, as far as I know.

Enlarged spleen:  Same as the liver

Ataxia (unsteady gait):  Katha still falls down a lot.  The other day she fell onto her back and started SCREAMING "I DON'T KNOW WHERE I AM!"  over and over again until Amory finally helped her up.  The next day she fell on her side and immediately said "it's okay, I know where I am."  It was in the middle of Jarrome's birthday party and I immediately burst out laughing because that was her greatest concern when falling.  We went on a bike ride the other day and I have to push her from behind because her thigh muscles aren't strong enough to do it by herself.

Dysarthria (slurred speech):  Katha's speech is still hard to understand but she tries really hard.  Although, a lot of the time, she's just too quiet to understand.  It gets frustrating when she won't talk above a whisper, but I think she does this because she is worried that someone won't understand her when she is speaking loud enough.

Dysphagia (trouble swallowing):  She choked on a piece of steak the other night.  I have been so worried because she won't cough properly.  Luckily, she got it up all by herself.  We have been cutting little bitty pieces for her ever since, and she hasn't had another problem.

Basal Ganglia (holding limbs at awkward positions):  I noticed her doing this just walking down the stairs at the doctors office today.  I think when she's doing something that is more difficult for her such as walking on ice or going downstairs, her limbs just tend to get held at awkward positions.

Dementia (memory loss):  Her memory is affected, but it's not as bad as it could be.  She was playing a memory game today and she kept picking the same tile over and over again because she wouldn't be able to remember what it was otherwise.

Seizures:  Still no seizures.

Gelastic Cataplexy (falling down in response to a large emotional outburst):   This is starting up again more and more.  Hopefully, it will keep itself down enough that she won't need additional medication for it.

Sleep related disorders: Katha seems tired most of the time right now.  Yet it takes a while for her to go to sleep.  Any physical exertion seems to drain her.  Although with her losing weight, the fact that she's not often physically coordinated enough to run without falling, and that she often just wants to be alone, I don't push her to get up and be overly active anyway.  The boys on the other hand never stop moving.

Sensitivity to touch:  Katha still enjoys her cuddles with both Amory and I.  She will also shake people's hand and hug other family members.

A lot of these things will be bad one day and good another.  Keeping track of her digression will not be as easy as I thought it would be.