Monday, 1 September 2014

Sept. 1/14

Okay, so it's been a while.  But, that's a good thing!  Summer was awesome.  Katha slept most of July, and that is not an exaggeration.  There was one point where she slept 2 days straight.  She would only get out of bed to eat and then it was straight back.

However, August rolled around and we went to Montana like we do every year.  It was amazing to see the transformation of my little girl the moment we arrived.  She started talking more, and getting involved in what was going on.  She's walking straighter and doesn't fall down immediately when she laughs.

But let's go back.  Katha made a new friend this summer.  Her name is Clover.  She is a doll from Bamboletta Dolls.  My cousin Karen saw that they were giving away blessing dolls for kids who deserve them and she nominated Katha.  Katha and Clover have been inseparable ever since Clover arrived in the mail.  It was great for July because Clover slept beside her all the time.  In fact, Katha is quite protective of Clover and won't let anyone else touch her.

So, after sleeping most of July, we went to Montana and the difference was amazing.  She came alive, which leads me to believe that we should just constantly vacation, you know, for Katha's sake (ha ha!)

Then, last night we finally went to see Katy Perry.   Katha watched the whole thing very intently.  I didn't think it was too loud but she pulled out the earplugs I had brought and asked me to put them in.  Which worked out, because if I had tried without her consent, I'm pretty sure it would have been a fight.

After a little while she said it was too bright and wanted to leave.  Luckily, I had brought her sunglasses because I was worried how the light would affect her.  So, I gave them to her and she sat through the rest of the performance.

So far, the response has been the concert was okay.  I think maybe we should stick to movies.  Don't get me wrong, Katy Perry puts on a fantastic show!  I just don't think concerts are Katha's cup of tea.  They are too over whelming for her.  But, she was the coolest dude at the concert.

There were a couple times that I was moved to tears during the show.  Katha, after months of getting mad whenever I so much as try to brush her hair out of her eyes reached over and held my hand during the concert.  It was such a small gesture, but it meant a lot.  Knowing that this would probably be the only time I would have an opportunity like this with my little girl was amazing.  So, even if Katha wasn't overly impressed, it will be a night I cherish for the rest of my life.

The Rexall Place staff was amazing.  Twice we were led to the front of the line.  First to get into the building and again to get Katha a t-shirt.  Both lines would have taken us at least an hour.  Also, when we got inside, I found a staff member who led us directly to our seats.

Of course, I got lost getting to Rexall Place but once I figured out that Google will talk you through driving directions on your phone, I was fine.  It was even better finding my way out of Edmonton.  I'm sorry people of Edmonton, but your roads have an identity crisis.  You stay on the same road and it goes by 3 different names after driving on it for 10 minutes and your exits are confusing and I suck, lol!

So, onto the symptoms:

Enlarged Liver and Spleen:   No change that I know of.

Ataxia (unsteady gait): This changes quite a bit.  Some days she runs, some days she can't walk straight at all.  Right now, it seems she walking pretty darn straight and will often walk long distances instead of using her wheelchair.  But she is going to start using her wheelchair all the time at school because she can't look up to use the walker but it's too hard to navigate the halls full of kids by herself.

Dysarthria (slurred speech):  Katha loves to tell stories, but is really hard to understand.  I miss a lot of what she says and I'm the best at understanding her because I spend the most time with her.  We are happy to say that we are getting her EA back this year which is wonderful and Katha is actually looking forward to school and it's all because of that wonderful woman!

Dysphagia (trouble swallowing):   Katha chokes and doesn't have a strong cough.  It almost sounds like she faking, but she isn't.  It's like she wants to cough but simply doesn't have the muscle strength to do it.  But, she manages and it hasn't slowed down her eating.

Basal Ganglia (holding limbs at awkward positions): She does do this still but I haven't noticed it as much.

Dementia (memory loss):  Katha gets confused quite a bit.  In July we went swimming a lot at the new Abbey Centre down the road.  One day while we were there we saw her best friend from school.  Katha didn't recognise her and was a little upset that some strange girl was hugging her and following us around.  The amazing part was she just kept hanging out with us until Katha decided she was alright.  That little girl is fantastic! Her parents deserve a medal for raising a little girl that is so amazing!

Seizures:   Still seizure free.

Gelastic Cataplexy (falling down in response to a large emotional outburst):  Katha has improved on this slightly.  She catches herself again!  You can see it start to happen and  she will try to find a seat as fast as possible.

Sleep related disorders:  Katha has been sleeping sound for the first time in a long time.  The other night we forgot to change her before she went to sleep.  I was able to change her without her waking up.  Usually, I can't even open the door without her waking up.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  She can't look up and still gets panicked having to move her head up to look up.

Medication:  We have received calls from both the metabolic doctor and the drug program that they are trying to find a different program that will pay for our medication through the government.  I am expecting to get cut off for a while very soon.  Which causes some panic, but the drug program that we are on right now are still promising not to cut us off until something else is in place.  Hopefully, they stick to this promise.