Sunday, 21 July 2013

July 21, 2013

So, we've had a couple of appointments in the last couple weeks.  The first one was not fun.  It was the appointment with the ophthalmologist.  It would have been no big deal, but they had to lean Katha's head back to put drops in her eyes to get them to dilate.

For those of you who don't know, Katha can't look up.  For some reason tilting her head back causes her to go into a panic attack.   So, at first the nurse and I tried leaning her chair back and that didn't work.  So, then we tried laying her on the floor but she didn't like that either.   Finally we laid her down on the chairs with her head in my lap. 

We ended up holding her down while she kicked and screamed and had a look of sheer terror on her face.  All the while she was screaming "I want my mommy" while I'm trying to hold her down.

After we had finally got some drops into her eyes we were told to go back out into the waiting room to wait for the drops to take effect.  While we were waiting I realised that Katha had bit into her lip so hard that she was actually bleeding.  Once I realised this I broke down in the middle of the waiting room.  Luckily, they were having a pre Stampede parade parade for the kids at the hospital and it was going by the windows in the waiting room.  Everyone was so pre-occupied with that that I was able to have myself a little cry while everyone was watching the parade.

Once we got all that done the doctor told me that Katha's eyesight has gotten slightly worse but nothing bad.  Also, there is some damage done to her ocular nerve which is the reason her eye movements are so slow.  She also said there is nothing they can do for that.  However, they want to see her again in October when the school can voice their concerns for Katha's eyesight as well.  The doctor also recommended we get an I-Pad so we can enlarge it or put it up to where Katha can see it for school.
The other appointment we had was a physio assessment.  That went really well because it was basically an adult playing with Katha.  She loved it.  They let me know to keep her active as much as possible, gave me a few exercises that we can do with her and told me that she is very good at knowing her own limits, but don't be afraid to push her a little.  They also probably won't be able to get her into their regular cycle until after school starts.

Other than that we have just been enjoying summer.  We had a trip out to Manitoba to see Amory's dad, Don and we will be going to Montana next month.  We are very excited for that trip!

Onto the symptoms:

Enlarged liver and spleen:  Still the same, liver is good, spleen is slightly enlarged.
Ataxia (unsteady gait):  Katha is running more, which is nice to see.  She doesn't fall down too much but is still has a very heavy walk.

Dysarthria (slurred speech):  I find most of the time people need me to help them understand Katha.  Even with myself I get one or two words and can figure out from there what she is trying to say.

Dysphagia (trouble swallowing):  Katha is choking more on water and other liquids.  We should hopefully be hearing from Occupational therapy in the next few months so that we can get a swallowing assessment done.

Basal Ganglia (holding limbs at awkward positions):  I haven't noticed a lot of this lately, although she has started turning in her feet almost all of the time.

Dementia (memory loss):  I find Katha forgets things fairly quickly now.  When we go out to a restaurant and she has to go to the bathroom, by the time we get out of the bathroom she will have completely forgotten where we were sitting.  She also forgets people she's only met once or twice or hasn't seen in a long time pretty quickly as well.

Seizures:  Katha still has not had any seizures.

Gelastic Cataplexy (falling down in response to a large emotional outburst): We are always looking out for this.  It still happens mostly when she is tired.

Sleep related disorders:  She still has a hard time going to sleep.  Although, she tends to be able to wake up not to badly.

Sensitivity to touch:  I haven't noticed any signs of her being sensitive to touch in the last few weeks.

Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down):  Some days are better and some days are worse.  However, even on her good days she can't look up as high as someone normally would.