It all started a couple weeks ago when we found out we had been nominated for some renovations for our house through a charity called "Neighbors" through "A Better World Canada". One of the families at the kids' school had been nominated last year and wanted to nominate someone else this year. So, they asked at the office, and the amazing office staff recommended us.
A few days later Neighbors contacted us and told us that we were one of three families being considered. They came to our house and sat down with us to find out what our needs would be. Then they told us that we would know if we have been chosen by the end of the week.
Well, the end of the week arrived and we got another call telling us that they needed to bring out a plumber to figure out if our needs are feasible. Then we got another call telling us they needed to bring out an electrician to find out if our renovations were feasible. However, when they showed up at the door there was no electrician. There was however a video camera, streamers and balloons. They told us we have been chosen for the renovations!
They will be here most of June and will be figuring out a way for Katha to get into the house in her wheelchair (so either a lift or a ramp or a combination of both), turning the boys room into a bathroom with a walk-in shower and turning the main bathroom into a main floor laundry. The boys will have to move downstairs into Katha's old room, which they are very excited for.
During all of this Katha's EA sent me a text telling me about a family whose looking to sell their wheelchair accessible vehicle for a very reasonable price. I immediately contacted the person who had sent out the e-mail and told her that we would definitely be interested. She put me in contact with the gentleman who was actually selling the vehicle. We called back and forth a few times and today they stopped by so we could see the vehicle.
Well, they stopped by to let us look at it and then GAVE us the van. So, I say again, God is good. I am so amazed with people's generosity. It wasn't 2 months ago where I was crying to Amory asking what we are going if Katha has a seizure and needs to be in a wheelchair full time immediately. His answer was "trust God" and boy, was he ever right!
So, Amory is still laid off from Evraz, but he has found a new job painting lines on the highways. He started last Monday. The downside of this job is that he will be away for 24 days at a time. For the past 2 months I have been working at the movie theatre in Red Deer. It was an interesting 2 months but Katha did not react to it very well. She started hitting her brothers more, not cooperating with her EA as well, she even bit me once, which she has NEVER done before. So, once Amory got the new job, I immediately quit my job and everything is starting to settle down once again.
Katha's memory has been slipping more recently. The other day she forgot Jarrome's name and one day she came home from school I asked her what she did with (her EA's name) that day and her response was "THAT'S HER NAME!" When she realises she has forgotten something she gets really frustrated and starts to cry. So, she has been crying a lot easier lately, but we're working on her using her words rather than resorting to crying.
She has a little cold right now and I have come to realise that she can still cough but as soon as she thinks "I have to cough", out comes this extremely fake cough/grunt thing that makes me giggle.
Enlarged Liver and Spleen: Still the same
Dysarthria (slurred speech): Katha is very hard to understand. Most people have to look to me or her EA for a "Katha translation". I, on the other, find I can understand most little kids, whether they are familiar to me or not.
Dysphagia (trouble swallowing): Katha's kisses are very slobbery, but they are also very rare. So, I guess you take what you can get. She still chokes quite a bit but she also recovers by herself just fine.
Basal Ganglia (holding limbs at awkward positions): This is pretty constant now especially when walking or trying to do something difficult.
Dementia (memory loss): This is definitely becoming more prevalent and it's frustrating her. I think we're heading into a transition period for Katha and I hope it's not too difficult for her.
Seizures: No seizures that we are aware of.
Gelastic Cataplexy (falling down in response to a large emotional outburst): This has still stuck to mostly just laughter, which we are very thankful for.
Sleep related disorders: Katha has been sleeping in a lot lately. She has also been known to wake up several times a night. If she is up in the middle of the night she generally sings herself back to sleep. (Not the worse thing in the world to wake up to.)
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): Katha has good days and bad days with this. Some days it's hard for her to look anywhere but straight forward, she only has a little difficulty looking around.
Medication: I got a call from the drug company on Thursday and there is a group that advocates on behalf of patients with rare diseases to have their medication funded through the Alberta government. Hopefully, they will be able to get the bill passed before the drug company decides to cut us off to make things progress.
Again, thank you for all the love, prayers, hugs and everything that so many of you have done for us. It truly means more to us than I can possibly put into words. I only hope that one day I can return the same amount of love and generosity that has been shown to us to others. My family, friends, neighbors and even strangers are amazing beyond all measure.
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