Saturday, 24 November 2012
This has been a very busy week for Emma. She was so amazing through it all. We decided to pack up and head to Winnipeg a day earlier due to freezing rain and snow warnings. It never fails to storm when we are supposed to go. So glad we did, as it was horrible weather in Winnipeg the next day. We were to go to Rehab Center for Children to get her stander fitted so I figured I would phone them a day earlier to see if they could fit us in. Turns out, he had no idea we were coming in so the stander wasn't ready. I guess telling me when he was here at clinic in Brandon to come in on the 23rd to have it fitted and he would have it ready for that date, plus penciling it in his book means nothing. He figured I can drive into the city again next week for a fitting, thinking it should be nothing to load Emma up and drive another 3 hours there and another 3 hours back for a fitting??? I wish people would seriously think before they talk. Now she has no equipment that she can use. Even her wheelchair has become very uncomfortable for her and her head is constantly tilting off it while driving or sitting in it. I sent an email to her OT and PT Thursday letting them know that this is very unacceptable.
Thursday, we went to the Children's Hospital to pick up their oximeter for her sleep study and since she had a request from her Genetics doctor for blood work for Cytogenetic testing, I wanted to wait until we got to Winnipeg to get it done as in Brandon, it took them 45 minutes and 3 lab techs to get 1 ml of blood out of her. We were in and out in Winnipeg clinic in 3 minutes with 2 full vials, no joke! I am very happy I waited it out.
Emma's sleep study went fairly well. What I thought may be possible Apnea spells was just her obstructing. Very happy to hear that. She is moving so much more and now flips herself onto her back when sleeping and with her head tilted back, is causing obstruction. It is just a matter of repositioning her. She has the oximeter to alarm me during the night when she does this, so it is very comforting. They also feel that she is doing very well with her breathing. Even though she has required oxygen more, they aren't worried because it doesn't take her long to get off of it. They feel the inhalations with Saline that I am doing are helping her tremendously and they said other inhalations would work for when she is sick only. The reasoning behind this is because with the Saline, she can clear her lungs out where she is between 96-97%. So if she ends up getting a Respiratory infection, they would prescribe inhalation treatments.
Then we were off to Neurology. Her neurologist is absolutely wonderful, not a bad thing to say about him at all. He was so happy to see Emma and he could not believe how well she looked and how good she was doing. He was talking to her and she would respond with her "yell" and he was absolutely shocked. He was very happy with her seizure control and especially the way she was responding to him. We did discuss a lot, in regards to different treatments and Boston study and is always interested in what I have discovered in our OS group. He thinks the group is an amazing thing for us to have!
After Neurology, I went out into the lobby where Gord, Jessica and Breanna were. Gord is showing me this book that he bought in the Gift Shop there. I said "OK?". He tells me to look at the author so I do and I said "And?". Well he said I bought the book because he signed it and I just laughed. I said "Whatever!". He said "No, he just signed it in the gift shop.". I said "He was in the gift shop??". Well apparently, Gord went into the gift shop and there was a man in there talking about these books to the lady that worked there. Gord told him he would buy a book if he signed it. So, he signed it and Gord bought it. Gord (who loves to strike up a conversation with anyone!!! LOL) started talking to him about Emma. He then gave Gord a card and asked him to give me this card. He said he is always looking for stories to write about (He writes Children's books) and he would love for me to call him when we got back to Brandon. He wants to set something up, to meet or whatever to write a book about Emma!! Well Gord tells me all this and I just sat down in the lobby and I don't think I said anything forever, I was so shocked!!! I finally text my mom right away and was telling her the story, still in shock!! I will call him and see what he has to say, could be very interesting!! Leave it up to Gord to start talking to this author! Maybe he was just in the right place at the right time??
So after all this, I am trying to put my brain into EEG mode. Normally, they don't allow anyone in the room, but made an exception for me. She thought I was maybe uncomfortable leaving Emma in the room with them, and I explained, "No, I am just very nosy and want to see the EEG." She was surprised and asked what I knew about EEG's and Emma's last one, so I explained everything I knew and she was amazed. I am by no means any expert, but have been watching EEG's the last couple of weeks so I knew what to look for. Her EEG was absolutely amazing when comparing it to her last one. NO burst suppression, ZERO. Her neuro came in during it and was very surprised, her said never in a million years would I have put this EEG to Emma's name. They were explaining things to me as we went along. We saw two Eliptic Spasms (This is what they called them) the whole EEG and he said before they were right across the page, along with Burst Suppression. I don't know for sure if he is saying "multi-focal" and I won't know until I get the report next week. I do know that she is still having slow spikes. I really don't know what any of this means, I just know her EEG has improved so dramatically from her last one and that her Lamictal/Keppra combo is doing absolute wonders for her.
After all these appointments, it is so nice to be home once again. Emma continues to inspire me and make me prouder every single day. Just when I think she has made me the proudest mom ever, she does more to surprise me. She deserves a medal for what she goes through daily, and through it all, rarely complains. She is also showing her personality more and more and brings me to tears when I think about how far she has come. <3 Love you Emma <3