Again, it has been to long since I have updated Emma's blog and I apologize.
Emma has been doing not to bad since the last update. She has been on antibiotics again for throat and sinus infection, but not chest!! I think that is always good news. She still continues to be on oxygen more than not, but will have a few good days she can go completely without. She continues to receive suctioning, chest physio and inhalations daily.
Right now, Emma's biggest challenge is her night. She is now having sleep apnea spells where she will quit breathing and wake up gasping for air. The pause lasts only about 10 seconds at most, but that is too much for me. It can be resolved with positioning of her head. She used to stay exactly how I positioned her, but now she kicks herself into all kinds of weird positions throughout the night. So, needless to say, I am getting up with her quite a bit during the night to re-position her. I have gotten a hold of her Respiratory team in Winnipeg and since they had her discharged a while back, we have to go through the referral process again. I am hoping to get a sleep study done on her when we are in Winnipeg at the end of November to see if they can catch one of her spells.
Emma will be getting a new EEG done also at the end of November. I am excited and nervous at the same time. It has been 3 years since she has had one done and I am excited to see the difference. She hardly has seizures anymore, usually just when sick, so I am hoping the EEG shows a change for the positive. I just hope she isn't having seizures that are not visible.
As for Ophthalmology, I am having a battle right now. She is long overdue for an appointment. I refuse to take her to her regular Ophthalmologist, mainly because of his lack of bedside manners. at her last C.N.I.B. appointment, her OT told me about another partner he has, so we have been referred to him. I spoke with his secretary yesterday and she told me waiting period for an appointment is now 18-24 months. What??? Considering that was what Emma's lifespan was supposed to be, I find this so unacceptable. So, hopefully, they can make an exception. Her vision has improved greatly over the last few years, and I find since she has been off Vigabitrin, it opened a whole new world for her.
All in all, she has had no seizure med changes for over a year now, and she continues to improve daily. Her PT and OT are looking into getting her a walker to see how she does in it. This also excites me. Right now, Emma is limited to her Peanut Roll for equipment. She has outgrown her stander, her wheelchair isn't fitting right, and we took her Chill-out chair back to the school. We have to wait until the end of October to get her stander refitted and who knows when they will get her wheelchair fitting properly. Everyday is a new battle, but I would not trade it for anything in the world.
Thanks for reading!
