Monday, 18 March 2019
4 years
Hello everyone. Thank you all for following our story and sharing in Emma's life. It has been over 4 years now since Emma has passed away. I could not bring myself to close this blog or update until now. I will leave it open in the hopes that it may help another family. Again, thank you all for sharing in Emma's life. I love and miss her terribly.
Tuesday, 27 May 2014
Long overdue
I just realized that it has been almost a year since our last update!
Not a lot has happened in the last year. Emma has been relatively healthy, one severe chest infection before Christmas and that has been it for pneumonia. This Spring she has been fighting a UTI so we are dealing with that right now.
The major thing we are trying to do right now is to get Emma's seizures under control.
We were very blessed to celebrate Emma's 7th birthday this year. Emma has been growing like a weed and is getting so tall. I have attached some photos from this past year!
Not a lot has happened in the last year. Emma has been relatively healthy, one severe chest infection before Christmas and that has been it for pneumonia. This Spring she has been fighting a UTI so we are dealing with that right now.
The major thing we are trying to do right now is to get Emma's seizures under control.
We were very blessed to celebrate Emma's 7th birthday this year. Emma has been growing like a weed and is getting so tall. I have attached some photos from this past year!
Monday, 17 June 2013
Birthday Fun & More!
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If you have not already viewed the album Cynthia Korman did for Emma's birthday, I suggest you do! She did such a wonderful job! Click the above link
Emma's birthday was perfect! Her and her sister had a fun filled day with lots of friends. The Brandon Sun came to do an article on Emma, and the cake she received from Icing Smiles Canada. Well Dressed Cakes by Brett made Emma's dream birthday cake, as well as Breanna's cake. I cannot tell you how much this meant to me. This is an amazing organization and Brett did an unforgettable job!! It was a very special day.
Emma started having a rough Spring, seems to every year? She started off with her heart rate so high, then breaking a fever, then of course, seizures. Once the fever was down, it seemed to stay away, but the rest remained. She was given a course of antibiotics, to which changed nothing.
I started brainstorming and thought of allergies/asthma and tried Allegra on her. This seemed to work well! A week later, she had greatly improved and we all started sleeping again ;)
We have appointments coming up in Winnipeg soon. (I am not telling Emma as she seems to have other plans every time we have an appointment) This will be our third attempt at getting into the city. I am hoping to find out if Emma can get testing for KCNQ2. This is the only one I have come across that makes "sense" to Emma. As most of you know, Emma doesn't have an underlying cause as to why she has Ohtahara Syndrome. For the most part, it doesn't matter and will not change her treatment. The reason I would like to find out the "why", is so I know if it something my kids will carry down to future generations or if it runs in other siblings in my family.
Emma is enrolled in the Boston Children's Hospital research study as well. Hopefully something may show up there as well!
We are really looking forward to a happy, healthy summer and wish you all the same! XOXO
Wednesday, 10 April 2013
Just like Christmas
I also want to do a huge shout out to President's Choice Children's Charity, as they cost shared Emma's new bed with CDS. Emma received her new bed a few weeks ago and it has been life changing. I am able to use her lift again, she is able to be in an upright position again, and most importantly, she can move all around her bed, safely.
Next week Emma has RCC clinic here and she will get her other equipment checked out. We should have her stander (YAY!) and they will also check her Soft Boston, AFO's and floor sitter to make sure it is good for the time being.
We also have a Neurology appointment in Winnipeg next week, along with Metabolics. It has been six months since her last appointment and I have so many questions for him this time. Emma has changed drastically in the last couple of years. Not many seizures, maybe on a good week,two? When she is sick, it is a whole different ball game. To give you an idea, when she was 3 months she had a 30 minute EEG and they recorded over 120 Epileptiforms. On her last EEG, they saw 2!
On the 20th of April, we will be celebrating Emma's 6th Birthday!!! This is huge for me (and her, of course!). I was told I probably would not see her 3rd birthday. She is such a strong girl and I am blessed for all she has brought into my life. This year, Icing Smiles Canada will be doing her birthday cake. They do cakes for critically ill children. When I saw their story on the news (just after Emma's birthday last year), I applied for a cake for her. Since they weren't incorporated yet, they weren't sure if it would be possible. Two weeks ago, I received an email from them and it was approved! The first cake will go out to a girl named Stephanie this weekend and the second cake in Canada will be for Emma next weekend. I will definitely post a picture.
Thursday, 7 February 2013
Epic Fail
Urban Dictionary lists the definition of Epic Fail as this: Complete and total failure when success should have been reasonably easy to attain. There could be no better title for this post.
Since we have been back from Emma's appointments in Winnipeg, she has been doing fairly well health-wise. The problem we are facing right now is equipment challenges.
Emma had issues with her hospital bed. She is starting to move herself around her bed and even with the body pillow in between the mattress and the railings, she managed to kick the pillow onto the floor and get her legs through the railings. She is a very strong girl and she ended up with bruises from the railings. As a mother, I would think this would be a very strong concern for her. Her team of workers did respond quickly to address the issue. We decided on a Posey Bed. It would allow Emma the freedom to roll around and not get hurt. This was November. It is now February. Her hospital bed is gone because it is unsafe and she is left with a mattress on the floor. No approval for a bed, nothing. Do you think CDS has followed up to see how we are making out? Nope. It baffles me how some organizations say they are all for the kids and at the end of the day, do they really care? I have been working with her team from the hospital to get outside funding from an organization for a bed for Emma.
Being without an elevated bed may be no big deal for some of you. It is a huge deal for us. Emma requires elevation while feeding. Her morning feeds were always in her bed while she slept, as her bed could give her the position needed. After Emma's bath, dressing her was on the bed at my hip level. I also used a Hoyer Lift to get Emma in and out of the bath. Now that the bed is gone and dressing her has moved to the couch, the Hoyer lift does not go to the couch. The sling has been retired for quite some time, collecting dust. I have been lifting her everywhere she needs to go, without the safety of the sling, which is against what her therapists have recommended.
Last Friday, Emma was in her wheelchair having "lunch". I grabbed the laundry basket and off I went downstairs to switch loads of laundry. Emma's oximeter started alarming full tilt, not just the regular alarm, and she screamed like I had never heard her scream before. I bolted up the stairs into the living room to find her hanging by her neck in her wheelchair, choking. The chest belt she had on, the zipper had split and she ended up literally hanging in her chair. This matter was brought to the attention of Emma's workers back in November when they were all here for the bed, and I never received any response back from any of them in regards to the seat belt.
As of today, the only thing I have for Emma to sit upright for feeding, etc., is a floor sitter, made by RCC. I do not by any means feel that this is a safe piece of equipment either, but we have to make it that way. When she first received it, she had ripped the Velcro tape right off by stretching out her tone. Keep in mind, this is a piece of equipment made by specialists who deal with special needs daily, it is their "specialty". I stress this fact because you would think their equipment would be safe and they of all people would understand what our children need. Emma's PT here ended up taking it to the hospital here to get things properly attached and secured for Emma.
Right now we are still awaiting approval for a bed, a Chill-Out chair and possibly a new wheelchair. I cannot hold my breath waiting for CDS to approve anything anymore as they just don't have the funds (so I am told).
The plan yesterday was for them to start tweaking things on her wheelchair again. I explained to them my feelings. It has not met her needs for quite some time and what is the point of all these adjustments if it is only going to work for another month, maybe 2? Her wheelchair right now is put away and will only be used if absolutely necessary. When I think of putting her in the chair, I instantly get panic attacks, shaking and nausea. Seeing her in the chair the way she was Friday is something I will never forget and I don't think Emma will either.
Since Friday, I have taken Emma to her pediatrician. He says her neck muscles are fine but her right gland is a bit swollen where she still had a red mark. She ended up with only a very tiny bruise on the back of her leg and a bit under her chin. She has a bald spot on the top of her head, called Alopecia...brought on by stress/trauma. She has been very jumpy to the touch but is improving. As a mother, I feel like I have failed her. I have one job, and that is to protect her at any cost and I didn't. I still can't.
I am at the hands of CDS. My daughter's well being is at the hands of CDS. If they say "No", she is the one that suffers the consequences. When you have a child with a terminal illness, you expect to fight and you expect it to be very stressful. You do not realize that most of the fight is to get what your child needs to have a comfortable, safe, stress free environment Unless you can afford to pay out thousands and thousands of dollars on equipment, you get the life CDS says you can have.
Since we have been back from Emma's appointments in Winnipeg, she has been doing fairly well health-wise. The problem we are facing right now is equipment challenges.
Emma had issues with her hospital bed. She is starting to move herself around her bed and even with the body pillow in between the mattress and the railings, she managed to kick the pillow onto the floor and get her legs through the railings. She is a very strong girl and she ended up with bruises from the railings. As a mother, I would think this would be a very strong concern for her. Her team of workers did respond quickly to address the issue. We decided on a Posey Bed. It would allow Emma the freedom to roll around and not get hurt. This was November. It is now February. Her hospital bed is gone because it is unsafe and she is left with a mattress on the floor. No approval for a bed, nothing. Do you think CDS has followed up to see how we are making out? Nope. It baffles me how some organizations say they are all for the kids and at the end of the day, do they really care? I have been working with her team from the hospital to get outside funding from an organization for a bed for Emma.
Being without an elevated bed may be no big deal for some of you. It is a huge deal for us. Emma requires elevation while feeding. Her morning feeds were always in her bed while she slept, as her bed could give her the position needed. After Emma's bath, dressing her was on the bed at my hip level. I also used a Hoyer Lift to get Emma in and out of the bath. Now that the bed is gone and dressing her has moved to the couch, the Hoyer lift does not go to the couch. The sling has been retired for quite some time, collecting dust. I have been lifting her everywhere she needs to go, without the safety of the sling, which is against what her therapists have recommended.
Last Friday, Emma was in her wheelchair having "lunch". I grabbed the laundry basket and off I went downstairs to switch loads of laundry. Emma's oximeter started alarming full tilt, not just the regular alarm, and she screamed like I had never heard her scream before. I bolted up the stairs into the living room to find her hanging by her neck in her wheelchair, choking. The chest belt she had on, the zipper had split and she ended up literally hanging in her chair. This matter was brought to the attention of Emma's workers back in November when they were all here for the bed, and I never received any response back from any of them in regards to the seat belt.
As of today, the only thing I have for Emma to sit upright for feeding, etc., is a floor sitter, made by RCC. I do not by any means feel that this is a safe piece of equipment either, but we have to make it that way. When she first received it, she had ripped the Velcro tape right off by stretching out her tone. Keep in mind, this is a piece of equipment made by specialists who deal with special needs daily, it is their "specialty". I stress this fact because you would think their equipment would be safe and they of all people would understand what our children need. Emma's PT here ended up taking it to the hospital here to get things properly attached and secured for Emma.
Right now we are still awaiting approval for a bed, a Chill-Out chair and possibly a new wheelchair. I cannot hold my breath waiting for CDS to approve anything anymore as they just don't have the funds (so I am told).
The plan yesterday was for them to start tweaking things on her wheelchair again. I explained to them my feelings. It has not met her needs for quite some time and what is the point of all these adjustments if it is only going to work for another month, maybe 2? Her wheelchair right now is put away and will only be used if absolutely necessary. When I think of putting her in the chair, I instantly get panic attacks, shaking and nausea. Seeing her in the chair the way she was Friday is something I will never forget and I don't think Emma will either.
Since Friday, I have taken Emma to her pediatrician. He says her neck muscles are fine but her right gland is a bit swollen where she still had a red mark. She ended up with only a very tiny bruise on the back of her leg and a bit under her chin. She has a bald spot on the top of her head, called Alopecia...brought on by stress/trauma. She has been very jumpy to the touch but is improving. As a mother, I feel like I have failed her. I have one job, and that is to protect her at any cost and I didn't. I still can't.
I am at the hands of CDS. My daughter's well being is at the hands of CDS. If they say "No", she is the one that suffers the consequences. When you have a child with a terminal illness, you expect to fight and you expect it to be very stressful. You do not realize that most of the fight is to get what your child needs to have a comfortable, safe, stress free environment Unless you can afford to pay out thousands and thousands of dollars on equipment, you get the life CDS says you can have.
Saturday, 24 November 2012
Update
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
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