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

Just like Christmas

Today was the best day ever.  Emma's team came to the house today to try and find a solution to the bath chair she is outgrowing.  Not only were they able to fix it so it will last her a lot longer, but they also surprised me with her new alternative seating chair/stroller!!  This will help her to have an alternative place to sit throughout the day and if we want to go outside, it wheels right outdoors.  It will be perfect for poolside, walks and in the house.  Today, we officially have everything in perfect working order!  After a very long time, she has zero equipment issues.  I could not be happier and I think Emma is just as happy with the chair as I am.  She has not woke up since she was put in it this afternoon.

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.

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.