Limp

Aaron and I have made it a priority this year to each play a sport to get exercise, be social and do something for ourselves. It has been fantastic. Gives us each something to look forward to in the week. I didn't predict that it would actually make things harder. On Sunday during my game I got taken out by another player and sprained my ankle pretty bad. It's double the size and all black and blue. Unable to put any weight on it the last few days has make it so difficult to do anything. I'm hopping on one foot to get to and from the washroom and the fridge where my wonderful husband has had all of Layla's food bags and meds set up for me.
Thankfully I have nursing support set up for the mornings for 2 hours for the rest of the week.. our very last week of it, so that she can bring Layla down from her room upstairs to the living room, where we will stay the rest of the day. Praying I'll be able to at least start limping on the leg tomorrow to feel more useful and less lazy. We can't afford to have Aaron take any time off work so we have to make this work without him taking sick days. It's a great reminder for how important it is for me to be healthy for Layla. Also how much we need help.
Last week we had an assessment done to decide if we deserve regular nursing support. We had multiple professionals and non professions say that we deserve this support and should have it in place. So I had my hopes up. Of course the meeting was quite emotional, having to focus are the hardest parts of Layla and her medical/diagnosis/every day journey. Something I don't like to focus on too much. Right in the meeting the women told me that at this time she didn't believe we would qualify. It hit me hard. I started crying.. And I almost never cry in appointments and meetings. (I usually wait until I'm alone.) She felt bad. She said that she could 100% see that we do need help. But it is really hard to qualify for nursing support and she didn't want to get my hopes up. She promised she would call my social worker to see if she had any other ideas. Then yesterday she stopped by to give me a copy of the assessment and shared that she will be presenting our file tomorrow and that is when the decision will be made. I get the sense that she wanted to give us another opportunity to add to our case because she said "If you can think of any more reasons why Layla needs the support of a nurse vs a caregiver please email me by Tuesday so I can add it to the report."
Thankfully I have a nurse here today, who thought it was ridiculous that we wouldn't qualify, so I told her I need her help to come up with a few things. Reasons why her job is important. Fingers crossed we can come up with just the right words to convince these people.
The hard part is I don't want to have my hopes up, yet again, to only be crushed. Every week it seems there is a new roller coaster ride on this journey. It's hard to know where to put your energy and to fight and when to throw in the towel and say this door is closed.

Go Fund Me

We are trying to get some funds together to go towards the purchase of a wheelchair accessible van to get our sweet girl Layla out and about with ease. If you feel lead to give towards our cause we would be so very grateful. Please take a moment to watch the video and read our write up, then share this page to spread the word, if you feel so inclined. Thank you for all the love. For real.

https://www.gofundme.com/laylavan?ssid=773354427&pos=1

Mito-what?

After a recent appointment with Biochemical Diseases and Genetics I've been sitting with a heavy heart. Probably partially heavier because Aaron was away and I wasn't able to vent fully over the phone. The latest route they are wanting to go down for diagnosis is a possible mitochondrial disease. I wrote last about this mitochondrial cocktail that was prescribed. I had a lot of questions so we booked this appointment to get some of them answered.
Honestly, it felt a bit like a science class. There was even diagrams drawn. They explained to me cells and DNA genes and the first 25,000 that they looked through and found no notable abnormal genes. Then they moved outside the nucleus to the mitochondria. Mitochondria are responsible for the energy we need for every organ in our body. I guess there was something noted that at first they didn't believe could explain Layla but now they are second guessing. This mitochondria is passed on solely from the mother and not the father.
That in itself is a hard pill to swallow. Ugh.. now it's not both of us, it's just me.
The sad stat with mitochondrial Diseases is that they are passed down to children 100% of the time. Whether or not they show symptoms and the severity is another thing.
So now they're in the process of applying to get more funding to test blood work of Layla and myself.  If she has more abnormal mitochondria than me, that could explain why Layla is the way she is. If she has less than it would not be the explanation and we'll be back to the drawing board. By we I mean they.
The downside to the cocktail is that because it is high dose vitamins, and our lovely government will not fund any natural prescriptions, only unnatural ones, we have to pay out of pocket. Obviously if it'll help we will figure out the funds. But if it doesn't help we don't want to spend the money for nothing. So for now, we're going to order the perscription, trial it for 6 months and see what difference it makes.
Sometimes I have these out of body type experiences when I'm sitting with these specialist and talking about the medical side of things and just shake my head. I never thought in a million years I would know the things I know without signing up for med school. It's overwhelming at times to try and separate motherhood with medical motherhood. Reminding doctors that we're talking about my daughter here, not a lab rat. But while wanting to try anything and everything we can to keep Layla happy and healthy. I am forever changed.