Memories

The Facebook memories option was a great addition to the site. I love seeing what happened on years prior. Reminders of life and where we've come from. This morning shows me photos of where we were two years ago. Two years ago we were still in for our longest hospital stay with Layla. We went in with her, honestly unsure of if we'd come out with her. It was some of the scariest, hardest times of my life. Standing tall and keeping my emotions generally inside, prevented me from breaking down. There were many tears but there could have been so many more. I had to power through that time, to be the voice for this child that had no voice. I remember being scared to ask for help, scared to let others in to what was going on. I kept hidden the reality out of fear that as soon as I spoke it, I somehow gave it power and there was no way she could get "better". There was a fear that others didn't really care because they all had their own worlds. Which is true in a way, and completely understandable. But I have slowly learned and am quick to admit that I am completely not able to do this on my own.. I need help. There are others who have come into our lives that are able to take on some of the complexity that is our life and I am so incredibly thankful for them. 

Here we are two years later, still with our little girl. She's so much happier and healthier than that point. I am forever grateful to every specialist, doctor, nurse, therapist that has worked with her and continues to. Two years ago we were told our daughter DIDN'T have SMA (A horrific disease which pretty much guaranteed she wouldn't live to see her second birthday.) But they weren't sure what she had, and that they could give a much better outcome. Some of the goals of that month long hospital stay were to get Layla nourished, and to confirm a diagnosis. She had been diagnosed with "Failure to thrive" as she was slowly wasting away, unable to keep down enough food to continue much longer. Countless tests were preformed but unfortunately we left without an answer. Thankfully we left with a new feeding tube which was an absolute necessity to getting some energy and weight back into our girl. 

After two years of continued searching for a diagnosis with no luck we are heading down to the States in just a couple days. Hard to believe this is where we are from where we came. I couldn't have guessed it would take so long to get more answers. Somewhere along my journey I taught myself to not be excited about things. I keep my expectations low so that there is no where to go but up. It's not healthy at all but that's just where I'm at. There's a chance we'll come home with a diagnosis but I need to not expect one so that I won't be as disappointed. Opening up about our world is humbling and scary. But healthy. Helps me not go into a world of isolation, which could be so easy.  

Bless her. June 2015

Two weeks out!

This morning I received all the information regarding out visit to the Undiagnosed Disease Network. Flights, accommodations, transportation and the tentative plan of events. It's strange to feel that this is within my grasp. There is this turning, sick feeling in my stomach- mostly nerves. What will come of this journey? I can't believe the time has finally come.
We are booked to travel on July 1st to July 8th. We have the full Sunday free which is great to be able to relax a bit before the busy week begins. Hoping to take Layla on a bit of an adventure. We need some play within all the seriousness of this week to come.
The flying will be a bit nerve-racking because we were unable to get the seat behind Layla blocked so that her seat could be reclined. In a carseat with her neck collar should be enough support with us beside her to hold her head up for the take off and landing. Then we can recline it for her comfort and breathing or just take her out of the seat and have her lay across out laps. We're hoping to have kind gate agents and flight attendants who will make this all a breeze, allowing extra time and support. I did a trial of her in the carseat upright in the car and I'm feeling somewhat confident that we can make it work. She's so much bigger than the last time she was in it that it's more supportive than it used to be. I considered fighting for more support while flying but with the trip coming so fast I can't risk having to reschedule the whole thing. We will just have to make it work! And I am confident we will.
My phone holds the list of all of the things we need to travel. I have a feeling we might have overweight baggage with all of the formula, meds and supplies. Trying to keep the non-necessities at a minimal.
I wish that there wasn't a lot going on before leaving but of course it's packed full. I think 9 appointments in the next two weeks before going. Sheesh. Thankfully only 3 trips to Vancouver and the rest are pretty local. Ready, set, go!

1 month to go!

With one month to go until the diagnostic trip to the States for the Undiagnosed Disease Network, it feels like there's a lot to sort out. We are so excited but there are still a lot of questions. How do we fly on an airplane with Layla now that she's over 2 and has to have her own seat? I have spent years working in airlines and have seen many people travel that required wheelchair assistance but I have never seen someone with no neck control. My best thought so far is bringing a carseat on board and then having the seat reclined and her neck collar on. Seems easy enough but I know that if they do this, they have to block the seat behind Layla and they will be unable to make that money, does that require paying for an extra seat? I will be calling the airline next week to try and getting everything organized to the best of my ability. Plus, I will make sure to have multiple doctors notes for the special requirements with medications, feeding supplies and seating.
We also need to sort out a rental car. It will have to be big enough to fit her wheelchair in the back which adds to the cost. But I figure since we don't have to pay for our flights nor accommodations we can splurge a bit on the vehicle and get an SUV or something with a large trunk space.
A woman I've been speaking to, through email, has been sharing her recent experience taking her daughter to the same diagnostic testing. It's nice to get an idea of what the week may look like for us. She was very happy that they went and for the information they discovered. Her daughter is required to go back for a second trip- which I guess is something we should prepare for.  The visit sounds incredibly busy. Every day they were at the clinic/hospital from 7am to 5pm and it was jammed with appointments and tests. Struggling to find time to even eat some days. I'll be thankful for the car rental to get out of there in the evenings, find a nice patio to have dinner on and debrief after the long days.
In other news, we were recently approved for extra home nursing hours! This has given so far an extra shift of respite a week and I think we may even get another once I train a new nurse. It came at the perfect timing with a lot of things going on. I was so scared they were going to cut back on the hours because of Layla sleeping more than she used to and being a lot happier. I am reminded of when a hospice doctor told me that as Layla ages and the gap between her and typical kids of her age broadens, you should see more support. This is why it's hard to get help for infants and younger babies because even typical ones have higher needs. Having the nurses now seeing our day to day lives and advocate to their manager for us was a huge help. Plus with seizures and suction added since the last assessment, it shows the need.  
Trying to stay strong, to rise above focusing on how different my parenting role is than the majority can be exhausting. It hits me every so often with these moments where the weight of the emotional, mental and physical requirements seem too much. I'm struck with a grief of what I had hoped being a mother would be, and what my child would become. Seeing other children do seemingly simple things with ease brings a prick of pain to my heart.
So for the sake of keeping things on a positive note let me close with a celebration of something new Layla CAN do. She has been appropriately responding to peek-a-boo. And it's pretty darn cute. We will lift her arm up over her eyes and repeat in an obnoxious voice "Where's Layla?" She will smile and verrryy slowly slide her arm down her face and when we exclaim "There she is!" her legs will kick and she'll let out her big, squeal-y, belly laugh. It's like she's just so proud of herself. And we ARE of her. It truly is amazing to watch this girl flourish. To see a personality come out and reactions to the familiar makes it worth it. I truly love her with all my heart, and more.

Layla attempting to eat my face.