I remember being told when Ali was about 3 months old that she’d always be low functioning and miserable. Today, Ali graduated from Kindergarten and she won a Sunshine award!

Ali, who has been through more this year then a lot of us ever go through won an award for always being positive and cheerful and for helping to enhance school moral and encourage positivity. I have never been prouder of Ali then I’ve been this year. Last summer, Ali went through some really awful testing. It had to do with her hypoglycemia and as her mom, it hurt me to watch. She started daily injections in September and immediately began to experience symptoms of a tethered spinal cord. She went through testing for the cord issue and had a test that in my opinion is probably the most awful medical test she will ever have. She had surgery on her spinal cord, went through a recovery and then needed to get 12 Botox injections in her leg. She’s now in the midst of serial casting. All that in less than a year and on top of her regular echocardiograms, ECGs, ultrasounds, blood work and medical appointments. We’ve also required more of her this year then ever before in both therapy and at school.

She’s had a really busy and difficult year. I wouldn’t blame her if she was miserable and worn down, after all I feel like we’ve all been though a battle this year and I’m ready for all these issues to be resolved. She faces challenges that no one should ever have to face and she’s starting to understand that most kids don’t have to do all the things she does and yet, she won the Sunshine Award! She smiles through everything.  She never gives up.   Even when the tests are scary and she cries and asks us to stop them, she still leaves the room smiling. She is amazing and I can’t tell you how proud I am of her. She has so much strength in that little body and she is so brave.  While she’s dealing with lots of challenges, she is constantly worrying about others and how they’re doing.  She has grown this year into a thoughtful, intelligent and caring little girl.   I am so proud to say that I’m that happy little girl’s mom and I’m proud of the impact she has on the people around her. This kid was never supposed to be happy and today, she got a Sunshine Award!

I struggle a lot.  I sort of live my life wondering (and worrying) about what comes next.  There are times when I feel so worn out from it all that I look at my calendar of appointments, activities and work and I want to run and hide.  I panic and I start to freak out and think we can’t possibly do it all.   There is one person in this world that shares all of that with me and that’s Jason and I really couldn’t do this without him.  He’s the strength in this family, he keeps us going when I’m ready to crawl into bed and call it quits.   He keeps us afloat when I’m planning to abandon ship!  Jason is the one that reminds me that we always get through it – together we get through everything.  I will openly admit (and I think that Jason would too) that we handle things very differently.  While I’m running around having an all out panic attack, he’s cool as a cucumber but I know that doesn’t mean that he doesn’t feel the stress every bit as much as I do and I truly admire his ability to let things go because I can’t seem to manage that.  As maddening as it is at times I appreciate the calm way in which he deals with our lives.   Jason and I are a team and I’m really lucky to have him as my partner in all this craziness.   He’s just a great guy.  He’s smart, he works his butt off for our family and he loves us and we know that no matter what he’ll always be there.   Jason alone deserves every bit of the credit for the person he is.  He is a great father and husband because he makes the choice to be, not everyone makes that choice but I’m thankful that he does.  Today is Jason’s birthday and I want to thank him for all that he does for our family.   I hope he knows how much we love him – kids, wife and dogs.  Happy Birthday!

I’m going to post something today that may not seem like it has that much to do with Ali and it’s probably a little more political and opinion based then you may wish to be reading from me but something’s been bugging me and I’m going to get off my chest. If you stop reading now, I won’t be offended.

I saw a letter last week that was sent home from a school in our town about a coin drive for Syrian refugees that was being organized by a group of children. I thought it was wonderful that a group of children were organizing a coin drive for people in need. I looked for some change and stuck it in Madi’s backpack so that she could participate. What better way to teach her about compassion and to help remind her how lucky she is to be safe then to give her some change to contribute? She sees the images on TV during news broadcasts, we all do. Why not take the opportunity to teach our children that we should do what we can to help, even if just in a small way? So I started talking to her about it and she told me that some of her friend’s parents think that “Syrian Refugees” (not her wording but that’s what she meant) should just go home. These people fled their country, most of them by foot because they had to choose between being slaughtered and running for their lives. They lived in fear that their homes would be blown up and that their children would be murdered. They were doctors, lawyers, teachers and engineers. There were young families, seniors and people with disabilities. They weren’t that much different then us. They were hungry, afraid and more desperate than I imagine most of us have ever been and yet, people are telling their children that they should just go home? I’ve read all over social media, amongst rumours about the refugee program in Canada (most of which are false if you actually do the research) that people feel like we need to help our veterans, our homeless, the disabled and the unemployed people in our country before helping people from another country. That’s all great, let’s help our own but please don’t use people like Ali as an excuse not to help people from other countries. We need to remember that the Syrian refugees are not coming here because they wanted to. They left their homes behind. They left all their possessions and they were separated from their families. They literally ran for their lives with the clothes on their backs. To me that doesn’t compare to an oilfield worker who lost his job or a senior who is living off a small pension. Why?  Because in Canada, we don’t have bombs falling around us and children running in the streets with machine guns. I don’t understand how as a society it is suddenly okay to be so openly prejudice against a group of people who desperately need our help. How is it okay to encourage people to turn their backs on them? I see it all over social media, all the time, posts about refugees (and even immigrants) and about why they shouldn’t be here, why we shouldn’t help them. So my question to the people who think it’s okay to speak out against this group of people who can longer help themselves is this. What happens if we ever need help? How would you feel if you had to leave your home in the dark of night because you knew that in morning it would be a pile of rubble?  What would you do if your neighbour aimed a gun at you and tried to kill you? What would make you throw your child into a dingy and float across an ocean? What would you do if when you were finally safe, nobody would help you? For followers of this page, what would happen to my family and my daughter in a place like Syria? I think about that a lot when I see the news, what happened to all the children like Ali? That’s why this is on my blog and probably why it affects me the way it does. I think we need to count our blessings and if we have to share them because we just so happen to have been born in one of the safest places in the world then that’s fine with me. If it’s not fine with you then I think you really need to do some thinking.

If it weren’t for Facebook, I think February 22nd might have passed by this year without me even thinking about what day it was. I wonder if that’s a sign of healing or just a sign that we’ve had way too much going on lately? Facebook, as it so often does, reminded me bright and early on February 22nd that it was the 6 year anniversary of the first time we’d ever heard the words “Costello Syndrome”. Thinking about that day still takes my breath away. It’s not because the words “Costello Syndrome” fill me with sadness anymore (although I still hate them some days).  It’s  just because of the memory of how I felt that day and how it feels to be totally crushed like that. Although  I’m sometimes not impressed by the things that Facebook reminds me of, I really value it for the connections that it provides for families like ours. I love it for the constant contact that it provides to other people going through the same struggles that we are and for the support that comes along with that. I love that it gives us a way to raise awareness and to stay somewhat connected even when life gets so hectic that we don’t have time to call or text. Yes,  there is good and bad when it comes to Facebook but it sure likes to remind me of things that I may not want to be reminded of! : )

Anyways, as I was saying, we’ve had a lot going on with Ali. It seems like when we resolve one thing and have the opportunity to breathe a little, something else comes up. I guess we should be expecting it by now! If you remember, Ali really struggled with blood sugar for about a year. We felt like she was unsafe and probably not thriving the way she could be. She went through a lot of testing and eventually we decided to treat her hypoglycemia with Growth Hormone. We weren’t really all that comfortable treating a child with a high relative cancer risk with a medication that causes cell proliferation but we weighed the risks versus the gains and we decided that to keep her safe we needed to try it. Her blood sugar has been much, much better since we decided to give her the hormones and despite having to get a needle every night, she seems to have adjusted really quickly. We noticed some changes in Ali’s feet and legs after a couple of months on the hormone medication. She started to struggle to walk and one of her ankles started to turn under. She also had a couple of little toilet accidents at school which was really out of character for her.  We casted her for ankle and foot orthotics and took her to her Orthopedic Surgeon because we thought she had an achilles issue (as is common in children with Costello Syndrome).   As soon as she had a chance to assess Ali, the surgeon realized that Ali’s ankle issue was actually neurologic in origin. She sent us to our Neurosurgeon, he ordered some testing and an MRI and we waited to find out what would happen. Now, most of you know from reading my blog and from being around me in real life that waiting is not my strong suit. Uncertainty drives me nuts. The testing was inconclusive so our Neurosurgeon and Orthopedic Surgeon took the time to contact multiple experts on Costello Syndrome, I think they even sent out a power point of her MRI images. In the end, it was determined that to avoid further damage (including permanent loss of bladder/bowel control), Ali would have spinal cord surgery. Very quickly we had a surgery date, we bubble wrapped Ali to keep her healthy and started to prepare for surgery. On February 16th, Ali had surgery on her spinal cord in the hopes of finding and releasing a tethered cord. The neurosurgeon found that her spinal cord was indeed very tight, much tighter than it appeared to be on the MRI and that despite it not being visibly tethered on imaging, it was actually tethered in two places.  Because her cord was tethered it wasn’t able to stretch and move as she grew and it was causing nerve damage.  It was tethered in an area that would probably cause the ankle issues and also in an area that directly relates to bladder/bowel control.  It was causing bladder issues that were worse than what we were actually seeing. We probably greatly accelerated this degeneration by putting her on growth hormone (she grew 6 cmin 5 months), her spinal cord wasn’t mobile enough to accommodate the growth but it has always been tethered so this probably would have happened eventually regardless. Now that her spinal cord has been released and is actually mobile, we need to fix the damage and the question is how do we do that? Her ankle is quite bad. We may need to do ankle surgery in the next year or so to repair it but we are using AFOs right now and are hoping that we make some headway. Thankfully, we caught it before the bladder issues appeared to be that bad so our hope is that over the next two to three months, her bladder function will improved to what we thought it was anyways. She had also started walking around with her hand on her tailbone (apparently she was tethered right there) and it was most likely an indication of discomfort. She’s not doing that anymore. We got very lucky with this. The system worked exactly as it should and we couldn’t be more satisfied with the outcome. Sometimes the system really does work perfectly! Now, we go back to concentrating on Ali’s chewing and her open bite which was what were working on before we got side tracked by her spinal cord. Hopefully, we can get that dealt with before the next thing pops up! Wish me luck keeping Ali calm and occupied at home for another couple of weeks!!!

Note: for other CS Families.   Please contact me directly if you want to discuss the result of Ali’s MRIs and other testing and why we went with surgery despite inconclusive results.