10 Things I learned From Reading My Blog.

I’ve just finished copying most of my posts from my original blog to this one.   I’ve really enjoyed looking back and seeing how far we’ve all come.

10 Things I learned From Reading My Blog.

10) You can’t expect Ali to follow the rules.  So many times along this journey, I was given bad news and devastated by it only to have Ali defy the odds and surprise us all.  She’s taught me a very valuable lesson about hope.  There is always hope that things will turn around and when it comes to Ali, she has a way of surprising everyone.   As the parent of a child with a rare syndrome, it’s so important to always hold on to that hope and Ali is always reminding me to do that.

9) Sometimes it just takes time.  It can be really hard for me to just relax and not get impatient.  I think from reading the blog posts I realized that sometimes I get too anxious about things when all Ali really needs is time.  It doesn’t help to push if she’s not ready.  There were times when I pushed for something and then stepped back only to have her finally meet the goal.  Time is a wondrous thing.  I need to keep in mind that in her own time, Ali often meets her milestones.  In the grand scheme of things it doesn’t matter how quickly she does that. I need to relax and have faith that she will get there.

8) We still dream “big” but “big” is different and that’s fine.  We were given a fairly negative outlook for Ali when we got her diagnosis but we still had dreams for her.  Admittedly, we had to adjust what “dream big” means but I think we still aim high.   Just like we do for Madi, we set goals for Ali and I think we expect her to achieve those goals.  Clearly, some of our goals for Ali are different then they’d be if she was typical.  The dreams of her being a doctor or having a family are gone but that’s okay.  We dream of independence for Ali and we work towards that even now.  It doesn’t count for any less than the dreams that we have for Madi.  It’s totally and completely okay to let go of some dreams in favour of more realistic ones but you always need to have dreams for your child.

7) I need to stop using “then” and “than” interchangeably.  After all, I have been formally educated. : )

6)  I need to live more for now.  Can you tell from my posts that I’m always thinking about what comes next?  I’m constantly thinking about blood glucose levels, worrying about the next cancer screen or stressing out because Cardiology is a few months behind. There’s always something.  Those things keep me up at night but maybe they shouldn’t.  Maybe, if I learned to live for now, I could enjoy my time with both of my girls more without all the constant worrying about Ali’s health.  Maybe I’d be a better mom to both of them if I could live in the moment and just hope for the best in the future rather than trying to be prepared for the worst?  I truly believe that they’d both benefit from a mom that didn’t always have something on her mind and I truly wish I could find a way to be more in the moment.

5) I often feel lost.  That came through loud and clear as I was reading my blog posts.  I feel like I tried to hide it behind positive thoughts and encouraging news but I’ve been lost for a long time.  I hate uncertainty and not knowing what comes next.  Those two things leave me feeling totally and completely lost.  I need to be in control to feel comfortable and I often feel like I’m pretty much just along for the ride when it comes to Ali.  I can sugar coat all I want (and I think I did) but it doesn’t change the uncertainty of Ali’s path and it doesn’t make me any less lost on this journey.  There were so many posts where it felt to me like there was a big flashing sign saying, “Help Me, I’m totally lost.” and thankfully, in those times, so many of you reached out with kind words of support or guidance to help get me back on the correct path.

4) Words make a huge difference.  Words can change everything, they can help you find strength that you didn’t know you had.  There were so many times over the past four and a half years that someone posted a comment on my blog that totally changed my outlook that day.  I would begin the day feeling like no one understood or wondering what to do next and someone would post something in the comments section that totally put me back on the right path.  There are so many people who read Ali’s blog that are in the position to give me guidance and I hope that if you see me struggling that you never hesitate to direct me to where I need to be.

3) It’s really important to take joy in the small things. What a difficult journey this would be if we didn’t take joy in all the small steps that Ali makes.  Sometimes, things are sweeter when you really understand how difficult they were to achieve.  When you watch your daughter fight for every single milestone, the feeling when it’s achieved is incredible and I hope that everyone in the world gets to experience the joy and pride that we experience every time Ali eats, speaks or dances around the room to one of her favourite songs.  I hope that people who take their children’s achievements for granted someday have the opportunity to feel what we feel when Ali walks across a balance beam or hangs on the rings because we couldn’t be prouder if she won the Olympics.  I think I need to remember this when it comes to Madi.  Madi’s “small things” are just as important as Ali’s and I think she needs to hear more often that we’re proud of her too.

2) There is a lot of good in the world.  The amount of people who truly care about Ali is absolutely astonishing.  I am incredibly humbled and blown away by how many people have given of themselves to help and support our family.  I always feel like there’s a village behind Ali and like there are so many people cheering her on and finding joy in her success.  I feel like she’s given a lot to the world and in return, it’s given a lot to her.

1) Never underestimate a tiny little child with a huge heart.  Ali is amazing.  She finds so much joy in her life.  She conquers her goals with such determination and she does it all while smiling and making people love her.  She has such an important purpose in this world.  She has taught us so many valuable lessons and while we’ve been guiding her along and doing our best to help her achieve her goals, she’s been showing us what life’s all about.


It’s All Dietary??

Since I’m sure some of you are wondering, I’m going to update on what’s been going on with Ali’s blood glucose issue.  The Endocrinologist has decided that Ali’s blood sugar issues are essentially dietary (“dumping” is common in tube fed kids).  He has ruled out endocrine related issues.  How did he do this?  He made this decisions simply by looking at a journal of her blood sugar levels over 4 days.  Because her blood sugar level drops substantially after having simple carbs, he feels that it’s all dietary.  He thinks she’s dumping. That can be common in kids that are tube fed (which she’s not anymore).  If Ali eats cereal, a piece of fruit and a yogurt for breakfast, her blood sugar drops into a very low range 2 hours later but if we only feed foods with a low glycemic index, her blood sugar remains higher (but still drops).  Hence, in his opinion, Ali’s problem is dietary and the solution is to only feed her low GI foods.  So, I guess that makes it my fault.  He recommended several dietary changes which I am following.  Her blood sugar was better today but still relatively low.  I took away her favourite yogurt and replaced it with plain greek yogurt.  I stopped giving her the cereal that she likes in favour of Oatmeal that she gags on.  I didn’t give her raspberries today because a banana has a lower Glycemic Index.  I have no doubt that I can control the hypoglycemia with food to some extent and I’ve always know that but it’s simply putting a bandaid on the problem.  It doesn’t change the underlying issue.  That’s what no one gets.  It’s not only about the hypoglycemia, it’s about all the other things that an endocrine related issue could cause or be causing.  It’s about helping Ali to feel really good.  For now, I’m just going to follow the diet and only feed her foods with a low glycemic index.  That will to some extent make her feel better and that’s ultimately my goal.  I’m really sad that I haven’t been able to make anyone understand what this is about.   I feel very alone in this and that’s hard.  It’s making me doubt myself and I hate that.

Well That Didn’t Go Well. Originally Posted September 9, 2014

We had an experience yesterday that was so frustrating, it made me want to scream! We have had a concern for quite a while that Ali was having episodes of severe hypoglycemia. We discussed it with her pediatrician and with a home glucometer confirmed two symptomatic episodes of substantial hypoglycemia. During one of those episodes, her blood sugar fell into a range that is considered to be dangerous (I documented both episodes in just two days). Our pediatrician agreed that there was probably a problem and referred us to endocrine. We had our appointment yesterday.

It started off with a resident coming in to talk with us. She had obviously done her reading on Costello Syndrome but more so on the physical characteristics of the syndrome then the medical side. She knew all about Ali’s hyper flexible joints, extra skin and short stature but knew nothing of the very well known link between Costello Syndrome and issues with hypoglycemia and the fairly well document causes of the hypoglycemia. She asked a million questions and left the room.

Then the endocrinologist came in and to put it bluntly, he had decided that we were full of **** before even entering the room. He pulled his chair right up to me (and turned away from Jason) and proceeded to treat me like an idiot. He looked at my 27 pound, 83 cm four and a half year old (with a syndrome that is documented to cause hormonal issues) and told me that even with the symptoms of hypoglycemia and the two low readings, he had very little cause for concern. He totally ignored her constant low energy levels, her total and complete inability to concentrate for more than a few minutes and her low muscle tone and didn’t even bother to order any blood work (even after we tried to convince him). He even managed to blame it on me. You see, the second episode of hypoglycemia that Ali experienced had scared me so much that I started feeding her constantly. If she went more than a couple of hours without a snack, I made her eat. I thought that trying to avoid having my child in a dangerous situation was the right thing to do and when by chance it did happen to look like she had low sugar levels, I fed her to fix it instead of taking a blood sample to document it. I did this because I had no idea what the endocrinologist would be looking for in his testing and I wanted to keep her safe until we had some guidance. Well, jokes on me, I screwed up the data and thanks to my efforts, the endocrinologist has little cause for concern. Rather than being helpful, he suggested that I stop keeping her safe in favour of documenting her blood sugar levels and so I did and in less than 24 hours, she’s already had a dangerous low (totally asymptomatic).
I’m pretty sure that he and his resident had decided that it was all about making her taller, which is pretty ridiculous considering that I agonized about even going to that appointment in case they suggested Growth Hormone therapy because with her cancer risks it terrifies me.

So now, we’re left with a clear problem. Our daughter’s blood sugar levels fall to level that makes me feel really uncomfortable and the person that can help us sort it out is totally underwhelmed by the evidence at hand. I can feed her to avoid hypoglycemia but that doesn’t cure the underlying problem OR I can hold off on the snacks a bit and let her crash so that I can document the hypoglycemia for this doctor and hopefully, eventually get some testing. I’m so frustrated and stressed out about this and beyond documenting her lows for a few days and then faxing the endocrinologist (along with a big pile of articles on Costello Syndrome) I’m not sure how to get to the bottom of what’s going on. I’m just worried about happens if I hold off on a snack and then can’t get her blood sugar to go back up.

I’m angry that we got treated this way. I usually feel like Jason and I are an active part of her medical care and like we work as a team with the medical professionals. This guy treated us that we had no business being there and that’s not fair. We work hard to avoid extra appointments and interventions and if he’d bothered to listen to us, he may have gotten a better understanding of what kind of parents we are.

Thanks Gram. Originally Posted August 18, 2014

On Wednesday May 13 my Grandma passed away. How sad it is to look back on all the good times we had with her and to know that she’s gone. I want to thank her (because I know that she’s still looking out for us) for loving us all so much and for being such a source of strength to our family.


When Ali was born, Grandma was always a source of kind words when I needed them and she taught me a very valuable lesson about the power of positive thinking and about the good in the world when along with my Grandfather they rallied their entire church to pray for Ali over and over again. Grandma never offered anything but words of support and I remember her telling me many times how proud she was of me. My grandma used to beam when she saw my daughters. She loved them for exactly who they were and I loved watching them interact with her.

I want to thank my grandma for tomatoes the size of basketballs, for beautiful flowers, for more oreos than anyone should ever eat and for slipping me all those twenty dollar bills over the years. I want to thank her for always laughing when we made fun of her height (“Little Granny Short Legs”), for welcoming me and my friends into her home many times and for picking me up at university when I was sick and nursing me back to health with a never ending stream of ginger ale and ice cream! I want her to know that Madi will never forget her goldfinches and that Ali will always carry her unconditional love and acceptance with her.

I believe that those that we love never really leave us. Now, we have some extra guidance from above!