My daughters had ham and scalloped potatoes for supper last night.  They both did.

Feeding my daughters the same thing for supper is a novelty that I don’t think will ever wear off.  In most households, ham and scalloped potatoes don’t warrant Facebook posts (complete with photos) or blog entries but in mine it does.  Being able to feed both Madi and Ali the same meal is new to me and although there are still many days when Ali doesn’t eat what she’s given, last night was a success!  Ali doesn’t chew so there are some textures that are difficult for her and getting her to eat meat is obviously tricky.  We often have to stick to foods that she’s comfortable with but we’re always looking to expand her variety.  I gave her the ham and potatoes in itty bitty little cubes.  It took me longer to cut it than it took for Ali to eat it.  She used her fork a bit and she swallowed them whole.  We’ll work on chewing, I promise!

I have to admit that Madi wasn’t overly excited about this successful meal.  She hates ham and scalloped potatoes.  I don’t think she appreciated being used as a model for her sister in this case.  She started off the meal by sitting at the table, arms crossed, saying, “I’m telling you right now, I’m not eating any fat!”.  I tried hard to keep a straight face.  She rarely complains when she’s asked to model for her sister but she’s quite obviously not a fan of ham and I guess that’s where she draws the line.  Modelling or using a child’s desire to eat socially is a key component in teaching a tube fed child to eat.  So, I let Madi know that once she showed her sister how much fun it is to eat ham, she could have a cookie. No, I am not above bribery and I needed Madi to eat happily! In the end, Ali ate two servings of ham and scalloped potatoes and Madi got her cookie after asking, “Is this fat?” many, many times.

Now, I have to fight the urge to serve ham and scalloped potatoes every night for supper (Madi will be relieved).  Thanksgiving is next week and I think ham might be a great alternative to turkey this year because it will be a good, solid reminder of the huge amount of progress that we can be thankful for.

Not to worry about Madi, I’m sure she’ll be happy to eat the ham when she finds out that we have pumpkin pie for dessert.  I’ll even give her extra whipped cream.

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.

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.