When I found out about Ali’s pretty substantial bite issues, I was very sad and very discouraged and to be honest, I cried pretty much all the way home from the appointment (2 hours).  I had to work very hard not to cry when I was talking to Ali’s aide at school about her bite and about the fact that she may be swallowing whole, what I thought she was learning to chew.  When discussing it with her Speech Language Pathologist, I had to repeat to myself, “Don’t cry, don’t cry!” over and over again.  Sometimes it’s hard to absorb this new information without feeling totally and completely discouraged.

But now that I’ve had a few days to think about it, I realize that it’s only her bite.  It’s really unfortunate that after working for five years on feeding, it feels like we’ve taken a step back.  But, it’s only a step back and in the grand scheme of things, Ali never learning to chew wouldn’t be that big of deal.  Ali has Costello Syndrome.  I am in contact every day with parents who have children just like Ali who are struggling, not just to chew but to survive.  I communicate by private message with parents with children that are fighting cancer, I have followed blogs and communicated by email with parents as their children have lost their fights.  I watch on Facebook as babies fight to survive heart failure and the entire Costello Syndrome family rallies around them and prays for their survival.  Daily, I hear of stories of other children with Costello Syndrome undergoing biopsies, having invasive surgeries or getting very serious diagnoses.   It’s not like I haven’t been there.  I too have watched my child fight for her life.  I sat and kept watch over Ali and wondered if it was the end.  We almost lost her before she had a chance to start living.  She survived but unfortunately, the reality is that a lot of children with Costello Syndrome don’t live to be 5 like Ali.   So yes, I am sad that Ali’s bite is such an issue.  I am sad that speech is going to be more difficult for her and that in the future we may need to make some difficult decisions in regards to her bite and that’s okay.  But it could be worse.

Ali is a happy, healthy little girl and regardless of our daily struggles, she’s here.  I am so thankful that she’s healthy right now and that she’s thriving.  I may complain about the strict schedule we keep because of her hypoglycemia and I may seem really discouraged because she’s not growing.  I worry all the time that she may get sick.  I make no secret of the fact that I get frustrated with her visual motor issues and her neurological flare ups.   I might even cry in the shower because my vision of Ali eating and talking just like all the other kids was just smashed to tiny little pieces but I know in my heart that I’m one of the lucky ones.   I need to always remember that.

Our family is used to experiencing many up and downs.  When you have a child in your family with special needs you get used to hearing things about them that break your heart then dusting yourself off and continuing on.  Thankfully, Ali seems to have a knack for defying the odds. She has Costello Syndrome, it doesn’t ever make sense but what we can depend on is that she typically does things that she’s not supposed to be able to do.

It started when Ali was very, very young, even before the Costello Syndrome diagnosis and continues to this day.

When Ali was 9 months old, I was crushed when I found out that she had underdeveloped optic nerves.  I was told that what you’re born with is what you keep.  Months later, Ali’s optic nerves started to change and now, they’re much healthier.  We talked about permanent blindness with her Opthalmologist and just a few years later, although still visually impaired, Ali has functional vision.

When Ali was one, I had a discussion with her Cardiologist about the significant progression of her Hypertrophic Cardiomyopathy, I believe we even talked about transplants.  The doctor was very concerned and again, I was extremely worried.  Six months later, the cardiomyopathy had stabilized and there has been no more progression.  Again Ali defied the odds.

There are so many examples of how Ali continually manages to prove that she doesn’t follow any rules.  Today, I need to remember that.

Yesterday, I was told that due to severe bite issues, it would be almost impossible for Ali to learn to bite and chew.  She has an open bite, she has no biting force because her top teeth and her bottom teeth don’t come into contact when she chews.  This bite issue will also have a significant impact on her speech.  It can’t be repaired, it’s just too complex, there are too many things going on.  So yet again, I’m told that Ali won’t do something.  We’ve just had her g-tube removed, she’s been making incredible progress in feeding and speech and suddenly after 5 years of working toward these goals, we’re told that she can’t do it.

Unfortunately, this is the life we live.  We take many steps forward and then we take steps back.  We feel the sting of the news, we dust ourselves off and we continue on.  Then, Ali does something to amaze us and she proves everyone wrong.  I think it’s really important to never underestimate the power of a determined little child with a huge heart.  We never count Ali out even when the news is very discouraging because in the past, regardless of whether it made sense or not, Ali has always managed to prove that in her own time, she’ll defy the odds.

So now, what do we do?  We continue on.  We work on chewing, biting and speech.  We stand beside her and work patiently towards our goals knowing that even though the news wasn’t good, that nothing is impossible for Ali.  We add another session of chewing and biting to our daily therapy, work just a little bit harder on speech and we have faith that once again  Ali will prove her doctors wrong. She always proves them wrong.

On December 3^rd, Ali had her feeding tube removed.  I haven’t posted anything because I wanted to say something to do it justice.  I wasn’t sure how to express how monumental this was for Ali and for our family.  I’ve given up, I don’t think words can do Ali justice this time.  There are no words to express how proud we are of her.  Not just for having her feeding tube removed but for travelling a road that most people never have to travel, for overcoming obstacles that she should never have had to overcome and for doing it all with a smile.

I think it must have been a little scary for Ali to hear that we were planning to remove her feeding tube.  To a child like Ali, a feeding tube is a part of her.  It’s scary to lose something that you depended on every day of your life.  Ali also understood how exciting and special it was and how proud she should be of her herself for overcoming so many obstacles and being at the point where she no longer needed to be tube fed.

So on December 3^rd, 2014, Ali woke up from surgery for the first time ever without a feeding tube of some sort.  She woke up smiling in true Ali style and hasn’t looked back.

I remember the day we put the G-tube in.  There were so many mixed emotions, just like there are now.  I felt like we failed her that day but I knew that we were saving her life.  Today I look back and I know without a doubt that we did the right thing.  I just can’t believe the journey is over.  It was a wild, scary, heartbreaking, rewarding ride.  We’ve truly never been prouder of Ali.

With the prospect of Ali’s G-tube coming out permanently, I’ve been taking some time to reminisce.  I find myself often shaking my head when I think about her “tubie” and the journey it’s taken us on!  More often than not, I find myself laughing at the steep learning curve and all the crazy moments that occur when you introduce a feeding tube into an unsuspecting family.  I’ve done so many crazy things in the name of getting Ali fed!

• I’ve called and emailed stores on pretty much every continent looking for syringes to feed baby squirrels (I’m not going to explain but I know that some of you are laughing right now). The vast majority of the people I spoke to thought I was nuts.

• I have inserted a feeding tube while eating a Mc Chicken with Ali sitting in an infant seat on a table in McDonald’s. I really thought nothing of it until I looked up and saw all the shocked faces of the people around me.

• I have tried to unclog a clot in a g-tube only to cause a massive explosion and cover absolutely everything in the room/vehicle with food. I’ve done this multiple times and Ali always thinks it’s funny!  Her favourite is watching it drip from my nose!

• I have left Ali’s port open and had the entire contents of her stomach drain down my leg as I was carrying her. When you’ve got things to do, you have things to do so I just continued on with my day and threw my pants in the hamper when I got home.

• I have used a syringe to catch vomit to avoid getting puked on in public and then put it in my purse. I found it the next morning.

• I have woken up bleary eyed from a long night and taken a sip of coffee only to realize that it was predigested tube feeding formula.

• I am well aware that I can vent my child’s G-tube in a way that makes it sound like a fart and yes, I think it’s funny.

• I have caught a massive mucous ball ejected from my daughter in my hands while grocery shopping and wiped it on my pants and then worn the pants the next day because they were still “pretty much” clean.

• I have run all around a drug store to find my husband in order to exclaim excitedly, “Look at the action on this syringe” when the pharmacist has let me sample a new brand of 10 ml syringes.

• My kids are the ones that show up to the squirt gun fight with massive syringes and they really know how to handle those babies!  I also use syringes to water plants, baste turkeys, measure for baking and to make popsicles.