Tag Archives: Mac Kids

Shiny New Ear Tubes

10 Apr

Ladybug is out of surgery and has a brand new pair of ear tubes. 

Although there is a lot of discrepancy regarding children actually needing ear tubes, Ladybug proved these past few months that for her, they are greatly needed. Since autumn when the first tube fell out, she’s had numerous ear infections, ruptured ear drums and a granuloma on the one tube that was left floating in the abyss.  

The surgery went well, no issues at all. We just have a very tired and sore little bug. 

Here’s a picture of Ladybug and Daddy-o snuggling before the surgery. 

  

Tags: ,

Healthy amidst an outbreak

1 Apr

From all our hospital stays over the years, it’s hard to believe we would be here while Ladybug is healthy.  

No IV’s beeping at all hours of the night, no surgeries, no pokes, no fevers. It’s a whole new world. 

I thought all of the above would make the stay easier but it really hasn’t. We’re fortunate enough to have a private room so that’s a HUGE bonus. However, shortly after Ladybug was admitted we discovered our ward has a big outbreak of the Norovirus. For those not familiar the norovirus causes vomiting, diarrhea, nausea, and stomach cramps. Babys and children with weakened immune systems are the most susceptible to catching it and getting very sick. It just so happens I have one of each smack dab in the middle of this germ infested place. 

After chatting with the docs we’ve agreed to cut this stay short and go home today or tomorrow. 

Now that I have two munchkins I was a bit worried about how I would handle both, while being cooped up in a little room. I am happy to report that I handled it just fine. Books, toys, and snacks kept my little man occupied (not to mention the constant admiration of the nurses) and Ladybug was for the most part content chilling, watching cartoons, and being doted on. 

   

 

We should get the final results of the EEG in a couple weeks. On the 10th Ladybug will be back in for new ear tubes, and then possibly back in for a stay at the end of the month to start the Ketogenic diet. 

Tags: , , , ,

5 and FABULOUS!

16 Dec

What a whirlwind of craziness, celebrations and anticipation these past couple of months have been.

On December 3, 2014 we celebrated Ladybugs 5th birthday. It’s truly amazing to see how far she has come in the past 5 years.

 

14744_356904950105_665770105_10068168_2745775_n

 

I am also 100% convinced that no doctor can ever predict her future.  Ladybug has been working with a fantastic Physiotherapist since last spring, and is beginning to move around independently in a gait trainer. Video to come once I can figure out how to remove the audio for privacy purposes.

The orthopedic surgeon was astonished as she thought Ladybug would never bear weight on her legs let alone use them to walk.

The biggest piece of evidence that my little bug is writing her own story is that she, against all odds celebrated her 5th birthday.  I remember doing the documentary for Mac Kids nearly 4 years ago and sharing our story including her life expectancy of no more than 3 years.  I’m unbelievably happy everyone was wrong, and now tell every new parent travelling down the same road to never lose hope.

IMG_0038

The arrival of our little man in August has meant a few months of arranging and rearranging routines, however, it is worth every sleepless night.  Which surprisingly is mostly from Ladybug and not the baby. He is already showing how much he loves his big sister. He’s mastered pulling her hair and she’s mastered swatting his hand to let go of her hair.  The calmness they bring each other when they are side by side is picture perfect, and I know their love will grown every day.

Coming Soon: Ladybugs new wheels!

Tags: ,

Miracle Treat Day!

8 Aug

DQ

On Thursday August 8th, 2013, all proceeds from every Blizzard®Treat purchased at participating DQ® stores will be donated to your local Children’s Miracle Network® member hospital.

For us that hospital is Mac Kids.  I will never forget our first DQ Miracle Treat Day experience – it was during one of Ladybugs longest hospital stays and I was overwhelmed with uncertainty and beyond exhausted. One of the nurses came up to me and said “Happy Miracle Treat Day!” To which I replied thanks. Not having any clue what she was talking about. She then told me that the local Dairy Queen had brought in Blizzard®Treats for all the children and parents who were staying in the hospital. Let me tell you there is nothing like ice cream and sugar to boost ones morale. It was by far the best Blizzard®Treat I have ever had. I’m looking forward to heading out this evening to enjoy my Blizzard®Treat in support of the Children’s Miracle Network and Mac Kids.

Since 1984 DQ Canada has raised over $20 million in support of Children’s Miracle Network. Let’s make 2013 a record-breaking year! Join DQ and help make miracles happen.
https://www.facebook.com/events/617893501563309/

Tags: , , , , , ,

One Smile

7 Aug

I know that I’ve written a few times about the special bond between parents who have children in the hospital, however, I couldn’t help but dive a little bit further into a secret society of moms who have children with special needs.

Yesterday while leaving an appointment at Mac Kids (all is good) I noticed a mama of two beautiful children who just happened to be in wheelchairs. While I was walking towards our vehicle she looked at me and smiled, I smiled back and carried on putting Ladybug in her car seat.  As odd to some as it may sound when we looked at each other and then at each others beautiful kiddos and smiled I felt like I had made an instant friend who I could talk to about anything.

This isn’t the first time this has happened either. Last year while waiting to see Ladybugs orthopedic surgeon I opted to sit outside the clinic as it was jam-packed with kids and parents.  Sitting next to me was the most beautiful young women ever. She had gorgeous long wavy red hair, stylish clothes, a beaded necklace, cool wheelchair and feeding tube. When I looked at her I saw Ladybug in 10-15 years. The conversation with her mom started with the wait time to see the doc.  Within the 1/2 hour we sat next to each other we talked about everything from feeding tubes, relationships, different types of therapy options and on and on and on. I felt such a connection to this mama that when it was time for her to leave we exchanged email addresses, hugged and I cried. It was one of the first moments I felt like I was a part of a very not so secret, secret society.

A society where it’s perfectly acceptable to ask a stranger what they think about the government provided therapies or lack there of for our children,  how much their wheelchair conversion van cost or how has their relationship held up over the years. Yep, that’s right!  I have asked all of these questions to women who 5 minutes before the “I know what you are going through smile”  was exchanged we were complete strangers.

Only another tubie mama can relate to and laugh with you when you tell them you were cleaning formula off of the walls and ceiling. Only another mama of a child who is unable to speak will tear up when you tell them your daughter is now waving to her friends during the “hello everybody” song at the Library story-time.  Only a mama whose child is in a wheelchair knows how infuriating it is to have to bring your child out-of-town to go to a wheelchair accessible school or playground.

All it takes is that one warm-hearted I know what you’re going through smile from a complete stranger to uplift you and brighten your day.

Thank you J* for letting me peek inside your very cool multi wheelchair accessible van, for being an amazing mama to those 4 children and for inspiring not only this blog post but me as well.

Tags: ,

1 in 7 Billion

23 May

7 Billion The current worlds population (and growing)

3 The number of incredible children in the world who share a new type of CDG.

1 The number of girls in the whole wide world who have this new type of CDG.

That 1 girl is my beautiful Ladybug.

Several months ago we received an email that essentially changed our lives. When Ladybug was first diagnosed with CDG we pleaded with the Ministry of Health (Canadian Government) to cover a genetic test for her. Their response was and I quote “what difference will it make”. The governments thought was it won’t change her prognosis so what’s the point.

I was devastated that our “wonderful”, “fabulous” Canadian health care system had the gall to say that. Many thoughts crossed my mind – write to local and provincial politicians, call this woman at the Ministry of Health and tell her exactly why it was so important. Not long after I got my first taste of what it would be like to fight for my daughters rights, a post was made in a CDG group I belong to. The Sanford Burnham Institute was asking us to contact them if we would be interested in further testing to discover our children’s subtypes. It’s so cliché , yet so true … “ When one door closes, another opens ”

Now I had to try to convince our genetics team to take samples and send them to California. Fortunately our entire team at Mc Master Children’s hospital are phenomenal so they didn’t even give it a second thought.

Fast forward many, many months and the email arrived. The initial email was incredibly cryptic and read something like. We’ve made a discovery. stop. It’s a pretty big deal. stop. Can’t say too much now but will let you know soon. stop. Of course I might be exaggerating a teeny tiny bit. But that’s what it felt like.

The first portion of the HUGE news was that Ladybugs little friend in Jolly Ol’ England was indeed the same subtype as she. DUH…..yes I just said duh! We (being the two parents) have felt this in our hearts the moment we began chatting and sharing pictures of our kids. Then there was a third little boy who was also the same subtype from the USA.

Here is a picture from the Sanford-Burnham Science Blog – The Beaker that featured our 3 special kiddos. The new CDG finding was also published in The American Journal of Human Genetics and Science Daily to name a few. If anyone would like to see these please feel free to email me.
264428_10151424814447636_28861166_n

The next portion of news was that these three beautiful children – whom I love to bits, have a brand new type of CDG. CDG SLC35A2. This explanation will require a blog post of its own which will come soon.

It was and still is A LOT to take in. There were quite a few new developments on top of how rare she really is that I’m still trying to digest, and when the time is right I will share them with everyone.

Tags: , , , , , ,

My Mac Kids Friends

30 Sep

As I’m beginning to plan Ladybugs 3rd birthday party, I’ve found myself adding her hospital friends to the top of the guest list.

Not only have these kids been a HUGE part of our lives these past few years, their moms have become a very big part of my life. When you spend day after day in a little curtain enclosed space listening to pompous jr. residents, you need a buddy to vent to who knows exactly what you are feeling. These moms have helped me through so much and I don’t know where I’d be without them.

Over these past 3 years, I have learned that other parents of medically fragile/special needs children are far better resources than any other out there. Whether it be for suggestions on the best feeding pumps or emotional support – there is a real camaraderie amongst us.

Ladybug first met her BFF Bean when they were barely 2 months old. They were roommates on 3C in Mac Kids and very quickly became known as the little divas on the floor. It has been so amazing to watch these two grow up. Bean is very proud of the fact that her best friend has glasses and a clamp (feeding tube clamp) just like her.  The first picture is when the girls shared a hospital stay the 2nd time. The second picture is from the 3rd hospital stay together where us moms planned a photo shoot with the two girls to pass time. The last picture is from the girls recent morning out to Build-A-Bear. I have to say it was one of the best mornings out I’ve had in a while. Bean and Ladybug love each other so much and it was wonderful to see them interacting outside of a hospital setting. Bean’s mommy has one of the best sense of humours around, and is truly an inspiration. I love spending time with both of them. The best part for me was after our critters were created, we both brought the girls out to give meds and flush the g-tubes. I say this because it reassured me that I’m never alone in this. These moms are just like me, and I’m grateful to have been given the opportunity to have them in my life.

This is Zacky – he is like Ladybug’s big brother and just like Bean has been a roommate at Mac Kids. During Ladybugs most recent hospital stay Zacky stopped by to visit her. She wasn’t feeling well and was a little fussy, so Zacky began to sing Twinkle Twinkle Little Star to cheer her up. As soon as he started singing Ladybug perked up and began to smile. He is an incredibly special little boy who instantly wins over our hearts. Not to mention he has one heck of an amazing mama who has done a fantastic job raising this little man. The picture is an older one so I’m hoping to get some updates in December.

Tags: , , , , ,

To See Or Not To See

8 Mar

When ladybug was a mere few months old we were told that she would most likely have little to no vision. As time went on nothing had really changed, all the docs could tell us was we would have to wait and see but it wasn’t promising.

This past year we have noticed our little girl turn towards sources of light, tracking toys that light up, and looking at 3D butterflies on her wall. With the help of the Blind-Low Vision team and the introduction of the Little Room so  many possibilities have opened up.

Our most recent visit to the ophthalmologist at Mac Kids led to a new discovery. Ladybug has an astigmatism in both eyes, quite a bit more so in the left. There was a CHANCE that glasses could help improve what vision she does have and it couldn’t hurt to try.

I didn’t even hesitate. If there is anything, anything at all that I can do to help my little bug live a better life I will do it. So the search began for the perfect glasses.  Pink ones, purple ones, teal ones, plastic ones, wire frames, round rubber ones that made her look like Mrs. Potato Head.  There were so many but not one fit her properly.  After a bit of research I found a company called Lafont that had a line of glasses for infants and children. The ones for infants had a very soft backing of silicone not only to help prevent the glasses from sliding down her little bridge but also for making them more comfortable. They were perfect. The only issue was that the company was in France and all the stores that were listed on the website were overseas. I pulled up a new page and asked the Google Gods if any places in Ontario carried the line.  After some searching I found that Glazier Opticians in Oakville carries Lafont, two seconds later I was on the phone and made an appointment to come in the following day to try on a few pairs.  As luck would have it the sales rep from Lafont would be in and have many options.

This is when we found THEE pair.  They are pretty, pink and perfect. Ladybug has now had them for nearly 3 weeks. Within the first few days she had discovered how to slide her finger down her forehead and pull the glasses to her mouth. The moment I saw her doing this I had flash backs to the great battle of the NG tube. (Nasogastric feeding tube) She used the exact same technique to repeatedly pull out her NG tube no matter how much Tegaderm tape we would put on her little cheek.

On the bright side she was using her hands to bring something to her mouth – albeit not the traditional way that most “normal” children do but that didn’t matter one bit.  Besides normal is far too predictable.

This past week she has been keeping the glasses on pretty much all day. It’s hard to tell if they are making a huge difference but I do notice little differences in how she looks at things. Her mirror ball and other toys in the little room will hold her attention for longer periods, she seems to be giggling more often, and just the fact that she is keeping them on suggests to me that they are helping her see the world in a new way.

Tags: , , , , , ,