Archive | August, 2013

3 Years and Thriving!

23 Aug

It’s almost unimaginable to think that 3 years ago today I joined the blogging world. What’s even more incredible is how far not only my little Ladybug has come but how far I have come.  3 years ago I was struggling with the biggest fear of all – possibly losing my baby girl. Ladybug was so fragile and so sick, all I wanted was a little a peace of mind. I tend to keep my emotions inside until I can comprehend and make sense of everything, but I was becoming so overwhelmed. I knew I needed an outlet and it was on August 23, 2010 I found mine. Beginnings. 

Today for the first time since Ladybugs Mic-Key G-Tube was put in, it came out.  The nurse brought Ladybug to me in one arm and the Mic-Key in the other. The inflatable balloon portion was still inflated. All that went through my mind was I can’t let the hole close up. I went into super mom mode grabbed Ladybug, grabbed a spare tube set, took off her dress and saw for the first time this teeny tiny, itty bitty hole where the tube should be. I had a dear friend whose daughter also has a Mic-Key briefly talk about how she has had to put a new tube in at the craziest of times so I tried to remember what to do. I picked up the shiny new Mic-Key and after a little bit of wiggling I popped it right back into the hole, then inflated the balloon with sterile water to hopefully keep this sucker in its place.

After all was said and done and many cuddles were given I looked down at the old tube still inflated and my heart broke. It must have hurt so much, but my little Ladybug calmed as soon as I began to put the new tube in.

3 years ago I never could have imagined changing a G-Tube let alone changing one by myself.  At that point I was still grasping bolus feeds with a 60CC syringe through her NG tube and we were months away from getting her CDG diagnosis.

Ladybug has been doing quite well and will be starting school part-time this September. The time has flown by and I am ever so excited to see what new adventures the next 3 years will bring. I’m sure by then I’ll be able to change a Mic-Key tube with my eyes closed, one hand behind my back, and balancing on one leg.

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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/

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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.

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