If there is on thing that having a child with special needs has taught me, it’s that there is no such thing as a silly question. Some of the questions I have asked doctors may have seemed off the wall, however to our situation were very pertinent, and vice versa. I can’t even begin to count the number of times the docs have asked me questions that have left a puzzling look on my face that most likely read – you’ve got to be joking. But…..that’s how they learn about rare disorders, that’s how I learned that a telescoping intestine (Intussusception) is exactly as it sounds. Most importantly that is how others learn about life with a child who has special needs, CDG, and how amazing our ladybug is.
Yesterday we had a wonderful little visit at McMaster Children’s Hospital to get some monthly blood work done and heparinze her port-o-cath. The heparin prevents the blood from clotting and must be done monthly if the port is not accessed. I say wonderful because it has become such a routine, it was like dropping by to see family. We even stopped for a few cuddles from our favourite nurses on 3C.
While we were in the waiting room a pregnant woman commented on how sweet ladybug was. Then proceeded to ask the most common question: “how old is she?”
*Deep breath* then wait for the typical confused look I get, a year and a half I replied. This time was different though. Instead of the usual 10 second stare as if they think I’m joking this woman asked why she is so little. I wanted to jump up and give her a hug! I began to give her a very brief outline of what ladybug has, she then proceeded to ask about her development and abilities thus far. Before I had a chance to answer she apologized if she was prying or if the questions seemed silly. I then had a flashback to my elementary school years and the teacher drilling into our little heads that there is no such thing as a silly question.
This woman had made my day, rather than staring at me looking confused and then shrugging it off she opted to ask more about why ladybug was so tiny for her age. I realize that not everyone is comfortable with talking about why their child is special, but for me and all of the mammas I know we are open books.
So this is my plea to everyone out there – ask away. I am very open to talking about everything we have gone through from my pregnancy losses, to ladybugs future, to what her favourite song is (right now it’s a toss up between Kesha -Tik Tok and If You’re Happy and You Know It).
Like Sir Francis Bacon once said “Knowledge is Power”. The more people ask questions the more they can learn, not only about CDG but about tolerance and acceptance.
Yesterday we were able to pick up the adorable AFO’s. (Ankle Foot Orthotic) They were by far the tiniest that many had ever seen made at the site.
We decided on a butterfly pattern with a variety of different colours which enabled easy coordination to her wardrobe.
With ladybugs new AFO’s we had to get new shoes. Like many women I’ve always had a love affair with shoes. Since having ladybug my focus has transitioned from mary-janes and heels to medicine and doctors.
It was quite obvious that my little princess had the same love for shoe shopping as I once had. She was able to sprawl out on a large circular bench and be given copious amounts of attention.
At this point her feet alone are far too tiny to fit shoes larger than size 0/NB. With the AFO’s I knew that would not be the case. Yesterday, I spent my birthday picking up the AFO’s, and then bringing ladybug shoe shopping for the first time. *Tear* The moment I walked into Kiddie Kobbler I swear I heard angelic voices singing and had seen beams of golden light shining down on the store. Not only that – the sales girl had plenty of experience fitting shoes for children with AFO’s and knew exactly what would and wouldn’t work. It was probably a good thing that her feet even with the AFO’s were still quite small and the shoe selection was limited, otherwise I would have spent an even bigger small fortune. None of that mattered though, these AFO’s coupled with physio and hope were going to enable my daughter to view the world differently. She would be able to build muscle strength, stand, jump, and I truly feel in my heart that she will one day be able to walk.
Unlike most children ladybugs growth rate is very slow. Her itty bitty feet have slowly but surely grown very little in her 1 1/2 years, so in one respect I am quite lucky that she will be able to get a lot of use out of her new shoes. Between that and wanting to do what ever I can to help her reach these goals, I didn’t mind splurging on 2 pairs while singing “New Shoes” by Paolo Nutini.
A few months ago we welcomed our first respite nurse into our family. Little did I know how big of an impact she would have on all of us.
I knew she would be fantastic when she jumped right in and began interacting with our ladybug within the first 15 mins upon arrival. Not only did she help our little night-time party princess fall into an early to bed routine, she also helped me realize that it is ok to ask for help from time to time.
Did I mention she treated my princess like one of her own? She was always giving snuggles, and a massage and bedtime stories became integral parts of ladybugs early bedtime routine.
Early this month nurse Lisa finished her last shift with us. As quickly as she came into our lives she had left. As sad as it truly was to see her leave we want to wish her all the best in her travels and new position in the UK. Even though a little part of me wants to be really selfish and keep her to ourselves.
There is always a place in our home and heart for you nurse Lisa – thank you so much for being so wonderful to our little ladybug.
What an incredible whirlwind of fabulousness these past few weeks have been. The documentary for McMaster Children’s Hospital which feature my ladybug aired last weekend and was fantastic. Now it’s back to our typical routine of doctors appointments and packing for the move. Which is in 10 days. (Freaking out just a bit, as packing isn’t even close to being done)
The most anticipated and fought for appointment was last Friday. Our little ladybug finally got fitted for her very first pair of AFO’s. AFO stands for ankle-foot orthotic. It is a brace (usually plastic) worn on the lower leg and foot to support the ankle, hold the foot and ankle in the correct position, and correct foot-drop.
The process was actually quite easy. An orthotist put a cloth sleeve on the itty bitty legs and feet then she wrapped ladybugs leg from her knee to the tip of her toes in a fiberglass casting material. After some smoothing out the cast had set and was ready to come off.
The same was repeated on the opposite leg and then we were done!
We will head back on the 21st of June to pick them up. I can’t wait to see them. Long gone are the days when prosthetics and orthotics look like they belong on a manikin. We were able to flip through a binder full of different patterns that ranged from camouflage (sadly no pink), fish, butterflies, hearts and many more. Keep an eye out to see which pattern we decided on and how absolutely adorable they look.
She has been trying with all her might to stand but just doesn’t have enough muscle strength to last for more than a second or two. Put that together with her love of bouncing/jumping especially in her Jumparoo and the AFO’s will be the first step in allowing her to take a first step.
With a pillow underneath for leverage my little ladybug has discovered that she can bounce herself in the jumparoo. I can only imagine what she will be able to do once she gets the AFO’s at the end of the month.
After the interviews, filming, photo shoots, and weeks of anticipation for “Where Dreams Take Flight” (one-hour documentary on CHCH TV which includes our ladybug), the Mac Kids Miracle Weekend is finally upon us. I had the immense pleasure of meeting another family that is being featured on the documentary, and we were joined by the team from Shooting Eye Productions, along with staff from Marketing & Communications and Corporate & Community Initiatives at the Hamilton Health Sciences Foundation for the family screening of “Where Dreams Take Flight”.
The documentary was absolutely amazing. Being able to see the finished product exceeded every expectation I had. To say it brought tears to my eyes would be an understatement. I had tears in my eyes, down my cheek, and had a drenched stock pile of facial tissue in my hand. Being able to watch what other families have gone through, knowing that all though our journeys differ we can all relate on some level was very humbling. I felt such a strong connection to the family sitting behind us, there is really no way to describe it.
There are three stories that are featured on the “Where Dreams Take Flight” documentary, with our ladybug being smack dab in the middle.
I hope that everyone is able to take some time out of their crazy busy schedules to watch CHCH TV this weekend.
Mac Kids Presents: “Where Dreams Take Flight”
Friday, June 3 at 7 p.m.
Saturday, June 4 at 7 p.m.
Sunday, June 5 at 5 p.m.
If you don’t get a chance to watch this weekend you can always stop by the Mac Kids Website and see what incredible changes are taking place to help heal our future. You can also make a donation for the Mac Kids Miracle Weekend here.
The impact of Miracle Weekend is felt every day throughout McMaster Children’s Hospital, as donations support the costs to upgrade and purchase new medical equipment and fund programs that improve the lives of children across this region.