Things have been going very well. (k.o.w.) Ladybug has fully recovered from the Croup, her head control is amazing and…..drumroll please…..she is now batting at toys on her play gym. Mostly the chime butterfly. I was in the kitchen and kept hearing the chime go off – my initial thought was that our dog was giving kisses or walked by and got it with her tail. I couldn’t have been more wrong. There our ladybug was, keeping her eye on the butterfly chime, winding up the right arm, then BAM nails the butterfly square on and starts giggling. I freaked out – in a good way of course and grabbed the video camera to record yet another milestone reached. Horray!
As I’ve written previously, my little ladybug is being seen by nearly every team at the children’s hospital. With the exception of a few – one of which is the metabolic team. That’s certainly not for lack of trying on our part. When my princess was in the hospital this last visit, there was talk about referring her to the metabolic dept. Understandably with everything else going on at the time it wasn’t really a necessity and got put on the back burner.
In the past few months I’ve asked our current pediatrician, and GI doc to refer us. CDG is in part a metabolic disorder, I would really like to talk with the team and see if collaboratively we can come up with some ideas that could help her. All I want is the best possible health care I can get for my daughter.
I’m guessing the referrals either got misplaced or forgot about all together, but if there is anything I’ve learned this past year it’s to be persistent. So I called genetics – finally someone listened and called for the referral. Just goes to show that the squeaky wheel gets the grease.
Fast forward to yesterday – fairly typical start to the day, around noon things began to go amiss. I know that if you think positive you will attract positive but do you ever have those days where you receive just one bit of bad news and then everything negative seems to snowball? That was yesterday – and the pièce de résistance was getting a call from the genetics counsellor at around 4pm telling me that we wouldn’t be able to see anyone from the metabolic team at McMaster.
At first I thought she was joking, after all how could this be it’s pretty simple – my daughter has CDG, one of the most important teams you would think she would need is the metabolic team. Sadly it wasn’t a joke. The metabolic team at MCH will not see my ladybug because they are no longer accepting referrals.
That snowball I was mentioning earlier – well it has been collecting things all day, and has now just rolled down a hill, through a field filled with dirt and icky gross things and knocked me flat on my ass.
I couldn’t even finish my conversation with genetics. How is it that a baby who has a very rare metabolic disorder (the 1st case ever at this hospital) can’t see the specialists she needs because they have filled their quota of patients.
I actually began writing this yesterday – it’s probably a good thing I decided to sleep on it and begin today. With the shape I was in, this post would have primarily been fueled by anger, frustration, and immense sadness.
Little did I know everything was about to change.
I was preparing my ladybug for her bedtime story routine, I put out her pj’s, and was in the midst of changing her diaper when she proceeded to pee everywhere. You would think after my day it would have been my breaking point. But, when I looked down at her she was giggling then looked me straight in the eye and gave me the biggest smile. I couldn’t help but laugh. She has such a contagious smile. Nothing else mattered after that, so what if there was urine EVERYWHERE that’s what washing machines are for. As for everything else that happened that day, some wasn’t even worth shedding a tear about, and getting into see a metabolic specialist could be dealt with another day. It’s this smile that matters more than anything else in the world to me.
That evening I was fortunate enough to be able to talk to other parents in the CDG family, and most importantly my true friends. The ones who can sense when I’m having a bad day and would do everything in their power to help lift me up. Thank you. xoxo
“You never really lose friends; you just discover who your true friends are.” Unknown
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Keep your chin up… and stick to your grounds every fight is worth it for your precious ladybug. Was so glad to get to see you guys while we were down there. You’re little ladybug is adorable!!
It was so nice seeing you too. I’m sure in the end things will work out, I just have to keep pushing.
A contagious smile indeed!!! How blessed you are to have each other — I can tell together you will be an unbeatable team! 🙂 HUGS
Thank you so much Janice. My ladybug is both my inspiration and motivation.