A few months ago, Carter, a energetic-fun-loving 21 month old, seemed happy and completely healthy. Life was good. Normal.
But it’s crazy how one day can change your life forever.
After a family vacation earlier this year, Carter began having flu like symptoms … he was diagnosed with an ear infection, bronchitis. And top it off, he was cutting his molars – because of this, his lethargic body seemed somewhat normal. His parents just thought he needed rest and time to recover. But after an entire night of lethargy and vomiting, his parents decided to take him to the ER. Even the doctors there, however, agreed that perhaps he was just fighting his ear infections and needed more rest and was sent home.
Another night passed and Carter’s situation did not change. For two days, he barely woke up or spoke. Finally, his parents took him back to the ER where the doctors did a CT scan and some blood work.
As parents, their worst fear came true when the results of the tests came back.
The doctor rushed back into the room and explained their sweet little boy had a cavernous hemangioma – basically, a massive brain on his bleed the size of a lime – and he needed to be rushed to Sick Kids Hospital in Toronto to undergo surgery as soon as possible.
In under an hour after arriving in Toronto, Carter was whisked away for a two hour emergency brain surgery. Thankfully, Carter pulled through his surgery with amazing strength and all looked well.
But the journey to healing was not over yet for sweet little Carter. After the surgery, he began having seizures – almost 100 per day, his mom says – which needed immediate attention. Further tests will be done later this month. His recovery is slow but sure … His mom, Lea, wrote this for the blog:
“Carter seems to be doing really well. The hard part as his parent is trying to figure out what is normal day to day toddler stuff and what may be a direct result of his surgery or residual pain, seizures, etc. For example, when he throws a major tantrum because I chose the wrong sippy cup to put his milk in – is that because of his regular toddler personality or due to some type of side effect of having major surgery at his age?
He still has at least 2 other hemangiomas on his brain and the hemangiomas may multiply slowly as Carter gets older. There is still and always will be a risk that any of the other “healthy” hemangiomas will also bleed and cause the same symptoms and require another surgery. BUT we’ll cross that bridge when we come to it. They don’t remove the healthy hemangiomas because the risks of removing them outweigh the risks that they pose on their own.
As far as Carter’s day to day though, he lives like a normal, happy, active almost 2 year old. He is back to being active – running outside, riding his tricycle, jumping on our inflatable enclosed trampoline. He is definitely able to learn. Although his speech seems a bit delayed for his age (the massive bleed was directly in the part of his brain that controls speech) he is progressing daily. The therapists said they think he’s doing really well.
The surgeons gave me the go ahead to register him for Playball this summer. And because his scar is healing he should be okay for swimming this summer too. All of those things I took for granted. I am so happy he’ll be able to participate in some “normal” kid activities this summer!
It is also hard not knowing exactly what state he is in. At last check he was still having seizures but they were improving. He is still on seizure medication. His next test will be June 29th to see the seizure activity on his brain and following that, we’ll meet with the Neurologist in charge to see where we go from here. BEST case scenario is that the seizures have stopped! Most of his seizures are sub-clinical so they can’t be detected by any movements that he does – they are detected by an EEG which measures electrical activity on his brain. All of the docs have told me to be patient – that the road to total recovery may be slow. “
An amazing fighter. A little super hero.
and with his big sister, Gracie.
{What a cutie!}
Thankful for amazing treatment from Sick Kids, Carter’s parents decided they would like to give something back to help. They are now organizing a fundraiser for the Hospital for Sick Kids, called Carter’s Bounce to Bounce Back. The fundraiser event will take place Sunday, July 3rd, 2011 from 11am-5pm at the Highland Pines Campground in the ARC.
You can find all the details here at their website or you can visit them on facebook.
If you would like to help out or donate for the cause, you can get in touch with them via e-mail.
Keep on being you, Carter … we want to see you completely healthy and well …. you are one pretty special little boy. xo
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by Gigi
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