Lauren’s Journey Of Hope

Its Laurens’ fourth visit to the Children’s Shriners Hospital in Montreal. This visit is filled with worry, uncertainty, apprehension but also with hope. This visit is off to a bad start already because Lauren now has two dislocated hips and that concerns us very much. The rhizotomy surgery that we are hoping for Lauren to have (which right now is her only hope of walking or having some form of mobility) is right now looking very bleak because the surgery requires the patient to have two good hips and that is not Lauren’s case.

The day began with my alarm arousing me out of my sleep into reality. Lauren and I go and make sure Mommy and Bruddy are out of bed; we don’t want to leave anybody ‘Home Alone’. Everybody gets ready and off we go in our van to the St.John’s Airport. It’s kind of icy but the road is okay.

We had a 5-6 hour stop over in Halifax which made for a very long day. But to brighten our day; Aunt Mary, Rochelle and Ben came to visit us at the airport which was so nice to see them again.

Now we’re off to Montreal, Sissy is going strong (no nap yet today), Bruddy is sleeping soundly.

We have arrived in Montreal and had a very, well deserved rest/sleep at our Hotel. Morning came too soon, the uncertainty of what the day could/will bring is overwhelming. But off we go to the Hospital.

X-rays are done first, she was really good. Then the orthopedic surgeon, Dr Canten, came to talk to us. I just hate being kicked in the guts and our hopes being crushed at the same time. She told us Lauren will need both hips reconstructed at separate times. Can’t do both together, she would lose too much blood and too stressing on her body. Then she said, ‘rhizotomy’ was  not an option at all. This was not what we wanted to hear. How can we has parents accept that the one hope of her walking is taken from us? We just felt like leaving and coming home but of course we can’t do that, maybe the day will get better.

Now  it’s off to the 2nd floor for Occupational Therapy and Physio Therapy. Well that was a waste of time. Lauren did not cooperate and just cried through the whole thing. No fault of her’s, she was just exhausted and scared and so were we. They certainly didn’t get a true picture of the real Lauren.

We were receiving some very bad vibes, we knew this was not going in our favour; call it parent intuition. We reluctantly moved to assessment room #1, where we would meet with Dr. Farmer…..he held all the cards. He spoke words we did not want to hear, this is not the way it was supposed to go. Before anything else could be done for Lauren, she has to begin another new medication for dystonia ( clubbing and twisting of her hands, etc). Left and right hip and pelvic reconstructive surgeries done at separate times. Then a baclofen   pump to be surgically placed under the skin, which will help reduce some spasticity. The rhizotomy surgery was certainly not on the top list of options.( I had to stop writing here, I could not see the keyboard for tears. Am I dreaming or is this reality? Are we talking about my little girl, so innocent, so fragile. She doesn’t deserve this, her life is just beginning. Where’s the fairness? God help us to make sense of it all).

This was a lot of information to analyze and accept. So we just couldn’t take anymore and asked if it were okay to go back to our Hotel, which we did.

Now we are back on the ‘Rock’, feeling no further ahead then when we started. How can we put Lauren through this horrible chain of surgeries? Most parents are devastated when their child falls and scratches their knee. And then bad enough are the surgeries but with the hip surgeries she will have to be placed in body casts. In this case, ignorance would be bliss, but we know all to well what a body casts involves.

It’s confirmed today that Lauren’s first hip surgery will be done on March 28th. New medication, artene, for dystonia, will begin next week.

Our hearts are heavy as we try to keep our chins up and shoulders back. Bottom line is Lauren’s life will revolve around surgeries and procedures trying to fight an ugly condition that bears the name Cerebral Palsy.