Cerebral Palsy - Part 2

A little bundle of joy, so sweet, so precious. 10 fingers 10 toes. What more could we have asked for?

He had been squished sideways under my ribcage for quite some time, his left foot folded into himself, his left heel actually pushing so hard on his scrotum it left a bruise that was there for a few days. We were referred to the pediatric physiotherapist at the hospital right away for the foot and began therapy once a week.

During his second week alive he developed a pseudo tumor on the side of his neck. Torticollis, basically a bulge, and he had trouble even resting his head straight. His head would consently fall with his ear to his shoulder. Therefore, the hospital physiotherpaist also worked with us on that.

This was a rough period, all I can say is that you do it because you have to, really what wouldn't you do for this wonderful gift you have been given.

So, as I was recovering from an emergency C-section, my sister or mother and I would make weekly visits to the hospital for therapy. Every diaper change we had a series of exercises to perform. Most involved stretching and pulling on various body parts and muscle groups. We performed these stretches until he cried and then we did it for an additional count of 10. We also had a tiny foot brace made for him that I had to strap him into 23 hours a day. (This is another post, that will take some time to write).

We were referred to an Orthopedic surgeon, who off the hop had suggested surgery. Me not being an invasive medical procedure advocate, recoiled in horror at this suggestion and stated that I would like to give physio and the brace a try before we resorted to surgery to nick the heel cord to allow the foot to fall properly and stretch the hamstring out. (For the rest of my life I will question this decision, would that have made the difference in his progress had he had the surgery at this early stage.)

I'm not really sure if I can articulate what this has done to my pscyhe, but I'm sure it has made me more emotional and more vulernable on the inside and I'm sure that sometimes I appear more rough and jagged on the outside.

We continued monthly "well baby" checkups with our GP. Looking back now, each time she reviewed his progress there was furrow in her brow. But at the time, in denial, I kept saying he was just a little behind.

We continued monthly "well baby" checkups with the pediatrician at the hospital (not the same one that saw us on the morning after - thank god!) She continued to say his foot was doing well. At four months she discharged us, saying take my healthy baby home and that I may need to continue the therpay for his foot for about a year.

At seven months my GP had made a note for herself and at eight months she discussed it with me. She felt he was having a developmental delay. She couldn't put her finger on it but she thought we should see a pediatrician. I was incredulous, I asked , "you mean like the one that discharged us 4 months ago?"

So back to the PED we went, this time she ordered tests, blood test, creatine tests, liver enzyme and function tests. We were referred to a genetic specialist at our leading Ontario Univeristy Medical Centre.

Imagine if you will trying to take blood from a 2 month old baby, and then taking vials and vials of blood from a 8month old baby. My sister had to leave the room. I cried the whole way home.