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Tuesday, July 29, 2014

So she can fly........

I'm really glad that I had the opportunity to speak with some friends and our team of professionals today after the news we received from a routine check-up at the hospital with our daughter. If you don't already know....our littlest daughter has spastic quadriplegic cerebral palsy, (spastic quadriplegia is the most serious and disabling form of spastic cerebral palsy)  Every year our daughter attends a routine checkup, and today we found out that her right hip is misplaced. However she's not in pain and still remains our happy little girl. Seeing the xrays while speaking with the specialist I was shocked. Here we are healthy, happy and experiencing life daily without any knowledge of our daughter's condition. I asked the specialist, "Was it something we've done?" His reply is, "No" With growth, children with cerebral palsy most likely will experience physical changes with their body, especially concerning their hips that is uncontrollable. My heart started to flutter, and all I could think of while my daughter was sitting their smiling......was once again, I'm in a position where I can't change what is, I can't protect nor console. We have been given a six month time frame with our daughter surgery's date that will consist of a VDRO, a derotation osteotomy of the femur, a DEGA, a osteotomy of the pelvis and a adductor tendor release. Three surgery's with a 3-6 month recovery period with limited movement. The surgery should tip the ball joint back into it's socket, the surgeon would like to deepen the socket and they want to pull her thigh tendons to help pull the hip back into place because she's in risk at age 7 of a hip dislocation. Pins will be used to keep everything in it's original origin. I left the hospital with my daughter and I sat in my van and cried. Every year we try and hide from illnesses hoping to stay away from the hospital with our daughter. When our daughter gets sick it's a huge ordeal keeping her away from hospitalization and intravenous. I know some people must think I'm whining, and complaining about our daughter's condition that I am completely aware about. I'm not. What people don't understand is, even getting a head cold can be a traumatic experience. Now three future operations with a 3-6 month recovery time for our daughter that doesn't understand, is stepping back 1000 times over. She will be at risk for respiratory, infection, mobility and nutrition. You betcha I cried. I not only cried for her, I cried for all of us because I was warned that it's a horrible recovery when the operation goes well. Our daughter is a high risk patient. So while I absorbed our new information, our future.....I already started to prepare our supports. Our practical therapist, and our occupational therapist is now working towards supporting our daughter mentally and physically. Ultimately (after recovery) hopes are that this is the best for her. For me, as her mother, I know it will be very hard. I reflected back when one of my sons had three lung surgeries. Witnessing him laying in the hospital bed with tubes coming out of his chest, seeing tears roll downs his cheeks made me weak. I had to remove myself and cry, I remember searching for coin because there was no debit for a coffee while breaking down in front of everyone. I felt not only alone but pathetic. You're probably wondering why I'm sharing this with you? I am because I can honestly say, it is the most difficult feeling a mother can experience as her hands are tied. It's a helpless feeling - and I only feel this when I can't protect my children from pain. I know this will be a challenging time in our life. It could be the most difficult I've faced since almost loosing my own life, since the time I couldn't bring home my premature baby......I know in my heart, my mind and soul that I personally will struggle emotionally but knowing this is just a time, and it will be a reflection like I reflect now. This is meant to be (I need to keep telling myself) because hopefully, one day in our daughter's future, she will walk. Hopefully she won't remember like her mother will.......what she went through. Hopefully this will be the last operation but that's premature hopeful thinking. While leaving the hospital today, our daughter's specialist gave me advise. He said, "Enjoy the time now, enjoy her smiles, and most importantly take time for yourself" Ironically enough.....even before this appointment I said "Yes" to a road trip and hike in the States. I leave August 1, then when I return we are going camping. We are going to continue our summer as planned, we will have fun, and be adventurous until we can't. I will write after August 15th.....when we return from camping. Hopefully after that....the wheelchair swing at our local park is up and running before our daughters surgery, so she can fly........

1 comment:

  1. Praying that all the surgeries go well and her hip condition stabilizes.