Life has been busy the past two months. We've doing a lot of work around the house. We have celebrated Luke's 2nd birthday. I've been swamped with school work as I finally finish school. Luke himself has kept us on our toes the past few weeks and months.
In May we were finally able to have the MRI done I have been asking for. The results were what I figured and planned on...severe bilateral periventricular leukomalacia (PVL). In non-medical terms, there is dead areas in the middle of his brain. All I have ever been told is that therapy is the only option to help treat Luke. I was never given outcomes, Luke's life was a big unknown. I don't like the unknown. I'm a planner. I am also a realist...don't sugarcoat things for me. Instead of just getting the PVL diagnosis I wanted more. I want answers to why things are the way they are. I want someone to tell me why? Maybe it's the medical background, maybe it's the fact that I've been next to Luke everyday of his short life watching him fight. I want someone to tell me what we're in for, and specifics at that. I wanted a neurology consult and diagnosis. Today I finally got what I was looking for.
After a discussion and exam with the neurologist she granted us the diagnosis of a mild case of cerebral palsy. Why do I say "grant?" I might be an odd person, but that is what I needed to hear. For the past year I looked into this diagnosis. The Luke's mannerisms and difficulties fit along with the diagnosis. I just wanted someone to back me up. I also needed the diagnosis to get Luke all the funding and help that he will need now and in the future. I know many people would say just having a child is so expensive. Try having a child that has special needs. Yes we have insurance, but we live on one income and the bills are still there and more larger ones are coming in the near future. We can take all the help we can get.
More than the insurance and funding issues, I needed the diagnosis for my own sanity. When Jonathin and I found out we were expecting, we had such big dreams for our son. Please don't think we are now completely depressed and disappointed, because Luke won't live up to our dreams. They were exactly that..."our dreams." Every parent has them, now we move to our new reality and dreams...to walk unassisted, run and play in our backyard, to go to a restaurant and eat a meal off the kids meal, tell me when he hurts or when he is hungry, sit in the living room and play with a toy. These are now my dreams that bring tears to my eyes. Sure we are guilty of watching other kids and getting upset. We are allowed that, but our Superman will get there. These little tasks will take more time and work, but they will be so worth it when he reaches these goals. So my dreams of Luke warming up in those famous striped pants or wearing a gold helmet that matches a famous dome haven't disappeared, but have been overtaken by the more important things in life.
Let's review: as of right now Luke can't sit, crawl, stand, walk, talk more than hi or hey, won't eat or drink, or gain weight. To someone on the outside or someone that don't understand things from the beginning or his special birth it looks like a dismal life. I however would argue till I am blue in the face. This little boy isn't supposed to be here. He fought every obstacle that was placed in front of him. He is stubborn and determined. How else do you overcome a 20% chance of life, numerous infections, a blood pressure as low as 18/12, kidneys determined to shut down, 3 surgeries at once, and not to mention a crazy mother like me. Now we have one less obstacle to cross and we can hopefully move forward.
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| It's a huge accomplishment for smiley to ride in a cart |
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| Cruisin' |
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| May, June, and July cousins |
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| the diagnosis |
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| The only fair animal Luke doesn't cry and try to move away from |
