Let me start of with our story. My daughter Cal was an almost full term baby (born at 36 weeks and 2 days). Pregnancy was smooth with no complications. My water bag leaked and I started contractions late evening March 28. Gave birth naturally on March 29, 2009 at 10:18pm. She was slightly janundiced and had inital feeding problems. She was not sucking well enough that she lost weight in her first 5 days of life. With the guidance and help of our pedia who is a staunch advocate for breastfeeding, we successfully recovered and feeding never became an issue again.
At 6 months, I started noticing that she was not hitting her milestones (i.e rolling, sitting, crawling, etc.). Raised the flag with our pedia and initially they just said that she might just be delayed. They recommended to increase her tummy time. We religiously did that but by 7 months there were no improvements. We again consulted our pedia and this time they recommended that we go see a developmental pedia. Inital assessment of the Dev Ped was that she had global developmental delay and she would need PT and eventually OT. At this point, we disn't have any inkling that we were dealing with cerebral palsy. We then proceeded to go to the therapy center recommended by the Dev Ped. Imagine our shock during the inital assessment of the PT that she had cerebral palsy. We were devastated.
Initially, it was shock, anger, anxiety, sadness, and then fear. It was mixed emotions and we didn't know where to start. At some point I was entering into depression just thinking of what the future may hold for my daughter. It was my husband together with our closest friend who pulled me out of the depression. What strucked me the most was when my husband posted the question to me, "Does your love for our daughter any less given that she has special needs?" That really woke me up, I was so busy wallowing in depression and thinking about the future that I was not enjoying every minute I spent with my daughter. Instead of focussing on what she cannot do, I focussed on what she can do. I also started researching everything about cerebral palsy.
I read up on cerebral palsy not to figure out what caused it but what can we do at this point. I realized that why should I focus my energy on finding the answer on why she has cerebral palsy, it will not answer the pressing need of what can be done to help her.
At 8 months old, she started PT. We went through several PT's, OT's and Speech Therapists. It was also a trial and error on our part, mainly because for me it's not as simple as doing the motions or the exercises. It was also vital that the therapist gets to know my daughter and try to figure out what works best for her. We have encountered therapists who are just so structured that they were not in tuned with my daughter that rendered a session or months of therapy pointless. We also had experiences of her having " pilay" because the therapist was not really working with her body.
Luckily, after the trial and error we have found the best team for her. She has 2 PT's, 1 OT and 1 speech. Aside from school everyday from 8:30-12pm, she has therapy everyday. Does it become tiring for her? Yes, it does but she she needs it. Does it break my heart? Of course it does but I needed to do tough love in this case.
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