Yesterday I was thinking about all the progress Kendall has made over the last year. One year ago we were given the diagnosis of Infantile Spasms. We were told she would be severely disabled. The life expectancy I found out when I asked (something I have learned NEVER to do!) was early childhood. They said Kendall would never be normal. She wouldn't walk. She wouldn't talk. She probably wouldn't be able to communicate much, if at all. We had heard all these things even earlier, but the firm diagnosis of Infantile Spasms made things so much worse.
That was a hard week. I started to blog more regularly. We started more, stronger, seizure medications. Because of that, her personality was swept away. I was filled with fear and uncertainty. I was still working. Still trying to juggle being a full time mom to two kids and a full time worker made me cranky a lot of the time. My mom was receiving bad news about her health and we weren't sure who was going to care for Kendall. I think I even thought there was still hope in finding her a daycare~! The financial burden of all the medical bills pouring in weighed very heavily on me too. It was this week one year ago we finally completed our Nursing Home stay and were able to qualify and bypass the wait list for the Medically Dependant Children's Program (and receive Medicaid secondary to our insurance.)
One year has passed. And while I never could have imagined we'd add Diabetes or a g-button to our list of things to be concerned with, I feel Kendall has made a ton of progress. She's still working on lots of muscle stuff. We receive some sort of therapy once, sometimes twice or three times a day. We have nursing help which has drastically improved my mental state! But socially she is doing amazing. She knows when someone gets to our house. She greets them with a smile. She also knows when we walk away. She knows when its time for bed, and like any almost two year old protests. She smiles and babbles and can entertain herself for short periods of time. She is her own, unique, beautiful, little person. She enjoys swinging, bouncing, and riding in her chair. She loves bathtime. And car rides. She thrives on routine and when you tell her what you're going to do next, she holds you to it! She can work switch toys. And is steadily increasing her ability to make choices.
Thankfully we found the Ketogenic diet in this past year and were able to keep those darn seizures at bay. We have too many Dr.'s appointments and therapy appointments, but it helps me also to know there is a team of people supporting us through her progress. So when I look back on this year, Kendall has made definite strides. Her vision is improving by the minute. And I just know one day she will sit up on her own, and maybe even take some steps. I've always heard that kids with Cerebral Palsy do things in their own time. And now I believe it! Kendall has her own schedule of events. I can't wait to see where we are a year from now.