Monday, June 24, 2013

Summer musings

Well, I have managed to survive six weeks of work without another "incident". I am learning the various job duties and responsibilities and finding my way. I really enjoy the work I am doing. It is challenging, demanding, hard, rewarding, and a priviledge. To be able to come along side individuals who are in difficult situations is what I have always liked about being a social worker. I am adjusting to working nights and as of now, I like it. The vibe in the hospital at night is laid back and working part time allows me to catch up on missed sleep and have time with the family too. Summer is in full swing here. The balance of the kids going to Curious Kids daycare two to three days a week, and being home and being able to hang out has been good. Ellie joined Matthew and Caroline at CK this summer and is love being with the "big kids". They have lots of fun activities, field trips and weekly visits to a lake for swimming. Jeff is planning on taking the kids to Silver Lake again for our annual vacation with his side of the family. I won't be able to join him this year as I have no vacation until August. The kids have already gone to Vacation Bible School and Caroline and Matthew both have camps planned, Caroline is going to the Springhill day camp she loved last year and Matthew is going to WMU's hockey camp. Poor Ellie gets to hang with mom for a few more years until she is old enough. Although if you ask her she will emphatically state, "ME BIG KID TOO!"
Matthew had his follow-up apt with the pediatric neurologist last week and we found out that his MRI did show an abnormality, even though we were initially told it was fine. He has something called a heterotopia on the right side of his cerebellum. It is very rare and it is hard to find out things about it. Basically it doesn't change much as far as how we are treating his symptoms, the heterotopia does offer additional explanation of some of his struggles though, and the neurologist feels he  still has mild cp. When I first heard this news, I will admit, I was freaked out. Mostly because I thought his MRI was fine and also because children who have heterotopias often develop a seizure issue in their teenage years. But, after talking with the neurologist and his pediatrician, I feel incredibly blessed. A heterotopia is basically a miscollection of cells that are found in the grey matter of the brain. Many children who have this die in utero or are born with profound impairments. Matthew is blessed. Sure, he struggles with some things, but he is a normal, happy, typical eight year old boy. We are so grateful that we continue to have the means to get him the assistance and support he needs to be all HE desires. I couldn't help but remember the sixth week of my pregnancy with Matthew as I have dealt with this new spin on his diagnosis. Due to several issues with my blood work, spotting and the OB/GYN not being able to find a heartbeat, they recommended I schedule a D and C. I refused and pleaded with them to wait a week and they agreed. I remember this all happened over the Labor Day holiday and I was so terrified and scared that we had lost out little baby. I have never been as happy as when I saw that little blip of a heartbeat, going strong on the screen. Our baby, our Matthew, was a fighter. He has forged his own way, even from the beginning. We're so thankful to be blessed with our incredibly unique, sweet son!