Where to start? I'm 40, a SAHM, married, and have 4 kids, and one dog. Some of the kids aren't kids anymore. I have a 21 year old son in college. My oldest daughter just graduated high school, will be turning 18 in a little over a month, and starting college in the fall. My younger son is turning 16 this weekend. Then there is Josephine. She was a surprise that came along soon after I married my second husband. She will be three in August. I was initially dismayed to find myself starting over after all that time, but the dismay turned to joy quickly. I adored raising kids.
It is a little out of the ordinary to space kids that far apart and more so for my husband. His other "child" is 33 and has 3 kids of her own, one very close to my youngest son's age. The spacing isn't really anything to blog about though. What makes my family a little different is that my 2 year old is medically complex. We found out at 37 weeks pregnant that there was a health issue that hadn't showed up on the genetic testing given to mothers of "advanced maternal age."
I could try to catch readers up, but my little girl and our family have been through a lot in the 2 years and 10 months since she was born, so I'll summarize for now. It will still be a lot of info. At 3 weeks, Josie was diagnosed with congenital myotonic muscular dystrophy. She was still in the NICU where she would remain until she was a little over 4 months old. She inherited it from me. I have a much less severe form. My older 3 kids all tested negative and can't pass it on. A lot happened in the NICU. She coded (stopped breathing and had to be resuscitated) twice. She had surgery to bring her jaw forward to open her airway, seizures, MRIs, sleep studies, g-tube surgery, and more. I was so happy to bring her home. I thought I understood what we were dealing with. Doctors told me she would eventually walk and talk, maybe even read and write. It would take time, years even. And then she would deteriorate in her teens. But cures were on the horizon. It was hopeful.
I got her home. It was overwhelming. She was g-tube fed, on oxygen via cannula, on a pulse-ox, and on seizure meds. I got into a daily routine and organized our new life. She had lots of appointments and that medical equipment came everywhere with us. I connected online with other parents with kids like Josie and learned so much. Some kids did walk and talk and even read and write. Some aren't there yet but could be later. And some parents had lost their children to this condition... newborns to kids in their 20s.
Clubfoot treatment began- casting and bracing and another minor surgery. Even minor surgeries have concerns due to anesthetic cautions with her condition. The typical clubfoot treatment was horrible for her. Her skin was always tore up and broke down. She wouldn't keep bracing on, just wiggled and kicked out. Currently we have braces for weight baring and do stretches. This isn't standard clubfoot treatment, but she isn't a standard kid.
Therapies were set up. These take up a lot of our time. I enjoy them though because it is a group therapy setting. I have met many wonderful kids and parents this way. When we aren't at therapy, we are doing therapy at home.
She was diagnosed with CVI. It is a vision issue. Her eyes work fine, though she needs glasses. The problem is that her brain doesn't process what she sees properly. It is bad news, but the good news is that she can learn to see. I threw myself into learning how to teach her to see, added a vision therapist, and included new things in our already full daily routine.
There were hospitalizations for illnesses and minor surgeries that aren't always so minor for her. I pack a bag to stay overnight now with every unplanned ER visit.
Seizures, which were under control, became active again. We tried different meds. Some helped, some didn't, and others knocked her out for 22 hours a day. We are still in the midst of figuring this part out. I have questioned all along why my daughter seems so much more severe than other kids with her condition. The vision issue and the seizures are not typical. She doesn't hold her head up yet and doesn't reach for toys or even hold onto toys I put in her hand. I pushed for answers and found the seizures where tied to "Gray Matter Heterotopia." That means when the gray matter of her brain was forming, it didn't expand out like it was meant to and instead there were clumps of gray matter instead. This explains the seizures and probably the severe physical and cognitive issues. That is where we are today, looking for more info on the GMH.
What does all of this mean for Josie? Her delays are probably more likely impairments. Delays imply she could catch up. Impairments leave room for improvements, but there is no catching up. We have no idea what she is capable of and what she understands. She understands many things though her physical issues make it difficult to know just how much. She can do a few signs to communicate, she has said a word here and there, she will follow a few instructions, she definitely knows when I am not present and yells for me to come back, and she is mentally present. She wants to be where the people who love her are and can be bossy without saying a word. She will tell you when she does and doesn't like something, but is pretty laid back most of the time. She can do things, and will do things, but she will never do anything for show just because someone wants to see it.
I will probably touch on more of the above topics as my blog progresses as well as update on how things are currently.
The blog is not only about Josie. It is also about being Josie's mom while being a mom to my other kids, a wife to my husband, a daughter, sister, family member, and friend, and just trying to be me when I can fit it in there.
