Hey everyone- so here is my attempt at a blog- I find myself reading other's witty and informative blog post about how interesting their current lives are and though I am not all that witty I can use this as a way to let everyone in on some things which go on in our sometimes crazy- some days boring life. Please forgive me as I am not the best writer and will often have misspelled words (even with spell check) and may not use proper grammar. As soon as I figure this blogging stuff out I will post some pictures of her milestones.
So you may ask- what is with the title "learning to dance in the rain" - well it stems from my favorite quote "Life is not about waiting for the storm to pass, but about learning to dance in the rain." I found this quote approximately 3 years ago while I going through treatment for Hodgkin's Lymphoma. Although it was one of the toughest struggles of my life, thinking of this quote helps me think of the positives going on at the time. Life is full of numerous struggles- and sometimes I feel as if I was given more than my fair share. I also have to admit I have been given so many blessings in return. I have many supportive family and friends, an amazing husband and the most beautiful daughter ever.
The last year has been a huge roller coaster ride for my family and me. I had an amazing pregnancy and on August 3rd, 2011 we welcomed our amazing daughter Taygen. Here it is the end of March and we are about to celebrate her 8 month birthday. Eight months has flown by ridiculously fast and she has grown and changed in so many ways. I am often asked about Taygen's conditions and how we received the diagnosis- here is a brief history:
When Taygen was around 2 months old we started noticing her left eye would set in- looked somewhat like a lazy eye. With lazy eye being on both sides of our family we mentioned our concerns to her pediatrician hoping that an earlier diagnosis would result in early treatment to fix what was wrong. The pediatrician assured us that it was normal for her eyes to not be fully in sync until around 4 months of age. We also notice some jumping or rapid movements of the eyes so she decided to send us to an opthamologist. A few weeks later the opthamologist dilated and examined Taygen's eyes and we were told that it was probably just some extra skin on one eye making it look like it was set in and would appear more normal as she grew. This news was reassuring until her 4 month check up at the pediatricians office where we were talking to the doctor about her recent developmental milestone achievements. I shared a concern that although she is rolling over, holding her head well, bearing weight on her legs she still didn't seem to be focusing on people or toys and hadn't been reaching to grab toys. The doctor examined Taygen and agreed with our concerns but was confident with the Opthamologist's exam and decided the next step was to see a pediatric neurologist.
We saw a neurologist in Burlington the following Monday and was sent for a MRI that Thursday. The next day I received a phone call with a diagnosis- Taygen has 2 rare conditions of the brain- Schizencephaly and Polymicrogyria. Schizencephaly means that she has a cleft on one side of her brain and Polymicrogyria means that she has too many folds in the brain. Although it is unknown what has caused the conditions we have had genetic testing which came back normal and she was tested for a virus which is commonly linked and that also came back negative.
We also met with another pediatric opthamologist who believes Taygen has Cortical Visual Impairment caused from the brain abnormalities- This means that there is nothing wrong with her eyes or optic nerve- but with how the brain is processing what she sees.
We have since traveled to Boston to meet with a neurologist at Children's Hospital of Boston where they are studying these conditions. Also just last week we met with the nationwide leading doctor of Polymicrogyria. He was in Burlington for a seminar for their doctors and residents and he agreed to evaluate Taygen in front of everyone to teach them about neurological diseases. He was optimistic about Taygen's abilities and said although she will have some struggles with coordination as one side of her brain is damaged (only about 15% of her total brain is affected)- meaning she will have delays with crawling and walking but he sees no reason why she would not be able to walk or talk. He also predicts that she will have some learning disabilities but otherwise should lead a mostly "normal" life. We will continue working with physical therapy, occupational therapy, meet with a special needs teacher and hopefully soon a vision therapist weekly. If anyone has any information on resources that may be beneficial for Taygen please let us know.
Aside from doctor appointments and therapy appointments we are in the process of buying a new house! Many posts to follow on new home renovations, our dogs (our other 2 children), adorable baby pictures and health updates!
