About Me
- LauraLew
- I thought starting a blog might be a good way to chronicle our adventures with Meredith and keep people informed. For those that don’t know, Meredith was born June 13th, 2008. She is developmentally delayed, undiagnosed (Edit- received diagnosis 8/19/11 - Atypical Rett Syndrome due to FOXG1 Mutation), and microcephalic. She has a seizure disorder, low muscle tone and Cortical Vision Impairment (CVI). She has made beautiful progress and continues to meet her “inchstones”, though she’s going at it on her own timeline. She is a happy girl who loves to be around people. She laughs a ton and cracks us up every single day. She loves sounds, squeaks, and music and is very vocal! Being parents of a special needs child has taught us so much and challenged us in ways we never could have imagined. We have learned to take none of our gifts for granted and to nourish every unique quality our daughter possesses. She has been an inspiration to many and while it has been challenging to not know what the future holds, we are reminded daily of how amazing Meredith is. Our goal is to never put any limits on what she may be able to do. Meredith will surprise us all!
It's Sunday, February 7th - Superbowl Sunday! I thought starting a blog might be a good way to chronicle our adventures with our little girl and keep people informed. For those that don't know, Meredith is almost 20 months old. She is developmentally delayed, undiagnosed, and microcephalic. She has low muscle tone in her trunk and arms as well as congential esotropia (eyes still turn in a bit at times). She has made beautiful progress and continues to meet her "inchstones", though she's going at it on her own timeline. She is a happy, happy, baby who loves to be around people. She laughs a ton and cracks us up every single day. She loves sounds, squeaks, and music and is very vocal! Being parents of a special needs child has taught us so much and challenged us in ways we never could have imagined. We have learned to take none of our gifts for granted and to nourish every unique quality our daughter possesses. She has been an inspiration to many and while it has been challenging to not know what is to come, we are reminded daily of how amazing Meredith is. This experience has changed our lives so much. We try to live day to day and savor each little moment. Our goal is to never put any limits on what she may be able to do. Meredith will surprise us all!
ReplyDeleteOur latest visits to the ologists included a visit with our Developmental Pediatrician last week who we LOVE. She is amazing. She put us at peace with not having a diagnosis and encouraged us to seek out other local parents who have special needs children. She felt that finding other parents who can relate is really important. She also emphasized the importance of keeping high expectations and never putting any limits on what Meredith may be able to do.
Meredith had a 24 hour EEG done on Monday into Tuesday. Meredith has had 2 other EEG's that both came back normal. Since we now have confirmation that she has had at least one seizure, the Neuro thought it was a good idea to do the 24 hour one. Sometimes kids can be having seizures at night and you wouldn't even know it (a condition called ESES)and this directly impacts development. The good thing is it can be treated. We are not that hopeful that we will find any new developments with this test, but you never know. Meredith was a champ. She wasn't happy about getting all the leads attached to her head, but once that was done, she did great. She and Greg got to pick out a special backpack that would house all her wires and a monitor. So she was very curious about her cheetah backpack that followed her around and we got to keep it after : ) It takes up to 2 weeks for results.
Coming up this week - we go back to see the Orthopedic surgeon to talk about getting Meredith a supine stander, ankle braces (AFO's)to wear when in the stander, and possibly some kind of back brace/support. Stay tuned!
I loved your "debut blog" and will follow closely. Also loved the picture of Meredith in the laundry basket. Give her a kiss from Grandma Donovan
ReplyDeleteThis is a wonderful idea, Laura. Meredith is so beautiful and seems so happy, we can't wait to see her again soon. I think you are such wonderful parents and you are doing such a wonderful job. She is so loved!
ReplyDeleteOh and this laundry basket picture is adorable (by the way, not sure I can fix my name...it's Julie (Hip Mama Greeter)
ReplyDeleteI loved meeting Meredith Saturday...and making her laugh:) She's adorable...I'll be following your blog!
ReplyDeleteWelcome to the blogosphere Laura, love the pic of Meredith in the basket!
ReplyDeleteGreat blog Laura!!! I love all the pictures too!!
ReplyDeleteAndrea
Hi Laura-
ReplyDeleteHow are you? Meredith is absolutely adorable! My mom has been keeping me posted on how she is doing. So great to hear about all of her progress! I'm not sure if you know but, I am an OT. Please let me know if I can do anything to help. Sounds like you are seeing some of the best professionals. I would highly recommend checking out Achievement Products website. They have some great toys that help with all sorts of developmental skills.
Take care, Amy (Thornton) Kucera