Claire one year ago...before we knew
Claire 2 weeks ago
Today we had an appointment with a Pediatric Neurologist at Primary Children's Hospital and I am happy to report that all was well. I have been trying for about 10 months to get into this Dr. that I had so many people tell me was great and I just want to tell you that he was as good as people told me. If any of you have a need for a pediatric neurosurgeon/neurologist Dr. Filloux is the one to go to!
He spent 45 min with Kent and I looking over all of Claire's MRI's from last year and explained exactly what he thought she would be capable of doing and why certain things were happening. Can I just tell you how great it was to have someone who really knows the field explain to us about our daughter! AMAZING! He told us a couple of things that just brought a smile to both our faces. One is that he thinks she will be able to speak all in good time. He is not 100% sure as nothing is certain with the brain but he thinks that because of the size of the hole the other side of her brain (the side with the language) is probably overworking to compensate so the things that should be coming naturally such as language is just going to take longer. I am happy to wait with the idea that it will come in it's own time. He also said that the part of her brain that controls cognitive thinking such as learning disabilities, reading, etc. is totally fine and that as long as her speech develops then she should be good to go to "regular" school. (I put it in "" because come on, is there ever anything regular?)
Another good thing he told us is that she is at low risk to have seizures as the hole is inside the brain and not on the outside. What a RELIEF!!!! In all it was such a great appointment and I can't say that for every appointment that we have had on this journey but the good ones make it worth all the bad ones.
In all to sum it up this season has been a season of tiny miracles in our life and this appointment and the info we were given would be one I would chalk up on that board of miracles! Merry Christmas everyone! Hope your season has tiny miracles scattered throughout as well.
8 comments:
Maria, that is wonderful news. I don't know if I already told you this, but Fran Filloux is also Jackson's Neurologist. However, we are lucky and now just get to visit with him every other year or so for "maintenance MRI's". :) Filloux's PAC, Sheri, is also wonderful. I know exactly what you mean when you talk of finally being able to get into specialists who "get it". What a blessing. I am so happy for you that your news was so positive. Delayed timetables give such hope and some days I just hold on to that hope so tightly it hurts. Hope has gotten us through the rough spots. So.... here is to blessings and hope. Merry Christmas. Give little C a squeeze for me.
Thats wonderful Maria! Claire is so precious and sweet and I'm so glad you had a better appointment with this doctor.
By the way-- I THOUGHT that was you at the Nutcracker! We almost came down, but we were in the balcony, and you were just leaving, and I wasn't sure it was you.. anyway, next time I will definitely double check!
What great news about Claire! She is such a bright, spirited girl. It's so nice to have some heartening news for Christmas!
Maria, I am so glad that the doctor had good news for you guys. It is always good to have answers rather than have so much confusion and unknown. Claire is such a sweetheart, I am glad that things are looking up. I don't know how you do all that you do. You are amazing. I hope your pregnancy is going well too. I still can't believe you are getting twins. So fun!
Maria--
Wow. I don't know what else to say other than she is definitely a tiny miracle. What a great time to receive such great news and I can't wait to her her chatter on and on in no time! She is such a sweetheart and I hope you continue to see progress with her in the weeks and months ahead. Those pictures are so cute! She has changed to much over the past year!
What wonderful news and relief for you as parents to feel some comfort! We wish you continued tiny miracles in the days, weeks, and months to come!
HI Maria, I am Sarah's friend from K-town. My sister Tiff(friend of Liz's) has a daughter, Libby who had meningitis at 14 months. They were told the Libby we had know was gone due to brain damage the disease caused. Today, although she has hearing loss and struggles with math, you would never know she was different than other kids. Children's brains are amazing and we have seen how they can compensate in amazing ways. We also love good Nero pediatricians! I just wanted to join in the celebration of hope!
Post a Comment