Latest on Brinley’s Health
Many of you know we had another MRI done on Brinley’s brain last week. This was a follow-up to the one done in July. Her neurologist wanted to see what has changed over the last 9 months. This would lead us to know if there’s other testing to be done and give an idea of what we’re facing at this point. Today I met with the neurologist and he told us there was very little change in her production of myelin. One part of the brain did have more myelin but not much. Now this can be seen as both good and bad. We obviously would hope that more myelin would develop and put her into a different category than leukodystrophy. The good part is at least she hasn’t lost any. Keeping the strength she has and most of all keeping her well and healthy are the goals to a longer life span for our Brinley. We also visited her physical therapy doctor at the hospital and she decided it was time to start Brinley on some medication for her sensory disorder. She doesn’t like new things touching her (see the Easter basket pictures) and others touching her(especially her hands). She also has major issues with anyone other than Mom or Dad even approaching her. If you’ve been keeping up you know we’ve tried the SPIO suit and the weighted blanket but neither seemed to make a big difference. This medicine will hopefully calm her a bit and make it easier to visit others and see doctors.
And the last bit of news…we’ve decided it’s time for a G tube for Brinley. She’s been struggling with feeding lately. She doesn’t want to eat or she gags when we try and feed her or she eats off of some hard food but then bites into it and chokes. We’re thinking having the G tube will allow her to get her nutrition and take the stress of trying to eat away. Brinley also never got the hang of chewing. This will allow her to use more of her energy to growing stronger physically. She also needs tubes in her ears so we’re hoping to do all of that during the same surgery which will be on May 11. She’s going to be a busy girl this summer! Thanks for all the support and prayers. We really feel them everyday in our lives.
Brinley in her Easter dress. Notice the gigantic feet…
April 13th, 2010 at 10:46 pm
Thanks for the update.
We pray for her daily and for you to have the strength to care for all her needs.
She looks so cute in her Easter Dress.
April 13th, 2010 at 11:24 pm
Thanks so much for posting updates, we think of you guys from time to time and it’s nice to be able to come check in and hear about how things are going for your family. I’m glad to hear that Brinley is doing well and that the results came back with news that she isn’t digressing. I hope that the new treatments will make life happier and easier on you all and allow your family to focus on what will help her the most. She looks cute as could be in her easter dress, that smile is just precious!
April 14th, 2010 at 8:26 pm
WOW! Brinley is such a cutie-pie…must take after her mother.
Thanks for keeping us posted.
April 19th, 2010 at 11:43 pm
Oh my gosh that is the CUTEST! We will be thinking of you and your family and praying all goes as planned.