We are almost back from Portland and unfortunately it just seems things are continually going downhill... The Neurologist didn't really have any good information for us. Except he has prescribed her another medication to help with her comfort. Other than that it was all bad news. He said we should start seeing a pulmonologist to monitor her lung function because kids with MLD can get chest infections very easily. He also said with her steady decline in speech it's a pretty good indicator the disease is starting to affect the cognitive part (grey matter) of her brain. We were really hoping that it would be further out but what can we do. She is still very happy playing and being engaged she just may not be on the intellectual level we thought she was. We also went to pick up her new orthotics but of course they don't fit because Anabelle is just too stiff. We are going to wait and get them in June when we go in for her botox injections. Hopefully the botox will relax her enough to be able to wear her orthodics and maybe use a stander. Speaking of... We were considering getting her the stander in our last blog but since then we have decided to go with getting a kid kart. It looks like a stroller but is actually a wheelchair. I would attach a picture but I'm blogging from my phone. We as usual are feeling somewhat defeated but I am confident she is recieving excellent care. She has her g-tube consult in a week and I'm very excited about that (never thought I'd be excited for such a thing) but having her tube in will give her and us such a better quality of life. Anabelle is almost 2.5 and I will be calling Make-A-Wish on June 11. I really want to get her MAW done before she loses the chance to enjoy it. Still not sure what we're going to "wish" for but I will keep y'all updated. Also Ronn is working on a fundraiser for Anabelle and the MLD Foundation that will be held on Sept 14th at the Deschutes County Fairgrounds. We are planning on a car show. We don't have a name or any of that just yet but please be praying for a successful outcome. I think that's it for us! Thank you all for your continued support. We couldn't do it without you!!
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
always glad to read the new updates and have good directions for prayer. I loved playing with Anabelle a couple weeks ago! she is very responsive, loves to laugh and hug, and play!
ReplyDeletelove and prayers to you all!
Your posts always give me tingles when I read them. I know how hard and discouraging this all must be for you. I can't begin to imagine.
ReplyDeleteContinuing in prayer for your precious little girl.
ReplyDeleteThe Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing. Zeph 3:17. Thank you for posting Alex. You, Ronn and Missy Annabelle are in my prayers.
ReplyDeleteDear Family,
ReplyDeleteI think of you daily and send all of my love, strength and hugs your way. Miss and love you all!!!