Tuesday, February 21, 2012

Still no answers

I feel like I just spent yet another day at the Children's hospital watching my daughter get poked and prodded for nothing. Over the past couple months Sadie has gotten her routine Botox injections, her third brain MRI, a Lumbar puncture, and today an EMG and a NCV test was run on her only to find that they still don't really know why Sadie's muscles are so weak. Our most recent Neurologist isn't convinced that Sadie has Cerebral Palsy. She said there are many things that look like Autism and Cerebral Palsy. She's looking for a metabolical disorder or muscular dystrophy or some other sort of nerve damage. So far every test has come back normal, meaning no one can explain why Sadie is the way she is. My reassurance is that no matter what it is, we are, for the most part, doing all we can do as far as treatment goes. I thought I was okay with just not knowing exactly "why" or "what" is going on with her. I thought I was okay with just helping Sadie have a normal life. I think I was okay because I thought she was doing better. Sometimes I worry that I tackled the "autism" behaviors with full force and maybe didn't help her enough with her physical delays. I wanted so badly to connect with my daughter, to have her communicate with me. I wanted her to be comfortable in her environment and to be able to "deal" with whatever came her way. I have all that now. Mentally she is worlds better but physically she is declining and I don't know how to help her and I get scared that I can't. The Doctors all say I should be so grateful that she can get around in her walker so well even if it's only for part of the day before she's exhausted and ends up in her wheelchair.  I can't even let myself think about how she might never ever skip with friends or jump rope. I just thought we would be so much farther then we are by now.

I told the Neurologist how Sadie's behaviors spike during writing assignments at school. She can spell all her phonics words on the iPad in 2 minutes but if you ask her to write them we have a 5 alarm melt down after the 3rd word. So I asked the Neurologist to write Sadie a recommendation for assistive technology (an iPad) to use during certain assignments at school. I felt a little sheepish asking, after all I WANT Sadie to do everything the other kids can do! Her reply shocked me. She said "Asking Sadie to write anything is like asking her to run a lap. You wouldn't ask her to get out of that walker and run a lap would you? Sadie only needs to know how to write her name. Other then that no one writes anymore. Typing is perfectly acceptable for her. You can't expect her to mentally and physically process that and then learn the lesson." I was taken back just a little. I still don't know quite how I feel about it. When I really think about it I guess writing notes to cute boys and leaving notes in her kids lunches isn't that important if typing helps her get through the day. Maybe some day we will have digital sticky notes. Maybe I should just type her lunch note from now on so that it still feels nostalgic when she's typing lunch notes for her children someday. (Sigh) I'm going to let myself feel sad just tonight. Things are always better tomorrow. I will be ready to brainstorm with her teacher and aids about the iPad at school. If I can help her get through her day without feeling exhausted at every turn, that will be something to be happy about.


  1. I have said it before. I will say it again. There is no better mother for Sweet Sadie then you. You are amazing. She is amazing. Truly a match made in heaven. Things will work out. I have no doubt that whatever potential Sadie has.. she will meet it. And then some. With your help.

    I love you both so much. I really do. She is a miracle in so many ways. And an inspiration to many.
    You are allowed to be sad. You get that. I will be praying for more answers for you. You deserve that too.

    PS. I have digital stickie notes on my computer.... so do you I think.

  2. I didn't know that she got so physically exhausted. No wounder she has melt downs. Being tired suck. Being hungry and tired is the recipe for a melt down.

  3. Wow. It's hard to hear that a seemingly simple task can be so difficult, even next to impossible, for our kiddos. I pretty much avoid thinking about the future because it's so uncertain and makes it hard for me to get through the day. Denial and avoidance can be very positive in certain circumstances! :)

    I think you're doing a great job with Sadie. So go ahead and allow yourself a little time to feel sad - then just keep pushing forward, one day at a time.

  4. You're doing an awesome job, Nicki! It obviously can be very frustrating when the people who should know what's going on, don't have a clue to what is happening. Although, Sadie is pretty darn lucky she has you as a mother. I'm pretty sure she knows that you're fighting for her and for some answers. I hope that one day I can be an amazing mother to my girls like you are to your little ones!

  5. I know a lot of kids in their late teens and early twenties...nobody writes with a pencil anymore! Everyone texts...written notes are seen as antiquated and downright funny! But Yeah...it's a little sad for us as parents.

    Have you had an OT look over her school schedule and her classroom accommodations? Maybe there is some tweaking that can reduce some of her fatigue? It's probably a combo of sensory and activity.


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