It has been FOREVER since my last post. I started working on Case's birthday post the first week of April but have been so busy, haven't had time to keep it up! I wanted to give you an update on where we are with Caedyn and all her therapies and milestones. We are so happy with how far our little miracle has come! However, forgive the rant I may start on.....
Caedyn started PT at Mary Free Bed back in January. It was recommended by her therapist, Lura, that she get braces to help with walking. We had her fitted the second week in February. While we waited for them to be custom made, we continued on with therapy every Wednesday religiously. We have seen a vast improvement in her locomotion skills! She has learned how to crawl up and down stairs (the down part is still a little scary for me as she prefers to go head first using her hands rather than turning around), can crawl as fast as any runner and learned to walk, though unstable, on her own the first part of March.
We went to pick up her AFO's (Ankle/Foot Orthotics) April 6 from MFB. They are adorable. I guess they better be for $1600 a pair. We are thankful that our insurance pays for 50% so we have an out of pocket cost of $800. Yes, I said $800. Sigh. Lance, our "fitter" if you will, showed me how they worked and answered any questions I had. He said she would need a size bigger shoe for them to fit and as luck would have it, I just got her size six Nikes for the summer. Excellent, right? No. I got them home, excited to put them on Caedyn so she would be a stable walker by summer. Not so much. I couldn't even get them on Caedyn halfway. I was so discouraged. When Jeff got home, we dropped the boys off at AWANA and headed to the store for shoes. We visited shoe stores all over for two hours finally ending at Stride Rite. Stride Rite has extra wide shoes and is used to fitting for orthotics. A size seven extra wide wasn't going on my child. Talk about frustrated, anger and discouragement! I was more furious that we would likely have to shell out ANOTHER $100 for custom made shoes she would outgrow in three months to go with the $800 orthotics I was told she had to have to walk. While, in our two month wait, she was walking on her own anyway.
I called MFB, explained my frustration and very politely asked that they figure this mess out. Not only did she really not "need" the braces for walking, but they didn't fit and I wasn't about to go to their custom shoe department to spend more money. We met with Lance and he was very nice and empathetic. He told us he couldn't get the shoes on her either, which is rare, and that he would talk to Lura and his boss to see if the orthotics were still warranted and what are next step wer and get back to me within a week. That was over two weeks ago. When I called, apparently, they are waiting on the therapist for a decision. Pretty sure someone forgot about us. Maybe they forgot about our $800 as well? Doubt it.