Saturday, July 10, 2010

It's been a while

just felt like i needed to add a picture.

Well let me give you the general news...its been a while.

Lovely medicaid has decided to take forever to approve ANYTHING. But low and behold everything has finally been put through the system.

Toby now has AFOs!!!! The short braces we have been praying for! With these braces came twister cables that attach all the way up to a belt on his waist. This has not come without some problems. We ended up with some serious sores and such for a little while, but got the belt readjusted and now we are good to go. God has really protected us from potentially serious issues.

We have yet to start therapy with Selina. However, we did get to go meet her and do an evaluation. Therapy will start this following week. You wont believe what she said at our evaluation. Okay, yes you will, because we have a pretty incredible God. She said that she believes Toby is..and I quote, "An excellent canidate for independant walking." Did you catch that? Let me rephrase. She believes that there is a good posibility that Toby could one day walk without the use his walker and without the use of crutches. She seems to be my type of therapist. She is going to push Toby to his fullest potential. We will be starting therapy 2xs a week instead of just once to try and give him a little bit of a boost in the direction she wants him. We are so thankful to get started on this road regardless of where it takes us.

God has been so good to us and has taken care of so many of our needs and even our wants.

We have yet to hear back from SSI on the 5,000 they are pretty sure we owe them and will begin the process of dealing with royalty checks for Nate's books.

Toby seems to be in a new stage of life right now. He's hit the age where kids directly ask him what is wrong with his legs. It is frustrating and heartbreaking, but we are getting through it and figuring out what the best way to handle this is. One mom actually sent her daughter over to our table at a restraunt to ask us What happened to him? (and yes in those words) I looked at her and said, nothing and turned arond. I really wanted to say, nothing sweety. what happened to your mom that she would think it is appropriate for you to come over and ask us that? Luckily I didnt say that because I'm pretty sure I recognized her from our summer VBS program after the fact. What a great testimony that would have been. At camp this past week someone asked Toby what was wrong with his legs. Toby just shrugged his shoulders and got really quiet. Just typing that makes my heart hurt all over again. I know that most children mean well, and either have never been exposed to a child with special needs so upclose and personal, however it is still hurtful and trying.
Toby is adorable with his walker and we do attract attention wherever we go. Sometimes it is welcome attention like when Elmo comes up and gives him a hug at a show, but sometimes it is unwelcome thats for sure. So we take it as it comes and pray for Gods grace and wisdom. I wonder where I will be with all of this in 6 months. If we will have a specific plan when asked questions, if Toby will begin to ask more specific questions. Or if this is just the way it will be for a while. Looking back on previous posts it seems like nothing ever really stays quite the same.

Well its been a while and I had a lot to catch up on. Have a great weekend


HennHouse said...

Esther-Faith has twister cables, too. She has problems with sores when they slip up under her shirt or something. She wears her HKAFOs for about half the day and spends the other half in her wheelchair. So glad you are finally getting what you need for Toby... he sure is cute!

Schuylar 'Sky' Crist said...

I have read Saturday's blog post and wanted to leave some words of wisdom that I have garnered in almost 34 years as a person with Spina Bifida.

Yes, children are going to ask why Toby is the way he is. There is nothing wrong at all about that. They ought to be asking--you or better yet, Toby! Use that opportunity as a 'teachable moment', for both them and Toby. The more he learns even at his young age, about his disability, the better off he will be when managing expectations as well as answering those sometimes awkward and even complex questions.

The mom, I am pretty sure, simply was responding to her child who probably asked her what happened to him, so she told her she could ask him. Sure such a moment might initially feel uncomfy, but again, it is a great opportunity to teach Toby how to deal with such questions as simply and directly as possible.

He can also learn how to use such moments as a means to witness to others about Christ one day.

As long as he knows you and Nate and Gracie and Milo and God love him as he is, then he will also learn there is nothing 'wrong' with him and that he is fearfully and wonderfully made. He never needs to be ashamed of his walker, or his wheelchair. How he ambulates will never define who he is in Christ (most important)or who he is as a person.

I have been down the road Toby is on. I did the braces and crutches and even walkers. I got my first wheelchair at age 2, even before I could use it on my own. I cannot tell you the joy it has brought me to have inquisitive lil toddlers and babies come up and try to push me around. Just the other day at the dollar theater a lil girl no more than Toby's age tried to climb right up into my lap with a cute lil smile on her face! Kids at that age are so accepting of everyone and everything. It is usually only those (of any age)who were wrongly taught to see assistive devices as negatives who become nasty about them.

*rolls off soapbox*