victories and losses part 2

Merry Christmas and Happy New Year everyone!

We have been getting used to Levi's new twister cables over the last few weeks, some great milestones happened immediately..one being going from sit to standing for a few seconds, able to ride a tricycle by himself! So thats pretty neat to see from the start. I am hopeful that there will be more progress as his legs are in better alignment giving stability. Its good to see his legs not doing the crazy rotation thingie they were doing before so I am thankful for that.
they are pretty flexible over all, but very bulky still....

you can see them in the picture here, I made some different covers to go over the elastic strap that goes around his leg since the strap is white...seems to be a pretty nice way to make it blend in a little more.
The waist is like a big weight lifting belt made of metal which he doesnt really care for...i put a tee shirt underneath but it bothers him if he leans back a little bit. so its a belt, connected to the cables on the side, straps around his thighs and connects to a pair of shoes...under that he wears his AFO's (braces)
 He had been more compliant than i expected but within the first few days said "mom, get this weird thing off of me!" and "mom, why do i have to wear this big thing" so that was kinda tough and I sure do wish he didnt have to...I think he sees the benefit of wearing them though so he doesnt really fuss about it anymore thankfully or it would break my heart.

One hard thing is using the rest room...here we go through all the effort to get him to be able to go potty on his own and now its an incredible challenge to get the thing off to go to the bathroom....

I need to get the straps changed out for something a little more durable as he is so active and they always come unlatched...

When I would have him out of his walker and in the shopping cart for example I didnt feel like people knew he had a disability (maybe they did...) but now this is a definite obvious thing...so I think that I have grieved some final grief on him "looking normal" or should I say grieving...

He was doing a great job climbing up onto things, but this brings more challenge for that.


I still dont feel like its the fix for everything I hoped for...I am still going to make an appointment with his Dr.whether or not his dr thinks he needs to be seen this year or not. Just kind of feeling a little lost with his next steps at the moment and praying for direction.  No doctor is going to care about his future like I do, but I am praying for doctors that try to, and that the Lord would give me wisdom on where to go for that. Its a hard realization that I am sure every parent has that NO one will tell you how to walk through life with your children, and thankfully too! but sometimes I just need direction.
Lots of people ask me if I am connected with other spina bifida families and the answer is YES! I am so thankful for them, but out of the 4 families we are close with, each of us has a different journey with our kiddos..Spina Bifida is  not a cut and dry diagnosis and can be so different for each person effected. We seemed to have good support with the spina bifida clinic we have been going to, but one thing is that its in Indy, and the other thing is that its going through a lot of change at the moment which means its not as strong of a support at the moment.  Just asking the Lord for continued wisdom with the next steps and knowing that He is faithful.