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.

Victories and losses - part1

Oh the amount of life that has gone on since I last posted....and that is true so many laughs, so much personality...so many questions. There is LIFE that has been going on which is just beautiful...
Today I am writing because of just things that I'm trying to wrap my head around and usually this helps me ;)

This summer we have seen tremendous efforts with Levi..two main things were that the Urologists realized that he is able to go potty on his own, and although we still are cathing, we are doing it less and moving in a direction we didnt ever expect with spina bifida (being only 5% of patients can actually do this) so that was a long journey to get those results and we are working on the next steps of all of that in the next few years...

The other thing was that he began walking with his forearm crutches, which was just a tremendous victory  to see! He learned hour to get into his own chair and can pull himself to about anything... All the things that have lead us to these points have been tremendous effort on his part and tremendous leaps of growth and celebration...

In the last few months his PT both at school and the one we see independently and myself, have all noticed a tremendous change in his gait..not in a good way =( not just his gait but his legs just buckling when he stands..and it looks terrible like its gonna hurt something. Right away when we noticed this we decided to get him fitted for twister cables which is something he will wear to keep his feet and legs in alignment, which we have put off due to him being able to manage his legs with just his braces and a stretchy velcro thing called a d-rotation strap on his one leg wheras this is much more involved....  Any time we place an order for any device, the standard wait time is 4-6 weeks....here we are and it may be past 6 weeks at this point ( because they got lost in the mail...) and we have been spending this whole time trying to protect his structure especially his knees from rotating as well as hips so spending a lot less time with practicing walking except walker at school and more time on other strengthening...Lots of swimming, lots of kicks....but its been a while now.  He has days where I see him walking fine again and really straight, and then days like this weekend where I was horrified to watch him take a step and just wanted to pick him up. and ultimately he is pretty discouraged..... ughh..total sadness for me when he is discouraged..

So a few things going through our minds are:

1. could just need the twister cables and then once we focus on weight bearing again we will regain the strength and things are ok

2. Possible spinal cord tethering (we so hope not) because of the rapid change and function loss...we are watching for more signs of this

3.could be just since he has grown a tremendous amount his body is getting used to all the change..

4.

5.

6.


I dont know...just wrecking my brain trying to think what... and like is there something I need to be looking in to more to keep him walking...or is this just what it is and I need to be ok with that? Its so hard to know..because you could have one thing fixed and then Bam your back in business...

Its a very lost feeling..

Also to add to this....Our pediatric ortho guy is...o.k...he is super nice but always is telling me "dont worry, this is just the way it is with spina bifida" and is always finding it amusing that I am concerned with these things and saying "stop worrying about these things" ..I had a clinic apt at riley and he was supposed to see us and wasnt there....then i rescheduled the appointment and they canceled and he said we really dont need to be see until after we figure out if the twister cables work..but that means this has been since February last year that we have been kinda "on our own" on this. Its disheartening and I feel at a loss of if I am doing the right thing. I feel like sometimes Dr's will say "well they have spina bifida, so......" and that means less efforts towards quality of life or addressing concerns like all my answers were given the day he was diagnosed.

I am so thankful for the Pt's and orthotists we have though that are helping us field through these things and help me seek the right things out...Often times I feel like I couldnt do it without their advise and direction. We have been so blessed in those relationships!

So tomorrow is the day....We will slap those things on and pray for the best....it's going to be a big change...its going to be hard to get used to..i'm sad about it...i'm sad about how they look...i'm sad that he needs them...i'm sad that when I pick him up that he always has had "Stuff" he has to wear..and yet thankful for it it. I'm sad because he knows its hard for him...

Can you just pray about this with me? We always need the wisdom to do whats next...I'm hoping we will know in a short time if this is our answer.