Challenges Ahead

Today we had Wil's appointment with the neurosurgeon. Here is what we found out.

1. The instability between c1 and c2 (atlanto-axial instability) is "impressive" and will require surgery.

2. There is further concern about atlanto-occipital instability, the space between the base of the skull and c1. X-ray is not clear on this.

3. Wil is being scheduled for a sedated MRI and CT scan which will give more detail on these joints.

4. He will have surgery for AAI (3-4 hour surgery where c1 and c2 will be fused with bone from his own hip or from the bone bank, that decision will be made by the ortho-surgeon). This surgery alone will not limit his range of motion.

5. If he has AOI, which the neurosurgeon seemed to be preparing us for, then that would lengthen the surgery time as they fuse the base of his skull to c1. Rods would also be placed on both sides of his skull to stabilize his neck. This would severely and permanently impact his range of motion. He would essentially have to rotate his torso to look from side to side or up and down.

6. He will be in a neck halo for three months post op. Here is a brief description and a sketch of the halo and vest. (I do not need to tell you how difficult this aspect of this process will be for Wil)

So, our summer plans are being adjusted. We are still a bit stunned that we are really facing this but here we go, off on another journey that will no doubt be as challenging and life changing as so many other experiences we have faced the last few years.

It's going to be hard. I don't want to do it. I don't want to see Wil so limited just as he is starting to take off with his walking. I don't want to be without his tight hugs for three months. I don't want to buy special clothes to accommodate his halo. I don't want to deal with Timothy trying to pull on it. I don't want to feel even more isolated. I don't want to go through the gymnastics that will be required for baths and shampooing. I don't want to see him restricted from the pool and outdoor play - which he loves so much. I just don't want him to go through it. But it is not up to me. And he must go through it. Our family must go through it. And we will get through it. I will take on anything for Wil. And for reasons I do not understand the Lord is having us go through this. I trust Him. He has given me countless reasons to do so..

Our prayer today is that the MRI and CT scan will NOT reveal AOI. That Wil, who loves to roll around with his brothers, climb on play sets, splash in the pool, and his generally all boy, will not be too frustrated or uncomfortable during the three months he is in the halo and that he will remain healthy during that time as well.

We will keep you updated as things get scheduled and we gather more information.

7 comments:

Spitmonkey said...

I saw the image of the halo and my immediate thoughts were "how the heck is a 3-year-old supposed to be a 3-year-old on that??" I'm hoping and praying that he won't need it. *hugs*

Jen said...

You've got a rough summer ahead - and I know you have a lot of people willing to help and jump in, but seriously, if we can help out, let me know - even if it's just having Luke over to play with the kids one day. We're moving in the next few weeks some time - just up the road from Marjorie - but one thing this independent person has learned - life is a lot better when we have each other to help no matter what - so if you're out of your usual options or just need a break - you know who to call, ok?

Mary said...

I see why you don't want to put Wil through this. I can't imagine how difficult it is going to be. My thoughts and prayers are with your family.

Brian and Rose said...

We will be praying for all of you guys! Hang in there!

Michael said...

We will be praying for you guys!

waldenhouse said...

Thank you all so much. Your prayers are greatly appreciated.

Tom said...

Really bummed to read this. I'll be looking for updates and praying for Wil and your family. Super sorry.

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