I know that is such a random title for a blog post, but it sums it all up, so I went with it. Last week Caleb was scheduled to pick up his new AFO's. The clinic we go to has a really nice accessible playground so I decided to take the boys there for some playtime and a quick picnic before Caleb's appointment.
Benjamin cautiously checking out the shaky bridge.
He determined the bridge was safe to cross so he bolted!
(notice Benjamin's t-shirt, it reads: "I rode the Wonderland Express", I got it for him at Morgan's Wonderland since he enjoyed the train so much)
The boys pretending to be train conductors.
Caleb working hard to push up the ramp.
He made it! A victorious grin!
Benjamin standing by the train's smoke stack. This boy loves trains.
After our little picnic in the park we headed in to get Caleb's new Camo AFO's.
They came out really cute, I think he was pretty proud of them too.
So, I covered the "picnic at the playground", and I covered the "new AFO's", now I guess I need to explain the "worried momma" part. I've noticed in recent weeks that Caleb has been struggling to walk a bit. His right foot is turning out more and he just seems more clumsy. He gets fatigue really quickly when walking and complains that his legs are tired even when he hasn't been walking much. His knees are giving out on him and he seems to be supporting himself more with his arms when he walks instead of letting his legs carry his weight. He will walk a few feet and then he wants to sit down. His PT at school noticed it too. I knew his AFO's were too small and I had a lot of hope that these new AFO's would offer him a bit more support. Granted he has only had the new AFO's less than a week but I really don't know if they are helping much. And some days are better than others, some days I think..."well ya know, maybe it's not so bad..." And then other days I know it is bad. Of course I am thinking it is tethered cord symptoms pushing through. Tethered Cord. The thing all of us SB parents know is there but we hope and pray that our child never has any symptoms. I fear Caleb is having symptoms. So I went back and viewed videos of Caleb walking from months ago, even a year ago and I definitely see a decrease in function and strength. And then I started wondering if the 2 UTI's Caleb has had recently could be related to tethered cord?? I hated to make that phone call to the neurosurgeon. I felt like by making that call I was saying without a doubt that Caleb needs surgery. It made it feel more real and I don't want it to be real. But of course there is a process to determining if Caleb is truly showing signs of tethered cord. So, I called. It looks like the next step will be a full MRI (not scheduled yet) so that the neurosurgeon can get a good look. So we will start with that and see where we go from there.
One day at a time.
"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
Isaiah 41:13
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:34
10 comments:
Praying for you guys and sweet Caleb. Your worries make my heart hurt. SB is not easy. We will be thinking of you guys and keeping a close eye on the blog. You're a great mama!!! XO
Many prayers for Caleb. Hopefully no surgery needed!
Prayers for Caleb. Praying for you Cassie....strength to go through the journey. My heart is hurting for you.... ((hugs))
Whatever it is or isn't, it's going to be ok.
This story is so much like mine. I called it denial because I didn't want to face it even though the signs were right in front of me. I was so so so worried about tethered cord surgery but dare I say it, it wasn't that bad. And we have seen improvement. I know it's tough, but like you said just take one day at a time and remember you aren't alone! Hugs!
Oh, my heart just sunk reading that. :( I know that call, I know the urge to crawl back into your bubble and hide. I'll be praying for you guys and knowing that whatever comes of this, Caleb's going to keep on rocking. xo
"Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, I will help you I will uphold you with my righteous right hand." Isaiah 41:10
Cassie, I am praying for you, that you will not fear as you look at what the future might hold, but that you will be comforted by God's promise that He is with you. He will strengthen you as face the unknowns, He will help you as you go through all the extra medical visits, procedures and possible surgery, and He will uphold you through it all.
ditto everybody else. i know the reluctancy to make that call... like as if if we didn't it wouldn't be a REAL possibility. Praying tonight that you will have wisdom (and the docs too). Don't forget to trust your gut. Mama's know when something isn't right. You are a great mom!
Praying for you and Caleb tonight. I too dread that call, and you are right, it's always there in the back of our minds. The responsibility of "reading" the signs is just so overwhelming sometimes. Yes, one day at a time. It's the only way, isn't it? He is in control!
I know that heart-sinking feeling all too well. I hope you are wrong about him needing surgery, but, if you aren't, then I am thankful that we have good doctors to help when things like this happen. What you describe with Caleb is almost exactly what happened with Gage when he had his cysts. We expected tethered cord, too, so it threw us for a loop.
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