Denial

This post has been a long time coming.  And I think it's where I've been hiding most of March and all of April. But it's time to get my head out of the sand.

Late last summer, I wrote about number 6 and how I was terrified of this number.  And I wasn't convinced.  My intuition turned out to be correct and after a couple months, a few tests and no real change our NS agreed that we should hold off on a tethered cord surgery for now.

Fast forward to clinic last week.  Things seemed to be status quo, no real changes.  Nate continues to progress and we were all set to get him into an intensive therapy program that our buddy Grey had been doing had has had great success with (we love you Grey and are so excited for all the progress you are making!) We had brought the paper work for our Ortho to sign off on and knew that this would be something that would greatly benefit him.

Funny how plans change. 
I think in the back of my mind I always knew.

 

(Took these photos weeks before clinic) 

Our ortho agreed that his foot was getting worse, and when I asked her what was the cause she said all signs point to a tethered cord. (Click here if you want to read more about tethered cord.) However she said it wasn't problematic and with the proper bracing he could function just fine with it. 

Then we saw Dr. Bowman, Nate's Neuro Surgeon (or as Nate kept referring to her, Mr. Bowman).  She was right back at it with pushing for a TC surgery.  I was actually sort of annoyed.  But we agreed that he needed another spinal x-ray to check on his scoliosis and to see if it has worsened.  I kept thinking, I thought TC happened when kids were symptomatic.  Showing "red flags".  Nate isn't showing any!  Why does she keep pushing so hard for this? I thought if he was showing some of those "red flags" it would help me feel more at peace about moving forward with the surgery.  Because I was really, really in denial.

Well, the NS's nurse called later that night with the results of his spinal x-ray (still not sure why they didn't have it read while we were there).  And there it was, the reddest flag of all.  His scoliosis had in fact worsened.   By 14 degrees.

The plan is:
-To get an MRI to check his ventricle size (it's always the shunt, the shunt, the shunt until proven otherwise).  Also to check to see if his syrinx (fluid build-up in the spine) had changed.
-Have another CMG to check to see if his bladder function has changed.  We were also in talks with the Urologist to have a deflux surgery this summer.  It's outpatient and minimally invasive.  Not sure how that will fit into all this.
-Follow up with the spinal specialist we saw nearly a year ago.
-Have another "pow-wow" (Dr. Bowman's words, not mine) after we have all the info from the above and decide on a date for surgery.  Probably sometime in June/July.
-Obviously there won't be any Intensive Therapy this summer.  Talked to the coordinator and we'll try for some mini-sessions on his off days from pre-school in the fall.

I just feel like this dark cloud is looming at the end of our summer.  I don't want to see my baby have to go through another surgery.  I don't want them to have to cut his back again.  I think deep down I know that this is what is best.  But on the surface I'm still in denial.

6

Right now i am terrified of this number.

I am still trying to dissect everything that happened at clinic today. It was quite a whirl wind that lasted hours later than it was supposed to (as it always does).

Good things: We got Nate's RGOs and they are so awesome! RGO stands for Reciprocating Gait Orthosis, and they are leg braces that will help aid him in learning to walk. It's been a bit of a long road trying to get them (today was no exception but I will spare you all the long scheduling-conflict story). Our PT comes tomorrow so we will be trying them out for the first time and we're so excited. Pictures to come!

Also, Nate was a ROCK STAR all day. Our first appoint was supposed to be 8:30 but didn't end up happening until much later in the afternoon so we were there until 3:30. We got several comments again from the staff about what a laid-back, easy going, well behaved little boy he is! Aside from having to ask for more diapers because as I have mentioned in previous posts, when it comes to BMs he is all or nothing and today was an ALL day, he was so good and it made our long day go that much smoother.

So back to that dreaded number 6.

The neuro surgeon basically had a conversation with us about his 6th surgery-a detethering. NOT what we wanted to hear. Honestly, I'm still not sold. We only recently started clinic at Children's and between what medical records they actually received (you'd think when you ask a hospital to send ALL medical records, that's what they would do) and what tests we have had done over the summer, they are still trying to "piece things together". Those were our neuro surgeon's words, and not exactly the most comforting. My problem is this: I just have a really hard time agreeing to a surgery that will only put him several steps back when we have been doing nothing but moving forward. Plus, we don't see anything symptomatic-it only shows up on paper or x-rays. Just really hard to grasp. Ryan and I have a lot to talk about. The plan right now is to go through another slew of tests, x-rays and another clinic appointment in 3 months and reassess from there.

So, right now we are going to pray. And ask if you are led, to please pray for wisdom for Nate's doctors, clarity in communicating with us, and peace in trusting in God's plan. And if as you read this, you have a little one who has been through a tethering surgery or are considering having one, we would love some feedback from parents.



Here is an updated pic of Nate's eyes, which are healing nicely. I'm still hoping Lefty will come around a little but overall there is definitely a positive change!

Clinic

Ryan and I decided to make the move from University of Chicago to the spina bifida clinic at Children's Memorial. We did this for a couple of reasons but mostly because trying to arrange appointments with a handful of different specialists and making separate trips to U of C for each was too much. At clinic, Nate will be seen by all the specialists in one day. Yes, that makes for a loooooong day, but only one trip. And the best part is that the doctors work collaboratively with each other-something that seemed to be a chore at U of C.

At Nate's first appointment, he will be having a renal (kidney) ultrasound, a urodynamics test (bladder voiding), a muscle test and will meet with a neuro surgeon, orthopedic surgeon, urologist and physical therapist. I am most anxious about uro (worried about his kidney reflux-praying that is better) and ortho. I firmly believe it is time for Nate to start working on being independently mobile. Our PTs think that Nate is ready and shows appropriate signs for trying some high bracing and a walker. He still struggles bearing weight in his legs but has shown some new strength. Most of all, I have a strong mother's intuition that he is getting more and more frustrated with his inability to just go. And although preschool is a year away (just a year!) I want to be sure he is ready for that-whether it's in braces and a walker or in a wheel chair. That is something else I am going to inquire about at clinic, and I hope we will be ordering one soon. I have heard great things from other moms about how much more their kids are able to do in their chairs-and that they even started talking more and becoming more social and less shy. It's a big step for us, and Nate, but ultimately one that I know is good for us to take. Our clinic appointment is May 18th.



Here is a photo of Nate on his police motorcycle that his wonderful PT, Toni brought for him. He sits up so big in it! Not into the whole rocking thing yet, but we are working on it. Just sitting in it and watching one of his letter or word videos helps him practice strengthening his core. He is getting so strong!