Love (and food) was in the air

during our Thanksgiving.

Okay, there wasn't really food in the air. But it was in the oven. And then in our bellies.



A kiss for daddy before he had to leave for work. One of the many downsides to having a spouse who works the second shift.



First time my sister was with us for TG in 5 years!



Family picture. Yes, that's Ryan's version of a smile. Or he was just mid-sentence.



Sisters. Bet you couldn't tell.



Nate playing with Uncle Tim. They are playing with a stuffed lamb my mom keeps at her house. That night, I asked Nate what the lamb's name was. He said, "Turkey". Yup, I think that says it all!

Thankful

At our church's Thanksgiving service, they showed a video clip of a couple who were especially thankful. The woman on the clip started talking about how when she was pregnant the doctors told her that there was a chance that her baby would be born with Down Syndrome, and about how she prayed and prayed that the doctors were wrong.

At that moment, I knew we had the same story.

God did not answer those prayers. Her son was born with Down Syndrome. There were times she thought she wouldn't be able to handle it. But 11 years later, she couldn't imagine her life without him.

And then she said something that I think only mothers like she and I can understand. She said that if she could, she wouldn't take it back. Because all the trials and triumphs that her son goes through, make him who he is.



I think about that a lot. Well, really I only think about one thing. And that is that if Nate didn't have spina bifida, if he could walk and run and do all of those typical things that he can't do right now, he simply would not be Nate. He would be somebody else. When that image of him as a "typical" kid enters my mind, the one where he is walking and running around our house doing all the typical things that two year olds do, it's as if I am seeing someone else's child in my home and not mine.



That may be difficult for some to understand or believe. They may think, "what mother wouldn't want to take away something that keeps their child from walking or running or living a "typical" life?" And my answer to that would be that I wouldn't want to take something away from him that makes him who he is. Spina bifida does not define him-but all that he has been through and continues to endure will shape him into the person he is supposed to be. The person God intended him to be.



Of course, that is not to say that I don't worry constantly, have my doubts about whether I am making the right decisions, wonder if I am doing enough and wish that I could take all the pain and the surgeries on myself. But God has a plan. And worrying only steals time away.

It's so easy to get lost inside
a problem that seems so big at the time
it's like a river thats so wide
it swallows you whole
While you sit around thinking about what you can't change
and worrying about all the wrong things
time's flying by
moving so fast
you better make it count 'cause you can't get it back



Sometimes that mountain you've been climbing is just a grain of sand
What you've been up there searching for
forever is in your hands
When you figure out love is all that matters after all
It sure makes everything else
seem so small

~Carrie Underwood

There is no fear in love,
but perfect love casts out fear.

1 John 4:18



Our blessings, they are many. And we just try to take it one blessed day at a time.

Bye bye

crossed eyes.

Eye surgery is scheduled for this Thursday, August 5th.

I guess it was inevitable. Surgery has been on the horizon for over a year since his first appointment. We're lucky we've put it off this long.

In other updates...

We've moved from University of Chicago to Children's Memorial. We made this move hoping that the spina bifida clinic would help to limit the number of trips we would have to make since many things are scheduled on one day. Unfortunately, this hasn't exactly been the case. I will say, however, that our first clinic went well-we loved all three doctors we saw-but getting new doctors always opens the doors to more tests, even if you send over your previous medical records. It would probably take me the rest of the night to type out everything we have done this summer, so I am going to try and condense it as much as possible.

Urology
A VCUG test showed that Nate still has reflux in his L kidney. The doctor was concerned that it doesn't seem to be getting better, even though we are cathing, and mentioned that down the road we may need to look into surgery.

He had a CMG or urodynamics test done to check the pressures in his bladder. He was a rock star through the whole process. His bladder filled to 280cc before he started "leaking". Still haven't met with urologist to follow up with this test yet (see Neuro below).

We are constantly having BM problems. It's either all or nothing, literally. We've had a couple bouts of 7, 8, 9, even 10 days with no BM. Lots of enemas, fruit, and miralax. Happy to report that as of today he's in the "all" category.

Ortho
We finally met with an orthopedic surgeon. We'd gone to Shriners once when he was about 9 months old but he was too young to really come to any conclusions. I was hoping that we could get scripts for RGOs and a wheel chair (although I'd heard that this was sometimes difficult to obtain-doctors aren't always on the same page as the parents) but thankfully, we loved our ortho and she was on the same page with us. Since that clinic visit, Nate has gotten new AFOs, been fitted for RGOs, is getting a lift in one shoe (due to his L hip being displaced, his L leg is about 3/4 inch shorter), and been fitted for a wheel chair. The wheel chair has probably brought me the most anxiety. Not because of the thought of my kid being in a wheel chair (I am honestly genuinely excited for Nate to be able to get around independently) but because we want to make sure we choose the right one. We still haven't technically decided, and we have a rep from the company bringing two different chairs by this week. I'll post updates/videos when we get the RGOs, walker and his chair in. BIG things happening in this department, though!

Neuro
Here's the long and short of it. Ortho found some significant curvature in Nate's spine (44%) and referred us to a spinal specialist. The spinal specialist believed the curvature could be related to tethering and referred us to our Neuro Surgeon. Our Neuro Surgeon wants Nate to have another MRI before we schedule another clinic appointment. We can't get his RGOs or meet with uro to follow up with his urodynamics test until we can make a clinic appointment. I am currently playing phone tag with the SB coordinator about scheduling an MRI. Sigh. And the saga continues. To read more about tethered cord, click here.

Sleep Study/Apnea
Nate also had another sleep study. He was soooooo good about it. He must think it's old news now, since this was his 4th one. Slept like a rock all night! The test showed that he is having bouts of central AND obstructive apneas. The good news is that the oxygen he is on seems to be keeping the episodes from being too severe. So, oxygen it is, indefinitely.

I think I've been avoiding writing this post for a long time. I like posting about the the fun family stuff and not dwelling on the medical stuff. However, if my mission is for this blog to be helpful to families who find themselves in our situation-I must also make it a point to post the medical side of things. This post was an overload, even just for me to type out, so I promise to sneak in a little bit at a time from now on.

Please pray that the surgery goes well Thursday. It's outpatient and should be quick, and although it's Nate's 5th surgery it never gets any easier to hand your baby over to someone who will take them to an OR.

Thankful Thursday

In honor of Thanksgiving being next Thursday, I thought I would blog about some things our little family of three is thankful for.

First and foremost, we are so thankful for our family and friends who are always available with an ear to listen, a shoulder to cry on, or an embrace to make us feel loved. You are our rock and our endless supply of encouragement. For this we are so, so grateful.

I feel truly blessed and thankful for our beautiful home, for the food on our table, and for the means to provide for it.

This year more than ever I am realizing I am thankful for my job and for living in Indiana! My job affords me so many luxuries: ending my work day at 2:30 to be home in time for Ryan so we don't have to use daycare, homework-free evenings (yes, it's good to be an art teacher!), random days, holidays, breaks and summers off, and amazing health insurance. And as our PT left the other day telling us about all the financial woes our corrupt and bankrupt neighbor-state is facing, we are eternally grateful to be living in this fine Hoosier state that, unlike our neighbor to the west, is not dropping therapists in their Early Intervention program like flies because they don't have the money to pay them!



Branching off of that, we are thankful for our three wonderful, amazing therapists Toni, Jane and Nancy who have so patiently and with care helped Nathan to where he is today.

In this media-frenzy, hyped-up world where new "strains" of something seem to be popping up all the time, we are most certainly thankful for our health.

I personally am very grateful for the support I have found via chat rooms and blog pages of other parents of a child with Spina Bifida. No one can understand quite like they do. They are a wealth of information and support (yes Jen, I'm talking about you!)

I attribute all of the above to God and his love for us. I am thankful that I am growing in my faith (even if at a seemingly s-l-o-w rate). I know that God has a plan, and I am learning to trust that He is in control.

What are you thankful for?