That's right

My kid loves to read.







We started making bi-weekly trips to the library over the summer. It's been going pretty good-no late fees so far (and those of you who know me know what a big deal that is). He seriously can't get enough of books and the collection he has, while large, just wasn't cutting it anymore. He would literally spend hours if we let him just flipping through all his books. Good thing he can't quite get to all of them or we'd have a real mess on our hands!

New things

School started again and I have one word for that: Boo.

It's been a hard transition. I went from getting things done to not getting anything done at all. And of course I lost time with my precious little guy which is killing me. Especially missing most of his therapy appointments. No more water therapy or hippo for mom. Boo. Thank goodness for my mother-in-law and sister who have been helping us out while Ryan is still working midnights. Otherwise the transition back to work would have been that much more traumatic. So thankful for family!

I have some pictures of Nate doing some new things in his RGOs. We are still waiting on a walker so we haven't been able to really practice walking just yet. We have one ordered and are hoping it arrives soon. For now we have been practicing standing in them. We already had to have some tweaking done (he was leaning to his left) but things seem to be good now. Aside from playing at his sand and water table (mostly just the water part-he is NOT a fan of sand) we have been playing with playdoh at the coffee table, using window markers to draw on the patio doors, standing and looking out the front window and picking out books off the TOP shelf of his bookcase. Oh yes, lots of new things!

Wordless Wednesday

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!

Hippo

We're about to wrap up Nate's first session of hippo therapy, which was actually a generous birthday gift from his grandpa (thanks grandpa!). Everyone always asks me what "hippo" stands for, and I always assumed it had something to do with the hips but after looking it up I found out that it was actually derived from the Greek word "hippos" which means horse. You learn something new every day, right? :) Anyway, Nathan has LOVED his time with his horse, Lickety, which he calls "Licky". His therapist/trainer Sara tells us she is seeing improvement every week in his core strength, balance and speech. And what an awesome experience for him! Although it has hasn't exactly been easy (it's about an hour drive one way) I think it has been well worth it. We are actually considering continuing for the fall session, where Ryan will make the trek since I am *sniff, sniff* returning to work and won't be able to go. Here are some pics of our boy and his horse. Enjoy!

Our little trooper

As I type this, Nate is having an MRI done. It's the second time he's been put under anesthesia in last 4 days. The first was for his eye surgery to correct esotropia (eye crossing). He did really well and only cried a little when he woke up. Both then, and today the nurses complimented him on what a great patient he was. I think the fact that he is the polar opposite of me-laid back and go with the flow, compared to my total and constant state of anxiety-keeps me sane during times like these. Because he is so relaxed I can relax a little, too. A follow-up with the eye doc the day after confirmed that things look great in that department. We have a clinic appointment on Aug. 17th to discuss the results of the MRI with his neuro surgeon, as well as follow-ups with his urologist (more test results) and ortho (we'll be getting his RGOs then!). I'll be sure to post an update once we've digested all that new information. Now, on to some adorable pictures!









I sure am going to miss this little face, and eating cereal together in the mornings, when I return to work next week. Ugh, I hate even typing it! The summer went by too quickly, as it always does!

We've finally decided...

...and ended up with a happy medium. And I finally feel good about it.

Dan the wheel chair man (it has a nice ring to it, doesn't it?) came by earlier this week with two models for Nate to try out. One was teeny tiny and the other was quite big for him.



He got around great in the teeny chair and even protested a little when we took him out of it. It fit him near perfectly...but it just wasn't right. Although the chair would "grow with him" I couldn't see him in that teeny chair, so low to the ground, in a couple years. And this was no easy decision. We hemmed and hawed, and sought out opinions of therapists and other families we knew had already been in our situation. The bottom line is every child is different so you just have t to go with your gut.






The bigger chair was, quite obviously, too big but ultimately it had more of what we were looking for (double push handles, lighter weight). And you had the option of getting light up caster wheels (okay, I'm a grown-up and I thought they were so cool!). Nate may not get to wear those light-up shoes like all the other kids do, but in my opinion he's got something better! Now, keep in mind this is not the actual chair he is getting. The wheels on this particular chair were 24" and we ordered 16" wheels which will bring the height of the chair way down. But not as low as the teeny one. We decided on getting him the wheels with the spokes and the hand rail (like the ones in the pic below) versus the ones on the other chair for two reasons. 1.) I am a bit of a germ-o-phobe and the thought of Nate having to actually push dirty wheels around all the time was enough to freak me out, and 2.) these are the kinds of wheels he will be having for a long time (if a wheel chair is what works best for him down the road) so we thought it best to just start with these. He was able to maneuver both chairs easily, with Dan the wheel chair man even commenting how well he took to it.



So, there you go. Picture it a bit smaller, lower to the ground, in a Cubbie blue color with his name stitched on the back. We are genuinely excited to see him be able to move around independently, at the level of his peers. I've heard that giving kids this new-found sense of freedom can be life changing for them. We're eager to see how Nate feels about it. We're also super eager for it to come in, which we were told could take up to 8 weeks (if not more). As hard as it was to make a decision, I think playing the waiting game will be even harder!

Pure Michigan

We decided to turn a wedding weekend into a family vacation. We are suckers for Michigan, including the radio commercials where Tim Allen's soothing voice never ceases to make us want to load up the car with whatever we can manage to fit and leave our home here in boring Indiana to start a new life in the ever appealing state of Michigan.

Our first stop landed us at Red Robin. Yes, I know they have those in other places, including Indiana, but we were meeting some friends there (I can call them that now that we have actually met in real life!) I came up with the bright idea of trying to meet up with another family that I have been following online (gosh, that sounds so stalker-ish) and who live in Grand Rapids, only about a half hour from where we were staying. We had a great time and talked as only parents of kids with sb can, which was so reassuring and...nice. I don't get to do that very often! The boys sat together and checked each other out while we talked and I learned that Nate and Greyson are a lot alike (and not just in the blonde-haired, blue-eyed way). Leigh and Andy are just awesome, down-to-earth people (not to mention amazing parents) and Greyson is one amazing kid (even if he really likes his personal space). We were so happy to have that time together and are looking forward to getting together with them again.



Next, it was off to Holland where we walked around downtown and checked out the cute shops,







and checked out this little red lighthouse on the lake.





The wind and the water were too much for our little guy, who promptly fell asleep. Did I mention we brought the Governess (her words-not ours) with us? Yes, we selfishly had my mother-in-law act as nanny during our trip. Although, she didn't mind one bit.



And I must say, it worked out fabulously! Ryan and I got to enjoy some time alone together (out for a late drink at an Irish pub while on family vacation-yes, it is possible!) as well as the reception of the wedding we attended kid-free. And our dear Governess got a little vacation out of the deal, too!

Friday afternoon was spent at the beach, where Ryan and I got to frolic in the choppy water like we were kids again. Seriously, I don't think I've laughed like that in a loooong time. We all just loved soaking up the sun and listening to the waves.



Friday night we attended the beautiful wedding of Deanne and Dan and enjoyed time with family. (Can you believe I actually forgot my camera at the hotel during the ceremony?!)





Saturday we spent the day at Sandy Pines. I have lots of fond memories of visiting while growing up. It seems that someone in our family has always had property there and growing up we'd visit and go tubing or skiing. Great, great memories. And this momma tried her luck at skiing for the first time in probably 10 years (with a LOT of coaxing from my cousins) and I'm proud to say...



that I



got up



on the



FIRST TRY!!!

(That's my rock star face I'm making in the last picture!):)

I love that place! So glad Nate had some time there-hopefully he'll get to have some of the same memories that I did growing up. It was a much needed get-away filled with fun, family and friends. I'm pretty sure we've booked Michigan for next years family vacation, too!

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.