Learning As I Go: November 2010

Flashback Friday (Thanksgiving Edition)

Two years ago on Thanksgiving, we all gathered on the couch for a quick snapshot with our new family member. Zoe, our Puggle (beagle/pug mix) had just joined our family.

A sweet little puppy, almost 9 weeks old, sat contently in Jordyn's hand.

Thanksgiving 2008

Jordyn (13) Rylee (5) Carter (1) Zoe (8 weeks)

As photos were taken, there were "Awww, she's so cute!" and "Look at how she just cuddles right up to me!" to be heard.

Fast forward 2 years.

This time, as photos were taken, there were, "ZOE! NO!" and "She's getting hair all over my shirt!" and "She won't sit still!" to be heard.

But, determined to duplicate the moment we'd had 2 years earlier, I clicked away at my camera's shutter.

And this is what we got.

And finally, all smiles... and a death grip around the neck of a rambunctious dog by our 7 year old.

Thanksgiving 2010

Jordyn (15) Rylee (7) Carter (3) Zoe (2)

Let's do another one... (and this time, nothing with 4 legs please.)

"Mom, do you want Zoe to be in our photo with you?"

"Thanks anyway hon, but I'm good."

A few years ago, I would've been disappointed that I didn't get a photo of Zoe sitting all calm and cute, looking at the camera along with everyone else.

But I'm going for "perfectly imperfect" these days, remember?

And these "perfectly imperfect" moments are definitely ones in which I am thankful.

Thanksgiving Math

2 large pieces of paper

+ 8 brand new washable markers

+ 2 creative kids

= 2 works of art showing appreciation for "Rylee, Carter, Jordyn, Mom, Dad and Zoe" (and apparently more of those cookies she draws so well)

and "me, my family, Woody, a rocket, and toys."

Oh, and don't forget to add one very proud, thankful Mom.

The good news...

The clinic that we are getting Rylee's medical records from (for our 2nd opinion on her spine) called to say that they were ready for me to pick up (a few days sooner than they had originally told me.)

The bad news...

There are very important parts missing... you know, like the radiology report from the initial x-ray done.

The good news...

The CD of x-rays and MRI scans was included, and is very nicely labeled.

The bad news...

There are about 30 various folders and files on it, and none of them open.

The good news...

I called the office and the woman on the phone was incredibly kind.

The bad news...

She told me that the radiology report done after the x-ray was done by the pediatric radiologist, and she is apparently located in a different office. Because of that, I need to go in to her office and sign a different release of records. Then, I can wait another 5 days for that office to get those records copied.

The good news...

I am usually a very patient and understanding person.

The bad news...

I'm getting a little frustrated.

Makeover

What do you think?

It's a work in progress. (I promise you won't have to see the same 2 slides of photos at the top over and over... and over and over for very long! I mean, seriously... I took 789 photos in October. I think I can find a few more to add!)

I didn't plan on a new blog look until the end of the year. You know, I'm the type of person who would wait until January 1, 2011 to show off a whole new look!

Starting a new look at an illogical time (November 18... well, I guess it's now the 19th) just wouldn't be me.

But, I did it.

Wow. I even surprise myself sometimes.

Keep watching! The makeover has just begun!

Oh, and since it just isn't right to post something without photos (you know, since I have 789 to choose from) here are a few of the kids showing off their self-portraits.

Rylee drew herself with a friend... I could be wrong, but I think they are sharing a cookie.

And Carter... well, if that portrait doesn't make you smile, not sure what will! (And you can't help but think about how darn handy it would be to have that many arms at times.)

What's In a Name?

Earlier this year, I shared Rylee's journey to name-writing.

Now, it's someone else's turn.

******

Carter started out loving crayons like most kids do...

February 2008

10 months old

He was actually more of a painting kind of guy...

July 2008

1 year 3 months

and no matter what (or where) he painted

June 2009

2 years 2 months

he enjoyed it!

June 2010

3 years 2 months

He did like showing his creativity in other ways,

June 2010

3 years 2 months

but it wasn't until this summer that he really embraced creativity with drawing & writing.

(gotta love the tongue)

June 2010

3 years 2 months

And though he still enjoys painting...

September 2010

3 years 5 months

these days he is all about WRITING!

After a very short-lived phase of tracing the letters in his name that I wrote, he took off.

(writing on Rylee's birthday card... upside down)

Now, if you ask him, he's got...

"a 'C'..... that one letter...... an 'r'...... a 't'....... an 'over, up and around'..... and an 'r'."

Sometimes the "t" sneaks in front of the 1st "r", and the "over, up and around" is often backward, but all the letters are there.

November 2010

3 years 7 months

And above those letters is a smiling, marker-covered little boy, proud to show off his name!

Pursuing a 2nd Opinion

After our appointment with the local pediatric orthopedic surgeon, we made the decision to seek a 2nd opinion on Rylee's neck/spine. Thanks to a friend from Tennessee who's daughter underwent AAI/AOI spine fusion surgery several years ago, she made a recommendation. She (along with others I'd talked with) said that the Shriner's Hospital in Philadelphia was the place to go for this. The surgeon there was an expert and dealt with AAI/AOI frequently.

So, yesterday morning I dialed the number she'd given me, assuming I would be connected with a receptionist. I would do my best to make our long story short... the receptionist would do her best to take notes to pass along to the surgeon's nurse, who would then give me a call back several days later. Making the connection might take awhile...

You can imagine how surprised I was to hear the voicemail of the surgeon himself! Man, this friend of mine truly hooked me up! (Thanks Renee!)

Not knowing how long a message the voicemail would allow, I spoke quickly. (I'm famous for having to call people back to finish my message, and I didn't really want to have to do that this time!) I tried to summarize our story, ending it all with the request that he be our 2nd opinion.

(We were hoping to send Rylee's x-rays and MRI scans out there for review...)

I assumed that it would be a day or more before he called back, but the rest of the day, each time my cell phone rang, I glanced around to see if it was an appropriate time to talk, if it were to be the surgeon.

Ring... ring. (Glancing around... "hmmm, I'm driving in the car, but I could pull over into the IHOP parking lot and try to keep the kids quiet by giving them this 1/2 eaten bag of popcorn from yesterday.)

"Hello?" (not him)

Ring... ring. (Glancing around... "in the bathroom, going to the bathroom... well, not ideal but probably could get away with it if I don't flush.)

"Hello?" (not him)

Ring... ring. (Glancing around... in my office, kids are playing in their rooms... this might work!)

"Hello?" (HIM!)

What a kind and generous man! We talked for nearly 20 minutes. I gave him the low-down, and he listened. I mean really listened... not like a half-listen sort of "let's just appease this talkative South Dakota woman to get her off the phone and get on with my busy life." Renee said he was wonderful, and she was absolutely right! He said he would be more than happy to look over Rylee's x-rays and MRI scans. He gave me his assistant's address and said that he would look them over within a day or two of receiving them and give me a call back with his thoughts/recommendations. It was such a positive phone call, and I was grateful to have had a friend recommend him. (Thanks again Renee... I owe ya!)

*****

And so you'd think that would be the latest, but it's not.

*****

This morning, (during a fun watercolor project with the kids - gotta love no-school days!) the phone rang. It was the surgeon from here in town. He said that each Wednesday, he and some colleagues get together to discuss cases, etc. Yesterday, he showed Rylee's x-rays/MRI scans to the group to see what everyone's thoughts were. The consensus among the group was that Rylee does have AOI at extreme flexion and extension. In their opinion, there isn't instability until she really flexes her neck way up high/back or down low. Their thoughts are that it showed up on the x-rays because she did put her head way up high and way down low herself, but that for the MRI scans, her neck wasn't extended or flexed as much as during the x-rays.

Their recommendation was to limit some physical activity (gymnastics, trampolines, etc.) and check her again next fall with another x-ray.

*sigh*

What this did was reassure us that AOI is apparently very difficult to determine/diagnose, and that following through with a 2nd opinion from the surgeon at Shriner's in Philadelphia who has much more experience with this is definitely the right thing to do!

Thanks for everyone's continued thoughts as we work through this!

We just continue to picture Rylee as the healthy, happy, active little seven-year-old she is!

Rylee's MRI Results

We met this morning with Rylee's Pediatric Orthopedic Surgeon to go over the results of her MRI.

I think it's safe to say we're "cautiously optimistic yet perplexed."

The surgeon said that on the MRI, he sees "no radical instability." He read us the report from the neuroradiologist, who also looked over the MRI, and his notes do, in fact, rule out AAI. However, there was nothing in the notes that addressed the AOI, which is what we were initially told Rylee had. The surgeon said he would follow up with the neuroradiologist on that.

The surgeon did say that "x-rays can be misleading" and that MRI's were much more reliable. However, he did also say that when positioning Rylee's head for the MRI, he may not have extended or flexed her neck as much as she herself during her x-ray, which may have lead to the inconsistencies between the x-ray and MRI. He said that he would like to go back to the Pediatric Radiologist who initially read the x-ray to see if she can give an explanation as to the discrepancy between the x-ray and MRI.

The surgeon told us shortly after Rylee's MRI that he saw "definite slippage" when glancing at the scan. We aren't sure if after reviewing the scan with other docs they came to a different conclusion? (Of course I thought of this after our appointment, so I didn't ask the surgeon this question...)

So, where does this leave us?

I'm going with my gut. My gut tells me that we need a 2nd opinion.

While I am THRILLED to hear that this surgeon doesn't see any instability, I am not feeling confident as to the inconsistencies. This surgeon told us that he does not deal with AAI/AOI often... so to get Rylee's x-rays and MRI scans into the hands of doctors who do seems to be a very logical next step.

I will be making some calls and keeping you updated! We appreciate your continued thoughts as we work through this...

(Hey, maybe all of the thoughts and prayers from you guys worked! So, keep sending them... we hope the 2nd opinion doctor says, "nope, nothing there!" and we can cross this off our list and move on!!)

What Do You Do...

when you're at the hospital, waiting for the doctor to take "pictures of your neck?"

Well, when you're six,

you dig your mom's little camera out of her purse

and take pictures of yourself.

Rylee's MRI Update

Just wanted to update everyone on Rylee's MRI this morning...

First of all, thank you to EVERYONE who called, sent emails, texts, and left Facebook messages with your thoughts! We definitely felt them and feel so fortunate to have such love surrounding us!

Everything went pretty well... it's always hard to see your child go under anesthesia, but you just keep reminding yourself it's SO much better than having them scared and frantic about what's happening. Besides, there was no way Rylee would've been able to hold still for this... it took much longer than the average MRI because they had very exact positions they wanted her head/neck in... having her awake would've been torture (and most likely would have resulted in poor pictures.)

The Pediatric Orthopedic Surgeon and Pediatric Radiologist were both there to be sure they got the pictures/views/angles they needed. (We also lined up some annual blood work to be done after she was under... pokes are never fun, and especially difficult for Rylee, so doing it today worked out well and saved us some hurt and tears.)

The surgeon told us after everything was done that he had glanced up at the screen (or whatever it is they see things on) a few times and "didn't see major pressure on the spinal cord," but that there is "definitely slippage" so he will take some time and review the results with some other doctors.

Of course, it's really good news to hear there isn't "major pressure"... though we aren't surprised by that too much. (If there were "major pressure" we would've seen symptoms of this before now.) But hey, we'll take the good news!

I can't say that I wasn't temped to bribe the surgeon to stay late tonight and review the results... (but I didn't think the $5 bill in my pocket would probably get me anything but a laugh.)

So, the plan is to... wait.

We are told we'll get a call "early next week" with more descriptive results. I am wondering if my idea of "early next week" (Monday morning by noon) is the same as the surgeon's idea of "early next week" (oh, maybe by Wednesday?) I know waiting is going to be difficult, but celebrating Rylee's birthday this weekend will definitely help!

What I am focusing on now is wisdom. I have a feeling that the decision to repair surgically or not may not be clear-cut. So, if there is anything you can do for us, please send good thoughts that Jeremy and I, with the guidance from Rylee's doctors, will be able to make the right decision for Rylee.

We will update next week when we find out the MRI results.

Again, thanks to everyone for your support, encouragement, prayers, friendship, and love!

Now, I'm off to cuddle a very brave little girl!