Monday, November 23, 2009


I have mentioned once or twice on here that Rider has had some struggles in using his left hand/arm. Because he was still struggling with it at his 6 month check up, his pediatrician wanted to take a closer look at what might be causing it. Since we were pretty confident it wasn't anything to do with his actual arm, the feeling was that it was neurological. So, they scheduled an MRI for his brain. Last week, I had to starve him (okay - no food for 12 hours isn't starving him, but he sure thought so!), and take him to the children's hospital for an MRI. That was probably one of the hardest things I've ever done as a parent. Holding the poor boy down while they stuck him (3 times) to start his IV. Then watch him completely go limp when they gave him the drugs (which they prepared me for, but still...), and then just leave him in there. Wow! Thankfully he woke up just as quickly as he fell asleep and was happy and ready to eat when I got back to him. Thankfully the MRI was on Thursday, so we were able to get results on Friday - without having to wait through the weekend. So, after several phone calls from me to the drs office, our ped called late Friday evening with the results.

Rider has polymicrogyria (if you are a curious researcher, please know that there are mild and extreme cases, Rider's is very mild) which means that when his brain was developing in the womb, the nerves in the brain that start in the middle and migrate out in a specific pattern got out of sequence. Thankfully, it is only out of sequence in a small area on the right side of his brain, therefore making this finding significant, but not devastating. This on his brain is permanent and will never become worse or get better, and interestingly enough some people live their whole lives with it, and never notice anything until after death an autopsy is performed revealing it.

We met with a (now our) neurologist this afternoon. God has been so faithful in allowing all of this to happen quickly for us - not causing us to wait, which has been so nice! This neurologist had a cancellation this afternoon, and we were able to get right in. I haven't ever tried to get an appointment with a pediatric neurologist, but I would imagine it takes longer than a day. Praise God! Anyway, we felt reassured after talking with him, and have nothing but positive thoughts as we move forward with Rider's treatment....which actually is just to continue what we've already started with therapy. In fact, he's already made huge improvement and is army crawling all over the living room chasing Brice, Chloe, or computer cords. (Maybe I should baby-proof now. :)) He expects Rider's brain to figure out ways to work around the affected area and be able to crawl, walk, run, and chase after his brother. There may be some initial difficulty, but those are things that can be addressed in therapy. We also found out that he will qualify for the state's early intervention program, which means they will come to us to do therapy and it will be at no cost to us...another huge praise!! He also does not believe that his learning, language, etc will be affected by any of this.

So, the questions have been answered as far as why he is behind with his left arm, and really it keeps us in the same situation we were in before we knew; love him just like we were, treat him just like we were, and always expect the best from him. The only difference is that there is a real physical reason to why he was having those struggles and that now we need to watch out for other similar situations to ever arise.

How are we feeling about all this? Well, we know we serve a very big God who cares about Rider very much. We know that God knit Rider together in my womb exactly the way he wanted him to be. We know that miracles happen, and we know that God is our ultimate physician. All that said, we want God to be glorified in this situation. We will be careful to give Him praise when steps forward are made. We also do NOT want to put God into a box, and say, "well, this is what we are stuck with, and Rider may never be able to do (fill in the blank)." No, nothing is impossible with God - nothing! We will believe only for the best for Rider and his development. If you know me, you know that if someone tells me I can't do something, I'm bound and determined to prove them wrong...I am finding that I'm even more so that way with my kids! So watch out! ;) Rider may very well be a left handed pitcher in the majors someday! And no matter what, we trust and know that God has a perfect plan for this sweet boy of ours!

One thing that we would ask that you join us in prayer for...with the way his brain developed, the nerves are a little out of sequence, which could cause seizures. There is no real way to know when/if this may happen. So, please pray that first and foremost, this would not happen. But, I also ask that you pray for us (me especially - Darren is really good about this), that we would not live in fear of what may happen, but trust that God has Rider in His hands, and will take care of him. My prayer is that I am constantly reminded that God has not given us the spirit of fear; but of power, and of love, and of a sound mind.

Thank you for any prayers offered up for our sweet boy and our family!

The 8th Wonder of the World

On our trip to Texas, we took a little time driving back to do something fun. We decided to stop by and take a tour of the new Cowboys stadium. It is as big and impressive as it seems on TV!! Just a little sidenote...if you go, and they tell you it will take an hour to an hour and 15 minutes, plan more for like over 2 hours. There is no way we would have gone on the tour if we had known it would take so long - especially with little ones, but they did great, and I'm glad we were able to see the stadium!

Watch for this guy next time you watch a Cowboys game...not quite as big a deal as Jerry Jones, but don't tell Rider that!

"Artwork" commissioned by Jerry Jones to make it "more than a stadium."
Darren ran through the tunnel pretending to be Tony Romo on game day.

Even the drain covers are stars!

Yep - on the field...Brice started at this endzone and ran all the way to the other one...

...and then took a break. :)

Trip to Texas

Sadly, Darren's grandmother passed away a couple weeks ago. The family had learned that she had just a little time left, and we were hoping to make it to see her at Thanksgiving. Unfortunately, she didn't make it that long. So, instead of a Thanksgiving trip to Texas, we went down there a little early to be with the family for her funeral services. She was an amazing woman - mother to 9 children! That in itself is admirable - especially since there are days I don't think I can make it with 2! Grandma Kuhl - you will be missed by so many!!

We did get to see a lot of family and some friends while we were there. (And got to tour the 8th Wonder of the World - which I will blog about soon!)

Uncle Dee and the kids...we stayed in this great little cozy cabin with Darren's brother's family. It was great to watch the kids play together!
4 Generations of Kuhls

All 9 siblings and Grandpa Kuhl

Brice playing with cousins (or are they second cousins? who cares!)

And to round things out, a visit (short, but sweet) with Becca. Love this girl! Do yourself a favor and check out her blog!
And now, we will be staying put in Tennessee for Thanksgiving. It will be a first without family around, but we have such a gracious church family and have been invited for Thanksgiving dinner by some people from church. And, thank God I still haven't had to cook a turkey! :)

Halloween - Better Late Than Never, Right??

This year's Halloween was a lot of fun since Brice actually knew kind of what was going on. I'm sure he'll drive us crazy in the years to come, but this year was just enough not knowing, mixed with just enough understanding to make it a blast. I ordered their costumes online, and when they came in, I tried to get Brice to try his on. He wanted nothing to do with it! So, when the day of our first* event arrived, we knew we would need to do something. So, we got him to put it back on again and "practice" trick-or-treated (yeah, I just made trick-or-treat into a's my blog, I can do what I want!). Sure enough - the promise of candy if he put on his costume was enough.

*We got good money out of the costumes this year...the boys wore them 4 times!

Here are some pictures of our many Halloween celebrations...

Our MOPS group took the kids to a nursing home to trick-or-treat.

Brice and Addy were a hit. :)

Of course, so were Tigger and Pooh!

This was the best part of that trip...most of the residents were in therapy, so the lady in charge (aka Marylin) wanted to take the kids down there. Brice - being Tigger - "bopped" right in and put a smile on their faces. It brought tears to my eyes (laughter and joy!). He can be such a ham!

Brice getting his face painted at Darren's work was so great. They had lots of fun stuff for the kids...but, with 2 kids to keep up with, we didn't get many pictures. Oh, and I think the camera battery died - explaining why we don't have any pictures of the actual trick-or-treating that took place on Halloween night.
Hey - at least I got this posted before the next holiday, right? :)