Team G

Monday, September 19, 2011

Obstacles but not Barriers

I opened my blog for the first time in months. I was surprised to see that the title said, "Obstacles but not Barriers." Huh. How about that. That's would be a fitting title for this blog as well. So we'll leave it.

I have kept in touch with you all via the occasional email, mostly about Brian. I know you haven't seen pictures of the boys in several months, so I included some family photos at minimum. But mostly this blog is not for pictures. I have a story to share.

It's the story of our amazing Cole.

Cole has been a charismatic kid from day one. I can’t even pinpoint just one reason. Is it the sparkling blue eyes? The tousled blonde hair? The adorable smile? The infectious laugh? The quirky expressions? The way he interacts? The sweet hugs and exaggerated "mwah" kisses?! All of it is perfection. He has a way of making people stop and really look at him, and SMILE. He has an aura about him that we all get caught up in. I don't know what he has...but he just “has it.”

He's so incredibly smart too. He's constantly problem-solving, watching, observing, experimenting, and copying. I like watching his expressions as his little mind works. And work, it does.

Cole is so smart, he's aware that his legs don't work the way he needs them. So he just gets around it. He uses his hands to move his legs when necessary, plus he crawls, cruises, kneels, bear crawls, rolls, and basically does whatever he needs to get the job done. It doesn't bother him. He works hard just to play but generally doesn’t complain.

I believe Cole was gifted all these attributes because of the obstacles, but not barriers, that he will encounter in life.

To catch you up a bit, we started pursuing medical help early this spring after Cole turned 18 months and was still not able to walk. He has been seen by several doctors and child neurologists, and receives formal therapy in our home once a week. We acquired a “Crocodile” gait trainer which he uses daily to practice walking. He had an MRI on his spine in June, which came back negative. The next step from there was an Electromyography Test (EMG) to measure how his nerves send and receive signals. Cole and I headed up to Virginia on Thursday night for his test on Friday. Mom and Dad stayed with Caden, who was sick with the flu at the time. Thank goodness they were here. I’m 30 years old, but I readily admit that I still need my Mommy and Daddy.

So, now that brings us to today. Deep breath…

Cole has been tentatively diagnosed with Spinal Muscular Atrophy. Genetic testing in the next few months will likely confirm this. The testing will also show how severe it is, based on his gene makeup. There’s also a small chance this testing could show up negative.

I know you already have a lot of questions. So do I! I'm up late right now reading. I crave to know more, about what it is, where it came from, and how to treat it. I started this process long ago and actually predicted this exact diagnosis back in June, after the MRI. Of course, I wish I had been wrong. But at that time, I needed to be informed and prepared for whatever came our way. I’m glad I started the process then or the diagnosis might have been even more difficult to take than it already was.

So here’s the basic run-down…Spinal Muscular Atrophy (SMA) is the loss of motor neurons in the spinal cord, and it affects voluntary muscle movement. So, in Cole's case, his legs are very weak, because the nerves just aren't able to send the signals to the muscles to make them move like they should. Sensory is not affected, so he feels us tickle his feet and says "ow" if he scrapes his knees. However, his tendon reflexes are almost nonexistent and he simply cannot move his legs easily. His muscles in his legs also feel very soft, almost like jello. They are atrophied. He has a very awkward gate when he walks and tires and falls frequently from the standing position. He cannot stand unassisted. All these symptoms are a part of the disorder.

However, Cole has NOT exhibited some other symptoms that they often expect. He met all his other motor development milestones on time. His dexterity is impressive, and his arms are strong as an ox. I cannot even do presses, but he does them constantly, daily, to get up stairs, or pull himself up onto chairs. It's astounding! He also does not have any respiratory or breathing problems, and eats like a champ. The doctors did not find any nerve tremors on his tongue, or on his arms. He's never had trouble with his head flopping. His weight gain is normal…well “Geraghty” normal anyway. Tall and wiry.

Given these circumstances, it is hard to discern what level Cole fits. Obviously he is absolutely NOT Level 1, which is the worst possibility. That leaves Level 2 or 3. I personally feel he seems to fit more into 3, which is also called Kugelberg-Welander Disease, and this would be our best option, with the best prognosis. The thing is, these levels are all blurred, because every child, every case, is different. So actually, the definitions can be rather irrelevant. But we still like to be informed as best we can about what we could encounter in the future.

How did he get it? Well, it's a GENETIC disorder. Both Brian and I are carriers, because we inherited it or there was a genetic mutation. One in 40 people are carriers, so chances are, a few of you reading this are also carriers and you don’t even know it. When two carriers have children, the child has a 25% chance of having the disorder, and this occurs about once in every 6,000 births. Caden might be a carrier, and could subsequently pass it on to his children. Unfortunately, our Colebug inherited the disorder.

What is treatment? There is no cure, yet. But there is a lot of amazing research going on, specifically with “fixing” the gene itself. The affected gene is SMN-1 on the number five chromosome. Therefore, they know exactly where the problem is, and they are persistently working to find a way to cure it. There are a few drugs out there that can help if his muscles become hardened, but hopefully with therapy, we can avoid that. And that is the BEST medicine for SMA…lots of therapy. We are also going to acquire some braces for his feet and ankles to help stabilize him and make it easier for him to walk.

So, now what? According to the recorded cases and the "odds," there is a possibility he will never walk. He might need a wheelchair. Even if he does attain walking, it often diminishes in adulthood. According to research, the disorder will likely progress and get worse.

Well, pardon my language, but to h*ll with that. Our new goal in life is to make him the anomaly. We don’t particularly care what the percentages show, or what the standard prognosis is. Our goals remain the same, to help Cole walk. Whatever happens, we will never refer to it as a disability. He's just our sweet boy, and we will help him accomplish whatever he wants. From what I’ve read, his life-span should not be affected and many individuals with SMA have heightened intelligence and lead full, successful lives, with families and careers. The doctors were encouraged that he does so well with his gait trainer. They said, work him. They were not concerned with muscle injury…they said that I can work him as much as he will allow. So, work, we will.

Speaking of, these doctors were top of the line. Cole was seen by three different child neurologists at the Children’s Hospital of the King’s Daughters in Norfolk, VA, including Dr. Ralph Northam, who conducted the EMG test, Dr. Ingrid Loma-Miller, and Dr. Matthew Frank. I felt at home as soon as I walked in the door and they treated us like family. The doctors were so caring, and so incredibly smart. They spent a lot of time with us, testing and checking every possible avenue to make sure they were coming to the right diagnosis. I think Dr. Frank could have written the book on SMA. He was THAT sharp. We will see Dr. Loma again in 4 months. It’s well worth the 4-hour drive. And Tricare actually reimbursed us for our travel expenses, which was wonderful.

How are we doing? Well, the day I found out, I cried. A LOT. I cried because I don't want my son to have any more obstacles in life than he has to. I cried because I want to take this burden from him. I cried because I feel guilt. I cried for all the other children that suffer from their own disorders and diseases. I cried because I wonder why...and I feel like it's not fair.

But now, we accept, we move forward, and we help our little trooper get better. And we don't look back. This is what Brian said in his first email after we heard. "A day of being upset and a lifetime of happiness with Cole. You are right and we will never treat it as a disability and will work hard with him to accomplish whatever he wants to do in life."

Caden did not quite understand what I meant when I told him. He wanted me to hug him though, so he knew, in some form. With time, he will fully grasp the implications, and I think he will be Cole’s number one protector and advocate.

How is Cole? GREAT. In his eyes, life’s problems include needing whatever toy Caden has at any given second, retaining control of the driver's seat of the John Deere Gator, and missing his Daddy. Other than that, he’s happy as can be.

Now, how can YOU help, you ask?! Please continue to pray for Cole and that he can become stronger. Please pray for a cure. And please pray for Brian too. He was the ultimate optimist and champion for Cole from the start, so this diagnosis hit him hard. He did not see it coming. His team mates have been incredibly supportive and his commanding officers have assured him they will help him with whatever he needs. The bottom line is he wishes he was here. He said he wanted so badly to just hug Cole and play with him. I feel helpless here...I cannot even fathom how I would feel 6,000 miles away.

Thank you again for all your prayers and support. Our friends and family are the main reason we not only survive these obstacles, we thrive. We are very blessed.

Now, go research SMA. Your homework is to FIND A CURE.

Wednesday, April 27, 2011

Obstacles but not Barriers

So, I just realized my last post was over 3 months ago. Apparently I took a vacation from blogging. Okay, more like an extended absence! I have thought about it many times, because I really like sharing our stories and photos with you. But, other things took priority and blogging took a backseat. A lot has happened!

My last blog talked a lot about getting back to normal. Well, I've decided normal is overrated and life just isn't meant to be normal. What IS normal anyway?!

First item of business...I want to share updates about our wonderful boys. :)

Our Colebug started physical therapy last month. For those of you that are not aware, Cole is in therapy because he's 21 months but still not walking yet. This developmental delay is significant enough that he needs a little help. He does cruise around furniture and can stand by himself for a few seconds. Aside from that, he primarily crawls. He relies heavily on us when we try to help him walk. His feet turn out and he leans forward. He really tries, but it is obviously difficult for him.

His therapist, Chris, comes to our home and uses our own toys and chairs to do his exercises for one hour a week. The workouts are designed to be play, but force him to use his core muscle and hip flexors. Some of the exercises simply consist of him sitting on a backless stool and reaching to the ground to pick up toys. This act seems simple, but is difficult for Cole. You can tell when he's working because he makes little grunting noises! He tries really hard and the therapist thinks he is such a sweetheart. She always talks about what a good disposition he has. She really seems invested in him and his well being.

His favorite spot in his favorite outfit

Post-bath, one of my favorite cuddle opportunities

Loves his story time

MOOOO. Grandma and Grandpa hooked him up with an entire herd.

With that said, it isn't easy and he does get upset. He knows we're working him and he has ideas for a better way to do things...an EASIER Cole way! Some sessions go better than others. We'll keep plugging away though. We hate seeing Cole upset, yet we know we must push him or he won't improve.

To date, we do feel more muscle in Cole's legs and his core is more stable. I don't think he pulls down quite as hard on my fingers as he used to. However, he still gets upset and scared. He is not confident and shows fear for falling.

The most common question I get is "why"? We do not have a cut-and-dry prognosis yet. They it "low muscle tone." Physical therapy was the first step. His therapist notices improvement as well, but still suspects something neuromuscular may be behind it. They drew blood today and will have results back soon. We have also been referred to a neurologist and they are trying to get him a gate trainer (walker).

I really feel like the ball is rolling now. His medical staff has been supportive. His pediatrician is responsive and processes referrals quickly. His therapist Chris is enthusiastic and engaging. She's invested in him, and she's very proactive in trying to get things done for us. Health insurance authorizations and referrals are a pain, and I wish we could have gotten blood work done long ago. But other than that, I feel confident that he's getting good care.

I know in my heart whatever comes of all this, we'll be okay. But it is an emotional roller coaster at times and I wish the end was in sight soon. It is so hard to see your son struggle. Lots of worrying. I got teary-eyed today when they took the vials of blood. He was so confused and upset...but it was over quickly and he was all smiles again within minutes. He's such a sweet boy. It helped that they gave him a sucker too. They actually offered me one. Maybe I should have taken it. I think I earned one as well!

On that note, none of this seems to have affected his spirits yet, and I am so grateful for that. He's generally happy as can be! He loves to play outside and adores the water. We suspect he will be a swimmer, because he is so comfortable in the water, and cannot wait for bath time. If we utter the word "bath," he immediately heads for the stairs! I am going to try to get him and Caden into swim lessons.

Um, I'm glad we have a fence because they're both naked

Nice hat

You can definitely tell they are brothers

This makes me MELT!

He's up to something

So is this one

They shampoo each other?! Awesome. My job just got easier.

Cole understands everything we say, and has started talking quite a bit also. Frequent words include: mo (more), uh oh, milk, noooooo, yes, hi!, bye, bees (please), up, go away, and probably his favorite, DAD! He absolutely adores his Daddy and just can't get enough of Brian. It's neat to see such a tight bond between them, despite Brian's absence this year.

Cole has also entered a new stage of development as he now recognizes right and wrong. For example, the other day when Brian was bathing him, he kept dumping cups of water on the floor. Brian repeatedly told him no. So Cole finally responded by waving at him and saying, "Go away." As in, please leave the bathroom so I can continue to play my deviant game. Hmmm. Perhaps timeouts will be in store soon...

I'm sure he could not have learned this behavior from his perfect older brother, right?! Riiiiiight. Our persistent Caden is in a stage where he negotiates and repetitively begs, generally for more time playing, or for more snacks. Apparently "no" does not register. He loves to negotiate, "Just one more minute?" It's less funny when you hear your own words in your kids' mouths!

Of course he can be sweet as can be too. He often acts concerned for his brother and wants to know why his "legs don't work." He stroked his face today when they drew blood and told Cole it would be okay. He sometimes helps during the physical therapy sessions, but more often than not, he just wants to DO whatever needs done and play himself, rather than help brother! We try to instill in him that he's the big brother and needs to always love and help Cole. He does give him kisses and hugs but the sharing could have a bit to be desired.

Cole generally adores Caden. He thinks he's pretty much the best thing since sliced bread. So that brotherly bond IS there...as long as they don't want the same toy.

Monkey see monkey do. Those "toys" are candles from my china cabinet. Oh well.

Call the papers...I ALMOST got a normal pic of them both smiling.

Short-lived photo op. Now they're wrestling.

Morning appointment with Curious George

This wasn't bribed or anything.

Caden finishes up his first year of preschool next month and has done awesome! His teacher has absolutely no concerns about him. We're so pleased that we're going to send him to St. Anne's again next year, 3 days a week. He still sometimes wakes up and says he doesn't want to go, but once we're in the car, there's no push back. He asks for double hugs and kisses lately and then goes right inside, no problem. I'm relieved he's done well with school. I think it's really helped build his confidence.

(Im)Patiently waiting for the Easter hunt at preschool

Go go go!

He now holds the world record for finding 13 eggs in 3 seconds.

His class

Caden loves to crack jokes. One of his favorites is to ask, "Who ordered a poo poo planet?" while he pretends to hold a tray like a waiter. I have no idea what this means. Maybe a spin-off from a Spongebob episode? As a result, poop is a favorite item of discussion. Things smell like poop, look like poop, and taste like poop. Terrific. I loathe the word "poop" by the way.

Another favorite: "Knock knock. Who's there? Caden? Caden who? Caden knock knock joke!" Then he laughs deliriously.

He likes to purposely close his eyes for pics

HA! Gotcha.

Now he's really determined

Gotcha again.

Geraghty jam session

Really the only unusual dilemma with Caden is his sleep patterns. He asks frequently if Brian will be home for supper, obviously doubtful. This anxiety derived from the deployment, and has resulted in sleeping issues. At first it was nightly monster fears. I'm sure part of that was legit, but we think the main reason he was upset is because he just didn't want to be alone. I inadvertently fell asleep with him many nights, which was making the problem worse! The lack of sleep wore on both of us. He was accustomed to 11 hours a night, and we could tell it was impacting his behavior during the day.

I'm not sure it really scares monsters but it sure does smell good in here.

Brian's brilliance

Thank goodness, after weeks of long nights, we have gotten him into a good routine again! He snuggles up in bed under his sheet with about 10 stuffed animals, his flashlight, his frog, and his blankies. It's quite a sight, but hey, at least he's sleeping!!! He no longer wakes up multiple times and when he does, we just tell him to go back to sleep, and he does. I just hope that what is soon to come won't mess all this up again.

On that note, let's talk about Brian. I LOVE HAVING MY HUSBAND HOME. This is something a lot of people probably take for granted, but man, I don't! I still get so excited knowing he'll be home for supper every night and weekends are fun again, instead of dreaded. Without doubt, he shares my sentiments. He absolutely adores spending time with the boys, giving them underdogs on the swings, wrestling, playing guns, and snuggling on the couch watching Curious George. Work was going really well too. He started taking French in February, 3 days a week, 7 hours a day, and was really enjoying being in school. The instruction was a 3 to 1 ratio so he was getting a fantastic education in a short period of time. In his free time, he caught up on some house projects, including planting some new grass in the backyard. Weeds be gone! I have enjoyed doing some planting of my own. Michiganbulb.com and Lowes got quite a bit of business from me this spring. Every day I make my rounds and study the new growth. Me=dork.

I drag Caden with me on my planting exploits.

The before

And 4 weeks later...the after. Bermuda grass triumphs!

Brian LOVES getting snuggle time from Colebug

Two scientists, ready to wreak havoc

Please don't blow up the house

Playing war before he goes off to war...

Read that last caption carefully.

Yes, all this fun has come to a screeching halt. Brian has been asked (ordered) to go on a 7-month deployment to Afghanistan, starting this summer.

And all of you are scratching your heads right now, thinking, but, um, didn't he just get home?!

Good memory. Yes, he returned from his last tour just before Christmas. Typically they are alloted 12 months of dwell at his unit, but extenuating circumstances and high demand for his MOS has made this situation unavoidable. Another Marine's screw-ups resulted in his untimely dismissal. The resulting open spot required a competetent and qualified "hero" to step in, rebuilding confidence and team continuity, and all this in a matter of 2 months. It didn't take much deliberation for them to single out Brian.

No, it's not fair. He is highly respected and acknowledged because he does a great job, and that's also why they need him. We're proud, but wish that his "reward" was different! I would have gladly accepted a nice thank you card or maybe a spiffy monetary bonus. Instead, we get a last-minute deployment. YAY! (Heavy sarcasm.)

We found out about this last month, so we've had ample time go through the motions...shock, anger, acceptance. Unfortunately, there's not much positive about it, except that we skipped workups. I'm thankful we didn't have to do that again, because that requires a lot of time away from home prior to the actual deployment itself. However, I still yearn for more time. We NEED more time. He will miss Cole's second birthday again, and Cade's first day of preschool, again. He feels very guilty and thinks he's letting us down. Ironic, since this is in NO way his fault.

The hard fact is, we're a military family and this is party of our duty. When it comes down to it, we did choose this job. No, we wouldn't choose this exact scenario, but still! We're trying to be forward thinking. This time next year, we'll be reunited and not looking at another deployment for a while. By then, there should be many more guys trained and ready to deploy, and they'll want to use Brian for other leadership roles at the command.

Brian has snapped right back into deployment mode, getting everything done as quickly as possible so we can enjoy a few weeks together in June. Luckily, since he did JUST do this, it's all fresh in his mind. He knows his mission, he knows his job. He needs more break and is not ready for the grind of long 18-hour days, but Brian is so strong. He'll be fine.

I'll snap back too. We'll keep busy and visit Iowa this summer and again for Christmas. I suppose I'll find another race or something to keep me running. The deployment revelation did put me in a funk for a couple weeks (plus I had Strep Throat) so my workout regime halted. That's not typical Stephanie behavior. It was a short-lived rut, and now I'm back on track, excited for my first duathlon in 2 weeks. Brian will miss it, but my friend Jessica signed up so I won't be alone. The race consists of a 5K run, 16-mile bike, and another 2-mile run. It will be a new challenge and mostly, I just want to finish! Too bad I got bumped to a new age group.

The Stone Bay Mud Run

We had over 30 Stroller Warriors compete, and we took 9 out of the top 20 placings. Not bad gals, not bad at all! But, um, you do SMELL bad.

Brian was injured so Team Geraghty could not defend their title, but I sure appreciated his support. Plus, he took some awesome muddy photos!

First in my OLD WOMAN division.

Wait, what was that?! Yep, new age group because I turned the big 3-0 back in February. I wasn't sure how I felt about entering a new decade, but my friend Laurie flew in to surprise me, so that overruled any hesitation! We took in some shopping, hit up the beach, ate Mexican, and experienced the wonder of Gus (a country bar just down the road). It was an absolute blast. I was really thankful to have Brian here as well. We've missed so many birthdays together so it was great to have him here for this big one. He made me strawberry shortcake from scratch and took me out for a celebratory drink. It was a memorable birthday. Thanks to all of you that remembered and helped make it even more special!

The hat returns for yet another year

Flowers from Mom and Dad

My delicious cake

I'm so old I needed their help to blow out my candles

Thanks for my special 30th birthday gift Mom and Dad. The new table and chairs are a PERFECT addition to our porch. We enjoy it every day! Now YOU need to come enjoy it. ;)

A birthday with my husband, perhaps the best gift of all

My birthday festivities were soon followed with an anniversary celebration. We welcomed our 7th wedding anniversary on March 20th. Was it really SEVEN years ago that we said I do?! I still remember that incredible day like yesterday. We went on a marriage enrichment retreat last month, mostly for a free day off together, but also to remind ourselves of how lucky we are. Seeing all the hype about the royal wedding makes me a bit wistful. It would be fun to wear that dress again. :)

Our family is doing well, although we did had a scare recently. My Dad had a heart attack 2 weeks ago Friday. They found a blockage on the lower left side and performed surgery the very next morning at Creighton in Omaha. They inserted one stint up through his wrist. He felt good the next day, and within 48 hours, he had walked a full mile up and down the hospital halls. The doctors were pleasantly shocked, but had to sternly impress on him to take it easy! For anyone that knows my Dad, that is going to be a challenge, especially with planting season on the horizon. The family is ready to step in and help though. They'll take care of it.

The doctors could not give an exact reason for the attack. He doesn't have high blood pressure or high cholesterol. He's definitely not obese, nor a smoker. There's no family history. So, much like our medical sitaution with Cole, we're puzzled. He's going to start walking more and cut out the bad foods entirely. Aside from that, we'll just pray this was a strange fluke and it won't happen again. We're sooooo thankful Mom was there and that they acted quickly. God is good.

Well, I'm sure there is lots more to share over the course of 3 months, but this is plenty to digest for now. Thank you for your continued support and I promise at some point my blogs will return to happy, flowery, sarcastic Stephanie rantings. I hope you had an awesome Easter holiday. Brian got 4 1/2 days off and we loved every minute of it! He even took me on an "antiquing" date. Man, only the coolest husbands in the word take their wives antiquing. :)

Time to get messy. (But at least he has on an old shirt. As in, a REALLY old shirt...BRIAN'S t-shirt from childhood! Thanks for saving them, Pam! They're vintage, and way cool.)