Have To Share This

WATCH this video! So inspirational!

http://www.youtube.com/watch?v=vDaf3fe9NT0

Oprah: "What do you think is the biggest misconception about people with disabilities?"



Zach Anner: "That they they are helpless and that their personalities are defined by their disabilities...I am so many things before I am a person in a wheel chair. Get to know the person. The chair is incidental."



Please, God, help us raise Davis to think this way about himself.

Follow-Up

We saw Dr. Boydston yesterday for Davis' 6 week post-op visit. He thinks Davis looks great; 'exactly where I expect him to be at this point'. We just need to be doing more stretching exercises with him, especially at his ankles. And he wants him to continue to 'not walk' for another 3 weeks.

Potty update: Davis has wet the bed for the third night in a row. I'm taking full blame for this because I'm a mom and that's what I do I haven't been waking him up at 5 a.m. to go pee. And I haven't been super strict about the 'no liquids after 6 p.m.' rule. We went to dinner with my family last night and some friends had us over the night before. But I'm back on track now. :) On the bright side, it's giving him great lessons on what happens when he pees on his 'duh'. He's doing so great during the day, though!!! He's telling me that he needs to go, pooping every day, and hasn't had any accidents!

My Boogie...

Have a great weekend!!!

Movie, Underwear, A Bond, Steps

On Thursday night, two girlfriends and I left our children home with the hubbys and enjoyed an evening of pedis and a movie. Just Go With It. Just go see it! Probably one of the top 5 funniest movies I've ever seen. Hilarious. Wanna see it again! AND!!! Dave Matthews is in it!



And here's what us Nunleys were up to all weekend...



I found this 'guaranteed to work' 3 day potty training program online and thought I'd give it a shot. It only cost $24 and seemed really credible. So, we set aside this past weekend to see if we could get this 4 and a half year old of ours potty trained.



The program requires you to set aside 3 consecutive days where you do nothing but stare at your child's lower half. Basically, you throw away all pull ups and diapers, focus on constant positive reinforcement and praise, and repeat the phrases 'Be sure to tell me when you need to go pee or poop, ok?' and 'Be sure to keep your underwear clean and dry, ok?' about 87,000 times a day (and night). That's right. I slept on D's floor for 3 nights and every time he moved, I had to repeat these mantras to him. You're never supposed to put the child on the potty to 'try' and go and you must catch EVERY single accident. You only put them on the potty when they tell you they need to go and during an accident. It was so unbelievably exhausting, but we were so dedicated to giving this 100% effort.



Justin took care of Reese all weekend so they're super tight now. And, I have to say, there's pretty much nothing cuter in the whole entire world.

"What did you just say to me?"

So, did it work???


It's Tuesday now and since we started this on Friday, Davis has only wet the bed once. And he hasn't had an accident since Sunday. He's not 100% there yet, but he'll never wear another pull up or diaper again! And that is a miracle!!!


OH! And my Underwear Wearing Son gave me a nice surprise yesterday when he said this, "Momma, my boo boo is all gone so I can walk now!"

Visit At School

We stopped by school today so Davis could say 'hello' to all of his friends and pick up a cubby full of paperwork, Valentine's goodies, and a special 'get well' gift from one of his classmates. All the kids were so excited and happy to see Davis! They all came running over and asked him a million questions. Davis told them that he went to the hospital and got a boo-boo and now he has a cool chair. He played on the playground for a few minutes and got really sad when it was time to go! But we plan on sending him back on March 7th!

We have something very important planned for this weekend. It'll require us to be indoors for the next 3 days. Stay tuned...

Monster Trucks and Monster Sister

Davis, Justin, and I had a blast at the Monster Jam over the weekend! It was so nice to spend a special evening out with our little man!

Update on Baby Sister...she's rolling over like it's her job. We'll put her down somewhere and have no idea what position she'll be in when we look at her again. She started sleeping in her room about a week ago...I know, I know...I waited a really long time to do this, but she's my last baby, people!!! She is gigantic and loves baby food, especially pears. She's already wearing 12 month clothes and we keep warning Davis that she's going to be wailing on him soon if he doesn't start eating more. I'm having serious 'blues' about all this baby growing up crap.

HOPE EVERYONE HAD A WONDERFUL VALENTINE'S DAY!

He's Better Than The Best

Once again, I panicked. Why, after 4 weeks, is Davis still not walking on his own???

I called Scottish Rite and spoke to one of their on-site PT's. I let her know that my son had the Rhizotomy procedure done 4 weeks ago and is still not walking independently. I asked if she was familiar with that particular operation and its recovery process and whether or not I should be concerned. She told me that he shouldn't be walking for at least 8-12 weeks. His muscles are so weak right now that if he was able to walk, he'd quickly fall back into his old walking patterns and start using the wrong strong muscles to compensate. She told me that, upon discharge from the hospital, we should have been given a wheel chair and that that should be his primary means of getting around right now. It'll take about 2-3 months of intensive therapy to retrain and strengthen his hip and leg muscles before he'll even be able to walk 'the right way'. He can practice walking in therapy, that's it.

I know you're wondering 'why weren't they given this information before surgery?' Well, we were. Kind of. I remember them telling me that he shouldn't even try to walk for the first month. But I forgetted. Oops. And I was comparing him to other kids who were walking within a week or two. It sounds like it's actually a blessing, though, that Davis is too weak to walk because when we were practicing with him at home we could see how what the therapist said, totally made sense.

I relayed all this information to Davis' wonderful and amazing therapists and they immediately began researching vendors that loan out wheel chairs. Within two days, this bad boy was at our front door step...

Davis LOVES it! And Justin's having lots of fun with it, also!

Dadda, PaPow, and Davis went 4-wheeling and rabbit hunting earlier this week...

And we had a wonderful, surprise visit from Pop and Busha...

Hope everyone has a wonderful weekend! We're taking Davis to Monster Jam at the Dome tomorrow night and I...CAN'T...WAIT!

Three Weeks Post-Op

See his video progress here.


Davis' therapists are really pleased with the progress he's already made. He's doing such a great job at staying motivated and positive during therapy and his at-home exercises...despite what the end of the video shows!

OH! And I am so excited to announce that our family is growing!!! My little bro got engaged to his long-time girlfriend, Elle! I love her all the days and can't wait to call her my 'sister'! AND...Brother asked Davis to be his 'Best Man'! Can't wait!

Enjoying our beautiful weekend...

It's The Simple Things...

Criss cross, apple sauce...

His hips and legs were always too tight for him to comfortably sit this way and still be able to play...not now, though!

Two Weeks Post-Op

Visible results makes Momma a happy girl! Davis started standing independently today! Woo Hoo!!! Proof that he's regaining strength!

See how Davis' knees turn inward when he moves in this video??? Well, I was encouraging him to take steps today and noticed this same knee-turning-in pattern; only in a much 'looser' fashion. I brought it up in therapy today and, after witnessing the same thing, his therapists explained to me why he does this...to compensate for his weak hips. He's 'flinging' his legs forward to walk instead of using his hips to help him move. They decided it would be best if Davis didn't do any walking until we can get his hips really strong. We want him to slowly learn how to walk the 'right' way instead of quickly walk the wrong way.

And, Danielle, your wish is my command!

Staples, Therapy, Pudding, and Sister

Davis got his staples removed this morning! Having had a c-section only 4 months ago, I can vividly recall how painful this is. It took all 3 of us (nurse, Justin, and I) to pin his poor self down while she plucked all 26 staples out. Yikes.

The nurse thought his incision site looked great and cleared him for physical therapy.

So...to therapy we went!

His PT, Kelly, and two other therapists at the clinic will be working together to help rebuild Davis' strength and retrain his mind and muscles to walk 'the right way'! We're in for a long, rigorous ride, but the results should be so worth it!

Miss Kelly is measuring his range...

My pal, Stobbe, brought Davis a tasty treat today...homemade chocolate pudding!!! He's soooo excited to dive right into it after dinner tonight! Thanks, bro! So thoughtful!

And...appearing on Davis' blog for the first time, I present to you, the prettiest and sweetest Baby Sister EVER!!!

So This Is What Outside Looks Like? I Almost Forgot.

Finally...some time away from the house. Some time away from caring for a recovering child. Some time for me. I needed it. For my sanity.

Reese and I went to the mall yesterday afternoon while Justin stayed home with Davis. It was so nice to just walk around, interact with the public, eat some delicious pretzels with melted cheese, spend some money! And Reese is such a good shopping buddy! So content and smiley and pretty!

Besides the couple of hours I was able to get away to go try on Bridesmaid's dresses for Mandy on Monday, I had been locked behind closed doors, taking care of my Davis, for 9 days. Nine straight days! I hadn't put on a pair of jeans, driven a car, wore mascara in over a week! Yucky.

And I have to hand it to Justin...he's been so helpful and involved with all of this. I couldn't do it without him! (He reads the blog now, so I had to throw him a little shout out!) Love you Husband!

Worry Sets In

I knew this was gonna happen...A small amount of panic entered my body yesterday. I started thinking 'what if they messed up?' 'what if they removed too much spasticity and now he's too weak?' 'what if he'll never walk again?' I had these unrealistic expectations and, when they weren't met, I began to worry. Also, I spoke to other mothers whose children were independent walkers before SDR and were back up and walking again after only a week of recovery. So I called the nurse. "Should I be worried because I was expecting Davis to be able to walk again at this point and he can't even stand up on his own." "No. Not at all." She assured me that his high level of weakness at this point is to be expected given the amount of tone that the doctor removed. Once he starts intensive therapy next week we should see his progress really take off. I also vomited some sentences about how his incision is much larger than we thought it was going to be. The nurse told me (for the second time!) that the doctor had to go up higher on the spine once he found so much spasticity in his back.

I breathed a sigh of relief. My heart rate normalized. All is well. Just stay patient, Andrea. This is gonna take time. Time. Time. Time.

Phone Follow-Up

Per her instructions, I called Dr. Boydston's nurse today to give her an update on Davis' condition.

Do you see any CSF leaking from the site? No.

Do you see any redness or swelling? No.

How is his pain level? Seems to be low.

When you do your routine exercises with him, are you getting him up to walk around? Yes.

Is he able to walk indepentently or does he need your assistance? He needs our full assistance.

Ok, let me talk to Dr. Boydston and see if he thinks Davis is ready to progress on to more activities. I'll call you back. Ok.

Later...

Dr. Boydston wants to keep Davis' schedule as is until after you guys meet with us next Monday. He can continue to sit up for meals. You can allow 30 minutes in between each meal for sitting up time, as well. Increase that time by 30 minutes each day, as tolerated. And continue to get him up and walk around with him 3 times a day. Alrighty...

First Visitor

Mandy,

Thank you soooo much for coming to see me yesterday! I love the video game you gave me! It's so awesome!

Love,

Davis

What A Morning!

Davis officially can't be left alone for one second right now. Let me get my brush out and paint you a pretty little picture...

Reese and I slept in the bedroom last night, while Justin and Davis camped out in the living room. Justin left for work around 6:30 this morning (tear, cry, boo-hoo, I'm all alone). Davis was still sleeping, so I laid back down until about 7 am. I got up, gave Davis his breakfast (granola bar and milk), and went back to the bedroom to feed Reese. About 5 minutes later, Davis starts screaming and crying. With Reese in hand, I run into the living room and see that Davis has taken the top off of his cup and spilled milk all over his bed and himself. *Reminder: it's only 7 o'clock in the morning. I haven't even had my coffee yet. And Davis CAN'T MOVE on his own right now.* There was milk everywhere. On the 3 pillows strategically placed around his body, his comforter, 2 sheets, THE EGG CRATE, him! It was awful.

I start stripping the bed, removing his clothes, cussing under my breath and, meanwhile, Reese is just laying on the couch, probably wondering when she's gonna get to finish her breakfast.

As I'm giving Davis his second sponge bath in less than 12 hours, I look up to find Reese, in slow motion, sliding off the couch, feet first, onto the floor. She lands on the ground (wedged in between the couch and Davis' bed) and grunts a couple times. I lay Davis down...swoop her up...she smiles...phew. Dodged a bullet there.

Home, Sweet Home

We spent 5 days at Scottish Rite and I swear, when we left today, it seemed like a month had gone by. I'm so glad to be home. So, so glad.

Physical therapy came in again this morning, before we were discharged, and said that Davis had even more range than he did yesterday. What that basically means is that he, on his own, was able to stretch his ankles, legs, etc further today than he could yesterday.

He even tried to walk around...

If you know Davis, you're aware that his legs and feet were extremely tight. You had to use so much force to bend his ankles and stretch out his legs. Well now, he's as loose as you and I. It's so amazing to see. What we have to do now is retrain his muscles and mind to work right, otherwise he'll go right back to the way he was.

He has to stay in the bed for another 3 days, so we set him up in the living room...

Reflect

When we did our stretching exercises with Davis tonight, we could already see an improvement just from this morning! AND he asked if he could sit up (he was not interested in doing this at all this morning)! AND we got him to hold on to me and stand up for a second!

We have a really long road ahead of us, but I look so forward to it. Justin and I have been on such an amazing journey since we were blessed with Mr. Davis. We're smarter, more patient, and overall better because of him. He's opened our eyes and lead us into a world that we would never have experienced without him. He's gonna do big things and I just can't wait to find out what they're gonna be!

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And we could never, ever, ever, never, ever have been able to get through all the tough times without the love and help from our family and friends! We have such an incredible support system!

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...Wow...all this sitting around has turned me into a pile of mush...If I'm here much longer, I might want to hug someone.

Up And At 'Em...Sort Of

Physical Therapy just came in and went over the program we're supposed to follow once we're discharged. We have to, for the next 10 days, complete a list of 'range of motion' and strengthening exercises/stretches. After 10 days, we have to begin incorporating more strenuous exercises. Doing this diligently over the next 6-9 months will teach him to walk a lot more like you and I do. Well, I shouldn't include me as a good walking model. I pretty much trip and lunge forward every time I stand up.

She stretched his ankles, legs, hips, etc. and was really pleased with how much range he has. She knew within a few seconds that he was a great candidate for the surgery. He sat up for a few seconds, but wasn't quite ready to get down and try to walk.

P.S. I just saw a woman, probably a mom, in the room with the baby next door. Phew.

Day 3, Post-Op...The Walls Are Closing In

"I'm not a pumpkin. I'm awesome." Legit statement from Davis' mouth after a nurse had the audacity to refer to him as her pumpkin.

Me: "Hey, Justin we have to 'dail' 9 if we want to make an outside call, according to this board."

Justin: "What?"

Me: "Yeah. 'Dail' 9. See? Simple as that."

Justin: "Wow."

Me: "Yeah, thank God grammar isn't essential to our son's survival here. Good grief."

I've been staring at that damn misspelled word so long that I think it should actually be a real word now. What should it mean???

There's a newborn in the room right next to our's and I have yet to see any adults visiting him. I've been tempted to sneak in there in the middle of the night to rock him to sleep. Pretty sure that might get me kicked out, though. I just miss my Reesey soooo much! I have NO business being away from her for any length of time, I've realized. But my mom brought her up here for a visit yesterday...

When one of the nurses walked in on me pumping Wednesday night, she put this sign on the door.

It's been the running joke around here that everyone probably thinks I'm still nursing my 4 and a half year old son.

Dr. Boydston's (neurosurgeon) nurse came in at about 6 o'clock this morning to remove Davis' bandage and revealed this...

OUCH! And HUGE!

A physical therapist is going to come in sometime today and get Davis out of bed and do some range of motion exercises with him. I'm really excited to get him moving, but I know it's gonna H-U-R-T...

Rhizotomy

I figured I should bring the blog back to life so that I can document this ordeal.

Davis underwent the Rhizotomy procedure to decrease the spasticity in his legs and, through intensive therapy afterwards, hopefully walk a little more 'normal', improve his quality of life, and give him some more independence.

SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord. Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord.

At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining

(EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact.This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.

Before they took him back for surgery, the doctor gave him some meds to calm his nerves, but what it really did was send him to another planet. He acted so drunk, but it was really entertaining and took all of our minds off of what was about to happen.

So, then it was time...Justin and I gave him kisses, told him we loved him and would be waiting for him when it was all over, and completely fell apart when he got out of sight.

After the surgery (and 4 long hours), we met him in his overnight room and prepared for what we thought was going to be a really rough time. But I have to say I now know, without a doubt, that my son is the strongest, bravest, most resilient child I've ever seen. I know he's in pain, but he's only barely mentioned his back hurting. He's supposed to lay completely still, on his side, for 3 days and has complied wonderfully. He's eating and drinking enough to amaze the doctors and nurses. Every 2 hours, the nurses come in to check his vitals and flip him to the other side and that's the only time he cries.

It's Friday now and we've basically spent the last 2 days watching Toy Story and Gumby on repeat. He can't even sit up enough to play Angry Birds on my phone. :(

I plan to take footage of his progress during the next few months...soooo...here's his before shot...

Updates...Finally

Potty Training: We've actually made progress! For about 2-3 weeks now, Davis has been successfully (and with minimal accidents) peeing on the potty! We still have to tell him to do it, otherwise he'll pee in his pull-ups, but we're getting there! Pooing is a whole different story, though. He almost never goes to the potty for that. Hopefully it'll all click with him soon.

School: Davis has adjusted well to his new, crazy schedule. He loves his class, teachers, and friends. They eat breakfast in the cafeteria every morning and lunch in the afternoons. The classroom is stuffed with fun things like a little kitchen, computers, dress-up clothes, books, crafts, ets. I feel like this year is going to be so beneficial in preparing him for kindergarten next year. I love picking him up in the afternoons and seeing all the snoozing 4 and 5 year olds sprawled out all over the classroom. Davis is always so out of it when I wake him up to go home. It's really cute.

Therapy: I thought suit therapy went pretty well this summer. I haven't seen tremendous changes in him, except that he's definitely stronger and has more balance. I'll definitely be going back to Orlando for Conductive Ed once Reese is about 6 months old.

Neurology: We've been seeing Davis' neurologist lately and revisiting the idea of maybe having the Rhizotomy procedure done. I'm still on the fence about it since it is so invasive, but the benefits are amazing and could really change the course of Davis' future. I'm not interested in the Botox or Baclofan because the results are temporary. There have also been discusions about a possible leg lengthening procedure. Nothing's definite and I'll keep everyone posted on what we decide.

Getting mauled by a goat at a 'petting zoo' themed birthday party.

Brother's Graduation! So proud of his uncle!

Doin' work at Kani House.

New Braces

After therapy yesterday, Davis had an appointment with his Orthotist to get fitted for new SMO's. I mentioned that his PT for Suit Therapy thought he'd benefit better from the Sure Steps, as they allow more ankle movement. She called his regular PT about it and they all agreed to try it. Minimizing the support he gets from these braces forces his muscles to work harder to compensate, but they all think they'll work great for him.

These are SMO's. They cover the entire length of the foot and fit snuggly around the ankle.

This is a Sure Step. They only cover about half of the bottom of the foot. They're open in the back to allow more ankle movement, but still provide the stable base he needs. He, of course, picked the skateboard design.

We're steadly seeing improvements from therapy. He's definitely standing taller and walking with his feet less scissored. His range is increasing, meaning the therapist can stretch him further and further each day.

Vision Board Update

Since the year is over halfway finished, I thought I'd give an update on the progress we've made with Davis' goals.

1. Stay healthy...I think he's only been sick once or twice this year and we've avoided medication both times.

2. Conductive Education...We're not going to Orlando for therapy this year since I'm pregnant, but the Suit Therapy we're doing in Lawrenceville is substituting wonderfully.

3. Potty trained...Grrrr...'nuff said.

4. Positivity and confidence...He still gets frustrated when he can't do something, but we're working hard to encourage him to 'keep trying'. Overall, he knows he's pretty bad ass.

5. Increase food variety...he's still really picky about what he'll eat, but he's willing to try new things. Still not many fruits and veggies in his diet, though.

6. Gain at least 5 pounds...So far, I think he's gained 1.

7. Learn daily life skills...he can undress himself, brush his own teeth, and he's become really great about cleaning up after meals, playtime, etc.

8. Run...Oh yeah! And he learned how to jump this week!!!

9. Increase verbal and receptive speech...This improves every day. He never stops talking. Still struggling with the 'l' and 'r' sounds.

10. Learn to ride his tricycle...Not really there yet.

11. Increase fine motor skills...He's improving, but still not age appropriately. This intensive OT is definitely helping, though.

Trip to the Museum

Justin went out of town with his dad and step-brother, so I took Davis to the Tellus Museum in Cartersville on Saturday. It wasn't nearly as nice as the one I took him to in Orlando, but we still enjoyed ourselves.

The Science in Motion exhibit displayed antique cars, bicycles, trains, etc. Davis desperately wanted to touch and sit on everything, which was obviously not allowed.

We went 'digging' for fossils and 'gem panning'.

I was fascinated by the 15-foot 'turtle' fossil. I can't remember what they called it or how old it was, of course.

I couldn't get Davis to stand in front of the 9-foot Megaladon (shark) jaw. He was, for some reason, scared of it.

I thought the children's area was really low budget. They had stuff that you could find at any daycare center.

Suit Therapy Week 1

In just a week, Davis is showing improvement with his balance, standing, and strength. His PT said that he's gained 30% range in his left hamstring and 20% in his right. The woman that did his evaluation a while back, saw him today and also thought he had improved since then.

His OT is working really hard on his finger and hand strength. She had him draw a bunch of squares on paper today and they actually look like squares! Go 'D'!

Holiday Weekend and Suit Therapy Day 1

Pride for his country...

Friday night...The Varsity and Braves Game with some new friends of ours, the Greens.

First Naked Dog.

Saturday morning...Fourth of July Parade in Cartersville, also with the Greens.


Saturday night...Fireworks show in Woodstock with Eva and her family.

Justin and Eva
Wes and Davis

Sunday...Out on the lake with the Prices. Afterwards, we headed over to Justin's aunt and uncle's house for their annual 4th cookout, which always involves extremely competitive volleyball, Polish beer, horseshoes, and great company. They own about 10 dogs and one of them had a litter of 8 puppies on Saturday, so Davis got to pet and love on one. It was the cutest thing in the world.

Day One of Suit Therapy...Davis' physical therapist seems really great so far. She's super enthusiastic and motivating. She worked on muscle building exercises and did a wonderful job of keeping him interested and engaged for 3 hours. She seems really hopeful that we'll see a lot of improvement with his balance, gait, and leg scissoring. Starting tomorrow, he'll also be receiving an hour of Occupational Therapy to work on his fine motor skills. I feel bad that he's going to be working so hard for the next 3 weeks, but he enjoyed it so much.