Selective Dorsal Rhizotomy

TheraSuit Week 2 {Cliff Update}

July 22, 2012 2 Comments

This week Cliff did AWESOME!
He never fails to amaze us!
He has been working really hard with his canes.
Also, Lisa did not put the lower half of the suit on him much this week because he is doing so well without it and it’s time to start “weaning” him off the suit since next week is his last week!

(See his scars from the PERCS surgery he had in May?!)

Here Cliff is working hard in Spider.
The bungees give him a little support and balance, but Cliff is really doing all the work!

I am still amazed to see a 4 year old work so hard and push himself to the max!
He never gives up!

His core is getting much stronger and he is standing up taller this week!
This week Cliff stood for 8 seconds without ANY support or braces on!!!!
We are sooooo proud of him!

Cliff is working hard on learning to shift his weight.
See that tongue sticking out?!
That means “THIS IS HARD!”
But he still pushes through!
(oh yea… and he is standing in spider ALL BY HIMSELF and shifting his weight!!!)

This is the pulley system used to strengthen and isolate certain muscles.
Cliff really likes “doing his exercises!”

This week the firemen came to share fire safety tips with the wonderful children at The Therapy Place.
Cliff was thrilled when they let him spray the fire hose!

This little boy is the hardest working individual I have ever met.
We are so so So proud of him.

Despite all the everyday struggles Cliff faces, he always has a smile on his face.

Words cannot express how much we love him!
He shows us on a daily basis what REAL hard work is!

My heart melts when I see the connection Cliff and Lisa have with each other!
It really is amazing and we are so blessed to have her work with Cliff!

Here is a video of Cliff walking with is canes ALL BY HIMSELF at the end of a three hour session last Thursday!
This video was taken at the end of him walking a LONG distance with his canes!
This video is tough to watch, but it really shows how hard Cliff works despite exhaustion and how determined he is to walk independently!

Even with all of the hard work, they still manage to have fun and lots of laughs:

But as for you, be strong and do not give up, for your work will be rewarded.

2 Chronicles 15:7

*A HUGE thank you to the Therapy Place TheraSuit Facebook Page for allowing me to snake pictures of Cliff this week!

Filed Under: Faith, Family, Selective Dorsal Rhizotomy, The Boy, TheraSuit

Cliff Update! {Post Op Week 3}

June 3, 2012 3 Comments

Cliff has been a ROCKSTAR this week!
He is venturing out in his walker and is requesting that he walk everywhere!

We are thrilled that he WANTS to walk and is now able tackle long distances.
His resilience is amazing!

Cliff worked super hard at PT this week!
And he is asking me to stretch him every night because it will help him “be taller!”

Cliff is working hard to strengthen his hip flexors.

And walking with his canes is still very challenging,
but no longer intimidates him!

Seeing Cliff work so hard with a smile on his face makes me one VERY proud mama!

He is one determined little boy and we are amazed at his progress in just three short weeks!

We are so excited to see what the future holds for Cliff!
I know the Lord has BIG plans for this little boy!
We are so thankful for Cliff!

I will instruct you and teach you in the way you should go; I will counsel you and watch over you.

Psalm 32:8

Filed Under: Faith, Family, Selective Dorsal Rhizotomy, The Boy

Cliff Update {Post Op Week 2}

May 26, 2012 4 Comments

This week started out ROUGH!

Cliff was not wanting to bear any weight on his right leg and would not straighten it out! He refused to even look at his walker and would pitch a fit when I tried to put his braces on him.
I was starting to panic and even had a complete break down one time because I started to question if we did the right thing.
Well, this only lasted a few days and by Tuesday, Cliff was doing this:

{11 days post op}

I took him to The Therapy Place on Tuesday for his last day of The Bridges Program and after being there for 6 hours and having an AWESOME hour of PT, I walked in to pick him up and he was WALKING in his walker!

Everyday, Cliff has been getting stronger and faster!
He is getting heel strike with his left foot AND his right foot!
He is finally able to straighten his right leg completely and really swing his leg out to take a proper step!
In the video, you can see how Cliff’s left foot turns in a little.
This is because of muscle weakness, but he is learning to correct it on his own!
We are so proud of Cliff and all that he has accomplished in just two short weeks!

The rest of this week has been magical for Cliff!

He is doing things that may seem so small to many people,
but are HUGE for him!
He is walking with FLAT FEET and gets tickled with himself with every step he takes!

He will stop, giggle and say “Look, Mama! I am walking with FLAT feet!”

He says his legs are feeling MUCH better but are still a “tiny bit sore!”

And he is asking to walk pretty much everywhere!

He is such a brave, strong little boy and we are so blessed that God allowed us to be his parents!
Cliff is such a blessing to us and is our daily reminder of God’s love.

Give thanks to the Lord, for he is good.
His love endures forever.

Psalm 136:1

Filed Under: Selective Dorsal Rhizotomy, The Boy

Cliff Update {Post Op Week 1}

May 17, 2012 6 Comments

Cliff’s PERCS surgery was one week ago today!
And he has come a long way already!
Seriously, his determination and strength amazes me.
I am in awe of my four year old.
He is by far the strongest person I know!

As soon as we got home, Cliff started crawling around and climbing off of furniture.
He really did not skip a beat!
Everyday we do post op exercises and he tries to stand.
Cliff had his first hour of physical therapy with his amazing, wonderful therapist, Danielle on Tuesday!
He did well considering he just had surgery 4 days prior.
He tried to stand, but it was very difficult for him.
He is sore and he is feeling sensations he has never felt before.
He has to learn how his “new legs” work and it is scary for him.

Oh yea, we also took his bandages off on Tuesday and his incisions are looking good!

Today the littles slept until 9:00!
And the planets must have been perfectly aligned because we all woke up in great moods!… maybe it was the extra sleep we all had!
Today, Cliff arrived at PT ready and excited to work hard!

Cliff stood up with more confidence today!

And even though this is very challenging to him,
he rose above the challenge with a smile on his face!

Cliff let go of Ms. Danielle’s hand and pointed!

He said “I see a C for Cliff on the wall over there!… it’s red!”

(Note: this is all while STANDING with ONE cane and a little support from his PT!)

Then Cliff walked in his walker for the first time since his surgery!

It is very difficult for him and he has to learn how to use his legs properly.
He was so proud of himself!

…and then a split second later,
soreness and defeat took over.
But with a little cheering, he managed to take a few more steps and really push himself!

Did you notice that Cliff is getting HEEL STRIKE?!

He is doing really well lifting his left knee and swinging his leg through to achieve heel strike and take a proper step! The right leg will get there, he just needs to strengthen his hip flexor in his right hip (like stomping). His steps are MUCH better already and I know they will continue to get better and better everyday!

We are so thankful!
Our Lord continues to bless Cliff!

Seeing Him perform miracles right before our eyes is simply wonderful!

God is soooo good!

"He performs wonders that cannot be fathomed, miracles that cannot be counted."

Job 9:10

Filed Under: Faith, Family, PERCS (Tendon Release), Selective Dorsal Rhizotomy, The Boy

The Wait…

May 10, 2012 9 Comments

This morning,
we took the long stroll once again from the hotel to the Children’s Hopsital.
But this time was different.

Today is “flat feet day!”

After Cliff snagged some cool Cars stickers,
it was time to head over to Same Day Surgery and check in.

Cliff was a little unsure at first,
but after he met his sweet nurse and the wonderful doctors who would be with him today his nerves seemed to melt away and his sweet smile returned.

Dr. Dobbs came in and marked Cliff’s legs where his incisions will be.
Cliff thought he was silly for writing on him!
Dr. Dobbs checked Cliff’s legs out again and we decided that in order for Cliff to have the best outcome and the ability to walk with flat feet, his gastroc needed to be released too. The left leg is tighter than the right leg so Dr. Dobbs will adjust the intensity of the release accordingly so Cliff’s legs will be symmetrical in their ability to stretch.

So, he is having a Bilateral Hamstring and Gastroc Release.

The highlight of Cliff’s morning was when the nurse gave Monks & Pups their own tags to match Cliff’s hospital bracelet.
They also listened to their heart beats and prepped them for surgery!

I was able to give Cliff some “happy juice” aka Versed, which REALLY made him loopy!

Of course I had to get some lovin’ before they took the boy back.
Handing your child over is the hardest part.

The anesthesiologists came in and took Cliff on a ride!

Cliff was very clam and did not cry at all.
He is so brave and so strong!

Now it’s time for Ross and I to wait…

Thank you all for your prayers and support!

We are so blessed to have all of you rally around us!

Today,
Ross and I are calm.
We know that God is with Cliff.
Our Lord is so wonderful.
We completely trust Him!

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:6-7

Filed Under: Family, PERCS (Tendon Release), Selective Dorsal Rhizotomy, The Boy

Our day in St. Louis & Surgery Details!

May 10, 2012 1 Comment

After a lazy morning sipping coffee,
we decided to get dressed and hit the pavement again!

We were all craving the energy that St. Louis has to offer.
We needed it to distract us.
And it did not let us down!

We stopped at a little bistro and ate a fabulous lunch.
Sidewalk dining is becoming a favorite in this family.

Kisses.
So sweet.
I can never get enough.

After lunch,
we continued to get lost in the hustle and bustle of city life.

And before we knew it,
it was time to head over to see Dr. Dobbs, the Orthopedic Surgeon that will perform Cliff’s surgery tomorrow.

After the long walk through the never-ending crosswalks and hallways that connect our hotel to the hospital, we were finally in the “sacred area” known as Children’s Hospital.

The Boy knows that this is the place where Dr Park “fixed his legs”
and I am pretty sure he loves these hallways just as much as Ross and I do.

The smell, the lighting, the smiles on children’s faces that we pass in the halls who are going through things at such a young age that most of us will never face in our lifetime all bring back the feeling of hope that was given to us here.

This is where we heard THOSE words that would change our outlook on Cliff’s future.

You know them,

“Cliff WILL walk independently!”

No one else has EVER said that to us and right here,

we were given the gift of hope.

In this place,
hope filled our hearts and there was no room left for despair.

After going over some information with Michelle, the nurse,
Dr. Dobbs came in the room and began to check Cliff out.

Cliff was calm and said “Hey man!” when Dr. Dobbs walked into the room.

Dr. Dobbs is comfortable, we felt as if we had known him our entire lives.

What can I say, The Boy knows an excellent surgeon when he sees one!

Dr. Dobbs said that Cliff’s heel cords had good range of motion and that they did not need lengthening done! He did tell us that Cliff will most likely need a heel cord release sometime in the future as he grows, but we will just monitor his range of motion as he gets bigger. He said that Cliff’s hamstrings were what is causing him to walk on his toes. So, in the morning (at 7:15am CST to be exact) he will make a very small incision on the backs of Cliff’s legs, above his knees and perform a Bilateral Hamstring Release.
We are thrilled because this is the most minimally invasive route possible and Cliff is the perfect candidate for this procedure!

Then after going over some post-op details,
Dr. Dobbs looked at us and said

“I am EXTREMEMLY optimistic that Cliff will walk independently…
and you should be too!”

I just about tackled him and plastered kisses all over his face right there.

Yep.

We heard THOSE words again,
and this time was just as sweet and wonderful as the first time.

All three of us laughed, giddy with excitement and were beaming with pure joy on the long walk back to the hotel.

God is so good!

Cliff is very calm and even seems to be a little excited about tomorrow.

He informed us as dinner tonight that
“Dr. Park fixed my legs and Dr. Dobbs is going to help me walk with flat feet!”

Please continue to pray for Cliff.

Please say a prayer for Dr. Dobbs and the wonderful medical team that will be in the operating room with Cliff tomorrow morning.

Please pray that Ross and I remain strong so that we can comfort Cliff.

"He performs wonders that cannot be fathomed, miracles that cannot be counted."

Job 9:10

Filed Under: Faith, Family, Selective Dorsal Rhizotomy, The Boy

Our day in St. Louis & Surgery Details!

May 10, 2012 2 Comments