Monday, December 14, 2009

Heaven's Special Child

A very good friend of mine was reading Dear Abby and thought of ME (and My Special Child) when she read this.

Heaven's Special Child

A meeting was held quite far from Earth
It was time again for another birth
Said the angels to the Lord above:
"This special child will need much love
His progress may be very slow
Accomplishment he may not show
And he'll require extra care
From the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
So many times he will be labeled
"different, helpless and disabled"
So, let's be careful where he's sent
We want his life to be content
Please, Lord, find the parents who
Will do a special job for You
They will not realize right away
The leading role they are asked to play
But with this child sent from above
Comes stronger faith, and richer love
And soon they'll know the privilege given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is heaven's very special child.

Sunday, November 1, 2009

Riding “Hippo’s”

Cole on Smokey
Cole is riding hippo’s for HIPPOTHERAPY!
“Hippo” meaning horse from the Greek language. This is a form of therapy that uses the movement of the horse to aid in physical, occupational, and speech therapy.
Our days of auquatherapy have come to an end due to insurance. It is so true that when one door closes another door opens. We will miss our fun water ‘play’ but it was an awesome experience watching Cole on top of Smokey.
We were lucky enough to find this facility, Coffee Creek Riding Center, a member of the North American Riding for the Handicapped (NARHA), that offers this once the child reaches age 2 1/2. We went in for an assessment to see what will be required for Cole (and what he can do for himself…if he could even stay up on the horse).
Our first step (after the paperwork, of course) was to introduce Cole to the horse. Originally we got to meet Dusty and got to brush Dusty’s mane. Some of the brushes we used, Cole had a hard time hanging onto, but he finally got the idea and grabbed on to the brush.
Cole playing games!
As Cole sat on Smokey the team would guide the horse to walk to different centers. At each center there was a flat circle of a different color and a snap together plastic ‘bead’ of that same color. They would hold the circle up and Cole would have to hold the bead and place it on the circle. Another game they played was to put a small toy inside a box. One of his favorite games was shooting (or dropping) a ball inside a big net. Cole liked this one and he would try to eat the ball.
090925-142052 Cole shooting a football into the net.
At the end of his session Cole had a race with another little boy, playing ‘Ready, Set, Go’ and again with ‘Red Light, Green Light’ and each child won once.
Cole had a great time riding the horse and didn’t realize he was ‘working’.
Our normal schedule will have Cole riding every other Friday, unless there’s a holiday. I wanted to see the difference in his first time to ride and the next, if there was one. I had previously written about Cole wearing Theratogs. These really help with him using his core, reminding him to use those muscles. Unfortunately on our first visit he apparently didn’t want to wear them as he did the typical ‘boy’ thing and peed on them as I was getting him dressed for school that day.
On his first ride he was pretty “floppy” so they wrapped a support belt around his waist that helped a little. On our second visit I made sure I changed him faster that morning so he had his Theratogs and the support belt for that ride. I could see a noticeable difference in his posture.
IMG_0619 023-1 IMG_0604 008-1
Cole got to ride Opie for his second visit. We did the same routine of brushing and petting Opie as we did for Smokey on our first visit. In the pictures above Cole is meeting Opie and then placing something inside a small green cube. Below he is placing a yellow plastic bead on a yellow square and another learning activity.
IMG_0607 011-1 IMG_0605 009-1
Cole is loving riding “hippos”! Unfortunately we don’t have the space (or the training) for hippotherapy or just riding (keeping) a horse at home, but he loves our version at home too.
IMG_0597 001-1

Sunday, August 23, 2009

5 Little Monkeys Jumping on a Bed

Cole is now 2 1/2 years old and he still can not talk.

I love this video of him playing the “5 Little Monkey’s Jumping on a Bed” game on the Dynavox. You can see he is so excited and he wants to interact with it. He is squealing in delight.

As you may know, if you have read previous posts, we have been teaching Cole ASL as taught on the Signing Time DVD’s.

Cole is very bright and it is obvious he knows what WE are signing to him. There are even some signs that I think he is attempting. But, we don’t want to close any doors and will try ANY means of communication with Cole.

The above video is from when the Dynavox representative came to see if she thought Cole would even be able to use this device. She (Neala) was very kind and patient and feels like Cole is very capable of using a communication device.

With this particular device we have SO many options that would assist Cole. We first tried using the eye scan method. This was very cool. A ‘scanner’ (of sorts) was attached to the bottom of the device and could read both eyes and Cole would be able to scan/choose what he wants with only his eyes.

Well, he would be able to use this IF his abilities made this his only option. This method will not work for Cole as his head is too floppy and he would not be able to hold his head up straight enough to consistently look at the box to choose what he wants.

Another option would be to use a ‘switch’. This looks like the big red ‘Easy’ button that you may have seen in the office supply commercials. Typically this may be located around the head area. Again, I’m not sure this would work for Cole due to lack of head control and….he is a bit claustrophobic about things around his head and would probably completely freak out. Although, we could use the switches for his hand and/or feet. He loves to use his feet so that may be an option for him.

We prefer, and think Cole does too, the last option of Cole simply touching the screen to choose what he is wanting the device to say for him. He does tend to drag his hand and is not completely accurate right now. We think this will improve with practice.

In any case, it is very obvious that Cole is a very smart little boy and he WANTS to use his hands to use this device.

The Dynavox is awesome! It can start out very simple and can grow with him as he learns to talk/form sentences. We can download books (which he totally LOVES) and music (LOVES just as much) and videos, etc.

We are praying that some day his mouth and head and trunk muscles (very low tone) will some day be strong enough that he will be able to talk. If this never happens, then we just want him to be able to communicate his needs and wants and thoughts…in whatever manner that may be.

Thursday, July 30, 2009

Special Friends at Special Care

I have mentioned before how much Cole loves being at Special Care School and we love the services they provide.

While Cole is at school they work with him and he is seen by his team of therapists. They are truly amazing!

His therapists are Suzanne, Joan (at the school-physical & occupational therapy) and Lindy (from our state’s early intervention program-speech & swallow therapy) & I take him outside of the school to see Lisa (for swim therapy).

Joe found this article in the paper that covers Cole’s school and I wanted to share. As you will see, they have a great facility and they do great things with what they have! Below is the article from The Oklahoman:

Oklahoma City special care center’s best worker isn’t human


Special Care Inc. recently hired a new employee, and he instantly became the most popular worker.

Featured Gallery

He’s also one of the busiest at the northwest Oklahoma City center, which primarily serves disabled children.

He works a 9 a.m. to 6 p.m. shift Monday through Friday, and he only takes one break, for lunch at 4 p.m. He helps kids during physical therapy. He takes them out for walks. He even tucks kids in at nap time.

But you won’t ever hear him brag about his work.

Costa, a 2-year-old black Labrador retriever, has been on staff at Special Care for a little more than four weeks, and Pam Newby, the center’s executive director, said he’s been an invaluable addition.

"We really strive to provide the very best in cutting-edge treatment for our kids, and he’s really helping us do that,” Newby said. "The kids just love him. Even the babies love him.”

Special Care serves about 135 children between the ages of 6 weeks and 19 years, and helping so many can be taxing on a staff of 35. But Costa has made all jobs at the center more enjoyable.

Long process

Newby went through a 10-month process to get Costa from Canine Companions for Independence in Oceanside, Calif.

She sent in an application and then had a phone interview. Next, she had a face-to-face interview via the Internet so officials could make sure Costa would have a good home after his workday.

Following that, Newby went to Oceanside for a two-week training program in June to get acquainted with how to work with an assistance dog.

Katie Malatino, a public relations coordinator for Canine Companions for Independence, said the group spends roughly $45,000 training and preparing each assistance dog. The dogs are then given free of charge to agencies that pass the application and interview process.

All Newby was responsible for was her transportation to Oceanside and providing for Costa’s living costs and routine visits to the vet.

Since arriving at Special Care, Costa has been instrumental in helping the kids, said Suzanne McQuade, a physical therapist at the center for 14 years. The main thing Costa does is provide motivation for kids to do better in their therapy.

But the most impressive thing about him is how he stays calm around so many people.

"The kids will sometimes pat him a little too rough or they might accidentally kick him with their foot when they’re walking because they don’t have good motor control,” McQuade said.

"He stays on task and focused and disciplined no matter how unpredictable the children are in their movements.”

Getting a co-worker?

Newby and McQuade said one of the first things each kid asks when they get to the center is, "Where’s Costa? Can we pet Costa?”

But Newby said she notices Costa is tuckered out when she takes him home at the end of the day.

Having more than 135 pairs of hands eager for attention every day can take a toll on even the most diligent of workers.

Because of Costa’s impact on everyone involved with Special Care, Newby said another canine companion could be on the way. She didn’t have an estimate as to when that could happen.

"I think there’s room for one more,” Newby said.

"Costa helps us serve our kids better, and that was the whole goal when we decided to get him.”

Related Topics: Health and Fitness, Medicine, Medical Treatments and Procedures, Physical Therapy

Monday, July 27, 2009

Many, many “Thank You”’s!

I know to some the subject of donations can be a touchy one.
I have been wanting to post about my gratitude for all the generous donations we have received big and small but wasn’t sure how others felt about their names being posted.
There are some that I know, some that are total strangers & some from groups so I may not even have all of the names. Some donations are not necessarily monetary but have helped just the same.
If I forget to mention you & you have donated, please forgive me. I have tried to make note since the beginning but my memory is not always the best.
Many, many “Thank You”’s go to:

Family (of course)
Grandma & Papa (Mom-thanks for the week you made sure Brett & Shane were taken care of while I stayed with my fragile baby in the NICU), Bobby & Stephanie, Johnny & Shawna for not only the money you threw in but for the support you offered. Travis for your trips to the NICU to check on your newest little nephew and Erica for the phone calls to Papa checkin in on the babe. And Grandapa Bob for always calling with concern & keeping his side of the family informed.

Aunt Sonia…for the daily visits and pics in the NICU (and for tickling Cole’s feet just to piss him off ;P) and bringing Kelsey with you when you could. David & Sally for the many phone calls making sure we were ok.

We have so many, it will be difficult to mention all by name (it’s a wonderful thing) but I will start with the parents from Shane’s baseball team that made a personal visit up to the hospital while I was still delirious and upset because my baby had to be bussed to a separate hospital. And the parents that made food and brought to our home knowing how difficult it was to spend all day at the hospital & still have to come home to feed our other boys. Jeff & Jennifer for being brave enough to keep Brett & Shane at your place (was it for the whole weekend?). And Wes & Keri Hill, Wes thanks for offering to organize a baseball fundraiser and for helping with the 'follow through'.

Rockie & Julie,Cindy W., Kim, Cathy, Sheila, Cindy B, and Sydney, Kim & Terry.
Co-workers Twylah, Kelly, Marilyn, Shara, Chris, Dorothy, Stacie, Tammy, Cara & Thomas,Vicki, Jackie, Mitchell, Kim and Pam.
Joe’s builder/employer David & Sherrie and partner Carl & Emily, friend Craig and the guys from the church men’s basketball group.
All of our friends we have made through the Early Intervention team for all the wonderful services you have provided from services to apply for to therapy you have provided. Special thanks to Lindy & Kim for hooking us up with the fund raiser and bringing your friends and most of all for loving my baby as your own…he loves you guys. Nova for getting the fund raiser together for us.
For his other therapists at Jim Thorpe. You guys were awesome with Cole & we miss you. I’m sure we will see you again soon.
Thanks to Azhar Therapy’s owner Lisa that provides Cole with aqua therapy, which he LOVES!
I don’t want to leave out the wonderful nurses from the NICU that took such gentle care of my baby and comforted us when we would freak out every time the monitors attached to Cole would go off (again). Special thanks to LaTonya who added extra comfort as she is the wife of a co-worker & we had met previously.
Cole’s pediatrician, Dr. Simmons, neuro, Dr. Hille and Dr. Wright that is working with Cole’s botox injections (and all the wonderful staff).
Cole’s teachers at Special Care School (which he loves) Loretta, Julie, Angela, Rachel, Rachel, Ryan, Phyllis and others I am sure I have left off. And special thanks to the owner Pam that made it possible for Cole to get what he needs. Pam D for all the bookkeeping. And for his wonderful therapists that do so many wonderful things with Cole…Suzanne & Joan.
We appreciate the calls, concerns, food, hugs, and prayers!! and what money you may have contributed.
Special “Thanks” to Crocks shoes for supplying Cole with shoes that are AWESOME and fit great over his orthotics.
Much love to other mommy bloggers that have helped provide me with my therapy. Blogging has been as awesome outlet for me.
Thanks to Mel (daughter with CP) for the friendship, laughs, and the generous offer to donate $4 for every “Cole'” tile necklace sold from your shop.
Thanks Keri (son with CP) for so much wonderful CP info and the friendship.
Thanks Heather (son with CP) for friendship and prayers and support.
Thanks to all of the Signing Time group for opening a door of communication. And the friendships I have made in the group.
…and to the monetary donations…we appreciate your generosity so much!! Without your help we would not have been able to keep Cole in Special Care School.
Ed Daniel, Keith Gibbes, Dean & Susan Vassilakos, Kurt & Karen Billen, Ashley Turvey (Jones?), Will Massad, Joshua Guess, Charles Schiavo, and in loving memory of our friend Ed - Brent & Connie Weis and the Revenue Accounting Dept at Mustang Fuel Corporation, Janie Colliver, Tanya Brown, Karen Johns, Barbara Knight, Linda Kolar. Jeffrey Kunkel, Amy Hopmann.
And if you remember John Connor from the Del City baseball fields…he had made a very generous offer and I posted about his generous offer here…that offer did not occur at that time. Now, I want to tell him an official ‘thank you’ as last week while we were out of town he was kind enough to follow through with part of his offer and made a donation into Cole’s account at his school which will allow us to use recent donations in his trust towards his medical equipment and bills.
THANK YOU! to you all!
Now we will have to concentrate on other fund raisers & donations to finish paying for treatments/therapies (as at times insurance feels these are not medically necessary so we will be paying out of pocket) and medical equipment he requires just to assist him as he still can not sit, crawl, stand, walk, or talk on his own. We will also have future schooling to pay for.
Any ideas or any garage sales or fund raisers in Cole’s name are appreciated as well!

Sunday, July 5, 2009

In Loving Memory of …


Ed Daniel

We will miss our good friend Ed!

Ed was Joe’s golfing partner (the only one that was sure to make it to the course almost every weekend ‘no matter what’, over many years) and a very caring & generous friend. He loved the game of golf and Joe loved playing with him. They had many great conversations about everything.

One of the most common conversations between Joe and Ed was in regards to Cole. He was genuinely concerned about Cole’s progress and future. With Ed having such a huge heart he was also the biggest contributor to Cole’s trust, assuring that he was able to remain in Special Care School. For this we will be forever grateful!

On Wednesday, July 1st, Ed called Joe wanting to go play a round of golf. The local course had a special “$6 after 6:00pm”. Of course, Joe was all in. He asked if I would like to walk the course with them for exercise.

We met Ed at the first hole. He was sitting on a bench waiting for us and our turn and mentioned he was pretty tired from playing golf the day before but still wanted to play. Joe was teasing him about hitting into “Ed land” (into the trees). haha

By the time we had made it to the third hole we could see he was struggling and when the beverage girl came by he decided to get a ride back in to the club house.

Joe and I continued on until the eleventh hole and headed back to the parking lot where Ed was trying to cool off. We ended up having to call 911 after talking to his brother and they took him to the hospital where he passed away on Thursday, July 2, 2009.

~today we played for you Ed~ I know Ed would not have wanted Joe to miss his tee time, so, for the first time ever I played a full round of golf with Joe. I know I was nothing close to the partner he is used to playing with but hopefully I made Ed proud!

May every hole in heaven be a hole in one for Ed!

…below is the obituary from The Oklahoman, our local newspaper

Edwin Daniel Jr.

Edwin Curtis Daniel JR passed away on July 2, 2009. He was born on October 29, 1947 in Oklahoma City, Oklahoma. He graduated in 1965 from U.S. Grant High School. He then went on to college at Oklahoma State University and graduated in 1971 with a Bachelors Degree in Computer Science. He was preceded in death by his parents, Edwin Curtis Daniel SR and Lois Hunter Daniel. He left to cherish his many loving memories and gifts to this earth his 2 children: Carrie Christine Rodgers of San Antonio, Texas and Kevin Curtis Daniel of Maumelle, Arkansas; his 2 grandchildren, who were the apple of his eye -- Emily Nicole Daniel and Jace Aransas Rodgers; a son-in-law, Michael Rodgers, a daughter-in-law, Nancy Daniel, a sister, Sharon Shaw of Tuttle; a brother, Don Daniel of Oklahoma City; a brother-in-law, Dell Shaw; and a sister-in-law, Carolyn Daniel; and a host of family and friends who meant the world to him. Ed was employed with Mustang Fuel for over 23 years. Previously he worked for The Economy Company and American Educational Computer. Everyone who loved Ed knew he had a passion for golf, horse racing, basketball and was an OSU Cowboy at heart. He was a loving, caring, generous man. Everywhere he went, from Remington Park to OKC Thunder games and to even the dry cleaners, he always saw a friend. A visitation will be held on Monday, July 6, 2009, 8am-9pm at Chapel Hill Funeral Home. The funeral will be held on Tuesday, July 7, at 10:00 am in the funeral home chapel, with interment at 2:00 pm at the Lexington Cemetery in Lexington, Oklahoma. Memorial donations may be made to a charity close to Ed's heart, The Cole Keathley Trust Fund at Flowers will be provided by Jewel Box Florist, 4205 South Penn, (405) 681-6671. Pallbearers are Stan Weed, Joe Keathley, Brandon Newport, Eric Shaw, Greg Shaw and Jeremy Daniel. Honorary pallbearers are Don Daniel, Dell Shaw, and Michael Rodgers. http//

We would like to give special “thanks” to Ed’s children, Carrie and Kevin, for being so caring and kind, like their father, and mentioning Cole’s site and trust. I pray that you can find comfort in knowing your father’s last moments here with us were doing the thing he loved so much…playing golf.

Thursday, May 28, 2009

A Thousand Words Thursday – Hippity Hop


What? Did I miss posting about Easter?

So, no big deal if I backtrack to a few events through A Thousand Words Thursday, right?

Isn’t that the point? Use those old(er) photos that say a thousand words?

I want to show you how much Cole has grown since last Easter.

This first picture (above) is Cole this past Easter of 2009. He was loving it when I piled all of his Easter basket goodies all over him…grass and all. He was getting so excited and even started helping pulling everything out, which I thought was great use of his hands.

Now, below you will see Cole from last Easter of 2008. He really had NO interest in the eggs, candy, toys (other than when Shane was blowing his bubbles) or even his grass from his basket.


Either way, isn’t he just as cute as a button? (whatever that really means…just adorable!!) I just love my little man to pieces!

Cheaper Than Therapy
for more ATWT see
Cheaper than Therapy

Thursday, May 21, 2009

A Thousand Words Thursday - Tubes

090515-053707-3Early to Rise!

On last Friday, May 15th we left the house bright and early to go to Mercy Hospital Outpatient Surgery to have tubes placed in Cole’s ears.

Hopefully we can get some relief from the constant ear infections that he has had all year.

090515-083839-3Not a Happy Camper!

My poor baby! He really was a trooper! He was slightly cranky before the surgery while sitting in the waiting room for 1 1/2 hours and then here when coming out of anesthesia.

I really don’t blame him for the crankiness in the waiting room. That is a LONG time to ask a baby to happily sit when it is THAT early in the morning (I felt a little cranky myself!) and then he just wanted his bottle of milk. Unfortunately that couldn’t happen.

090515-154524-3Wanna Smooch?

So this lovely lady is what Daddy came up with to entertain Cole while we were once again waiting…but to be released this time. He grabbed a surgical glove and blew it up like a balloon.

Of course I added eyes and lips after we came home and Cole thought this chic was pretty funny!

Cheaper Than Therapy
for more ATWT see
Cheaper than Therapy

Thursday, May 14, 2009

A Thousand Words Thursday – I’m So Excited!

Aunt Stephanie helping Cole walk
Don’t you just LOVE the BabyLegs?
I have been awful about posting. I still have not posted from Cole’s birthday. From any of our Easter and several other things.
I just wanted to throw in this because he was so cute in his shorts and BabyLegs at Easter. His Aunt Stephanie was helping him walk and he was getting so excited.

Cheaper Than Therapy
for more ATWT see
Cheaper than Therapy

Monday, May 11, 2009

I Feel So Blessed This Mother's Day

Cole had a very busy week. Just him and I went to Tulsa from Thursday through Saturday and he got to spend some time with his Grandma.

While we were there Cole's Uncle Bobby took there pictures and I thought they were so cute that I should share.

We were really having to work hard to try to get him to smile for the pictures!

I am so thankful that Uncle Bobby is so talented! We ended up finding a couple of shots we could use.

I know that I am truly blessed to have my precious baby Cole. And it is amazing to watch him grow and to see his progress that is SO huge to us (although usually very small strides for a typical child)!

I came across this video on the internet today and thought it would be perfect to share for Mother's Day! It sings about how Mom's just love their baby's just like they are! That's exactly how I feel about Cole.

Wednesday, May 6, 2009

Wordful/Wordless Wednesday-We Survived Botox

Turn It Daddy

Joe was so much help. Cole loves to be read to and Joe kept him happily entertained reading The Lion King. (notice the clenched fist grabbing Joe's hand)

Love This Book!

Cole says, "...and the lion says 'ROAR!'"

Funny Face

Smile for the camera! He's already making silly faces before getting the versed.

That's so Funny!

And...with the versed it is even funnier when Daddy reads Finding Nemo.

Cole received 3-4 injections of the Botox in each arm. We were so proud of him because he did not shed even one tear. As a matter of fact, he didn't fuss at all.

Ta-Da, I Did It!

"Ta-Da! I did it!"

I have to say, I don't think that Botox is the 'miracle cure' for Cole but it has obviously made a difference already.

Now I just hope for the next few months, while Cole's muscle's are relaxed, his therapists can use this opportunity to 're-train' his brain to tell his muscles how to react without also fighting the spacticity.

Thank you to everyone for all your kind words and your support! I am glad we made the decision to move forward with getting the injections. I will post more as we see progress.

see Seven Clown Circus

Sunday, May 3, 2009

Cole Before Botox

(see more pics by clicking on the + on the far right pic)

Tomorrow is the big day!

I am dreading the 4:00 am wake up call when it is time for a bottle and my poor baby will be screaming at me, not understanding why I will not give him one.

I dread that my baby will be unhappy and uncomfortable while strangers poke and prod him, not understanding why I am letting them do this.

I pray that I am wrong, that he will be fine and go with the flow of things.

I pray that we only see a positive outcome from the Botox injections.

Thursday, April 30, 2009

A Thousand Words Thursday - "Got Your Nose!"


Due to the spasticity in Cole's hands, when he gets excited his little hands ball up into tight little fists, with his thumb tucked in as if to be playing "got your nose".

In the above picture he is very excited and 'trying' to talk. He still is unable to actually form words, other than the very occasional "maamaa" when he is upset.

More often than not he only makes the ahh-ahh-ahh sounds with his mouth wide open like a baby bird waiting for a worm from it's mother.

I love hearing him try so hard to even get the volume forced out and I can hear that it is a happy sound. He definitely has NO problem getting the volume out when he is upset or screaming.

We have decided to go forward with the botox for Cole. I truly appreciate all the input I received when I asked for your honest opinions. I've madly been researching all that I could, and still researching. I really need so much more time in a day and probably still would never find everything.

I've spoken with Cole's pediatrician, all of his therapists and neurologists. And, I feel in my heart that this really is the best option for him at this time.

His therapist explained it to me like this... There may not be any major improvements, meaning this will not necessarily mean he will be able to just reach out and pick up a cup, but by reducing the spacticity in his hands and arms it will provide the perfect opportunity for productive therapy.

We provide therapy for Cole and we will repeatedly perform a task to try to retrain his brain that 'this' is how you accomplish 'this' task. For example, we may have him reach for his cup by stretching out his arm, then we have to pry his hand open to place around the cup and we have to hold the cup and his hand or the weight of the cup forces him to drop it and we will bring it back to his mouth. This shows him how to do the task of drinking that is so simple for us. In this process not only is he having to think about the movements but he also struggles with trying to force his tight arms to be straight and forcing his hand to open.

Right now the harder Cole tries to apply any movement in his arms or hands, the tighter they get and they draw or close up. We are hoping with the botox it will relax these muscles so he can move them in the correct direction.

While Cole does seem so young to receive the botox this is really the best time to 'teach' or retrain his brain how to move his muscles.

Once again, I truly appreciate all of your advise and apologize as I was unable to reply. Please keep Cole in your prayers, send positive thoughts or whatever you feel will help him have the best outcome. He is scheduled to be treated on Monday, May 4th and I will post about the procedure as soon as possible.

Monday, March 30, 2009


Today is the last day of CEREBRAL PALSY AWARENESS MONTH.

I wish I had all the answers to the many questions about cerebral palsy. I still have SO much to learn. Not only about CP but what I can do (or have Cole do) to improve his quality of life.

We have an appointment on May 4th for botox to be injected into Cole's hands and arms. I have been spending whatever time I can trying to research everything I possibly can about this and how it works with CP.

When we first scheduled this I had done 'some' research. I had talked to several friends that have children with CP and have tried it. Only one informed me it didn't not have an affect one way or the other, the others have only given praises stating how it has improved their child's mobility.

I felt pretty confident that this was truly the right choice for Cole. I was a little nervous about him being under anesthesia. This was more because of the bad memories/stress that I felt seeing him hooked up to machines and being monitored in the NICU than because of the botox itself. I also realize there is some danger with anyone going under anesthesia (otherwise why would they ALWAYS make you sign the release papers).

Well, this all changed when I bumped into a very sweet dear friend. I truly value her opinion and I know she would never give me ill advise. Her grand baby twin girls were in the NICU with Cole and we knew her son (the twins dad) BC (before children).

When I explained that we would be going in for botox she was very concerned and said she would NEVER let either of the girls receive botox. She explained a situation that had awful results from botox and all the research this affected person had done. She simply told me what she knew and begged me to please do my research. I know it was not her intent, but now....


It is a LOT of responsibility weighing on my shoulders right now. I have to determine if the good out weighs the evil. Do I pull back and NOT get him the botox because I am afraid? Afraid that this could paralyze him forever or that he will be in pain with no way to let me know? Would this take away his opportunity to be able to use his hands and arms?

Or, do I take the risk so that maybe he can push up and start to crawl? Would this be just what we need to loosen his tight spastic muscles so he can learn to feed himself or hold a toy and actually be able to bring it to his mouth? If we can accomplish this then maybe he could introduce new textures to his mouth (by putting all the things we think he shouldn't into his mouth)so we can give him solid instead of pureed food.

I have spoken to two neurologist (both from a very well known and well praised center and I have only heard good things about these doctors), Cole's pediatrician, five of his therapists, a LOT of my friends, the internet and God!

I don't know how to weed out my feelings to determine if it's God, my mother's intuition, or just me wanting to take advantage of every opportunity for even the slightest chance for improvement for my baby. My thoughts and concerns are completely jumbled.

I would love and appreciate if anyone reading this has an opinion, facts, or even a personal story (results from botox) to tell regarding botox injections for cerebral palsy, whether it is good or bad.

The way the botox works for cerebral palsy is it partially paralyzes the stronger muscles giving children an opportunity to stretch and strengthen the weak muscles. Injections and physical therapy will help the child achieve better muscle strength and balance.

Cole's therapists have said by loosening the tight (spastic) muscles they can be more productive in what they are trying to teach him and it will help him gain confidence (therefore making him a happy baby with less frustrations). This will also hopefully help him want to try harder since he will be seeing results.

Not every child will benefit from botox injections and only a set amount, depending on the child's body size can be given. This is why we will only be injecting (if we do) his hands and arms. They are the most spastic and although he does have tight hamstrings, he still has a beautiful step and he loves to walk in his KidWalk.

So, please, leave your comments. Give me any information YOU may have. Tell me what you would do if it were your baby. And feel free to leave me a link to your story or someone's that you may know.

see Seven Clown Circus

Friday, March 20, 2009

CP Awareness Day!

Today is National Cerebral Palsy Awareness Day!

- There is currently no cure for cerebral palsy and in most cases, it is not preventable. In over 50 years, treatments for CP have not progressed much at all. In fact, today, there remains little consensus among medical professionals regarding what causes CP or how best to treat it. Why do 800,000 or more Americans have CP, and yet we don’t know much more about what causes it or how to prevent it than we did a half century ago?

There are several different 'types' of Cerebral Palsy. The classification depends on the severity of her limitations, as well as what parts of the body and brain are affected.

These are the different types according to 4MyChild :
Spastic Cerebral Palsy

Spastic Cerebral Palsy is the most common diagnosis. If your child’s CP is “spastic,” her muscles are rigid and jerky, and she has difficulty getting around. There are three types of spastic Cerebral Palsy:

  • Spastic diplegia — Your child’s leg and hip muscles are tight, and his legs cross at the knees, making it difficult to walk. This kind of movement is frequently referred to as “scissoring.”
  • Spastic hemiplegia — Only one side of your child’s body is stiff. Her arms or hands might be more affected than her legs. On the affected side, her arm and leg may not develop normally. She may also require leg braces.
  • Spastic quadriplegia — The severest of the three, spastic quadriplegia means that your child is more likely to have mental retardation if diagnosed as quadriplegia. His legs, arms, and body are affected. It will be difficult for him to walk and talk, and he may also experience seizures.

Athetoid Dyskinetic Cerebral Palsy

Athetoid dyskinetic is the second most frequently diagnosed type of Cerebral Palsy. Your child will have normal intelligence, but her body will be totally affected by muscle problems. Her muscle tone can be weak or tight, and she might have trouble walking, sitting, or speaking clearly. She may also have trouble controlling her facial muscles and therefore drool.

Ataxic Cerebral Palsy

This is the least diagnosed type of Cerebral Palsy. Your child will have trouble tying his shoes, buttoning his shirt, cutting with scissors, and doing other tasks that require fine motor skills. He might walk with his feet farther apart than normal and have trouble with his balance and coordination. Your child may also suffer from “intention tremors,” a shaking that begins with a voluntary movement. For example, your child may reach for a toy, and then his hand and arm will start to shake. As he gets closer to the toy, the tremor worsens.

Hypotonic Cerebral Palsy

Unlike with other types of CP, you will notice that your baby has muscle control problems early in life. Her head seems floppy, and she will not be able to control it when sitting up. Her motor skills will be developmentally delayed.

It is suspected that this type of Cerebral Palsy is caused by brain damage or malformations that occur while a baby’s brain is still developing.

Mixed Cerebral Palsy

If your child does not “fit” into one of the above diagnoses, your doctor will consider him “mixed.” This is quite common.

Congenital Cerebral Palsy

If your child is diagnosed with congenital Cerebral Palsy, be aware that this is not a “type” of palsy, but rather it is a term meaning “birth defect.” In other words, your child’s doctor is saying that he developed Cerebral Palsy during development. It is not a condition that your child inherited from you or your husband or partner. And it is not caused by a medical error.

Erb’s Palsy

If any type of Cerebral Palsy can be attributed to a birthing accident, it is Erb’s palsy (brachial plexus palsy). According to the National Institute of Neurological Disorders and Stroke:

Although injuries can occur at any time, many brachial plexus injuries happen when a baby’s shoulders become impacted during delivery and the brachial plexus nerves stretch or tear.

If your baby has Erb’s palsy, he will have no muscle control in his arm; the arm will be limp and have no feeling.

Based on the nerve area that is affected, there are four types of Erb’s Palsy:

  • Avulsion — the nerve completely separates from the spine.
  • Rupture — the nerve is torn throughout but not from the spine.
  • Praxis/stretch — the nerve is damaged but not torn and could heal on its own.
  • Neuroma — scar tissue from an injury puts pressure on the nerve.
Cole was diagnosed as having spastic quadriplegia cerebral palsy. As stated above it is hard to definitely categorize each indiviual because each one is so different. Cole has low muscle tone in the trunk, neck and mouth. His arms and hands are spastic when he tries to use them but can also be loose at times. He has tight hamstrings but a beautiful step.

Regardless of what 'type' of CP Cole has the treatment/therapy we provide for him is the same. Cole receives therapy every single day. He has two days of physical therapy, occupational therapy, speech therapy, swallow therapy and swim therapy. We will be trying to add hippotherapy this coming August.

We are very fortunate that Cole does not have to have a feeding tube (even though he can not eat solid table food, we can puree it for him) and we are thankful he does not have seizures. Both of these could complicate things even further for him.

If you want to learn more about Cerebral Palsy please visit Life of Logan where my friend Keri (his mother) is hosting a contest.

You could also show your support by spreading the awareness of cerebral palsy by adding this button to your blog...or one of the others over at Life of Logan.


Friday, March 13, 2009

What's Your IQ?

Many people have asked about the intellectual ability of a person with Cerebral Palsy.

My answer is that I honestly do not know.

What I DO know is that with Cole there are obvious signs that he KNOWS what is going on around him. He attempts to communicate and, at times, he does it very well. If he does not like something he let's us know. When he is happy or likes something, he also let's us know. As I've stated in previous posts he is not verbal as far as speaking words and we are teaching him ASL (American Sign Language) by using Signing Time DVD's. He IS learning what we teach him.

Here is the information that I (and my friend Keri over at Life of Logan) have found and discussed, which was found in Wikipedia.

The full intellectual potential of a child born with CP will often not be known until the child starts school. People with CP are more likely to have some type of learning disability, but this is not related to a person's intellect or IQ level. Intellectual level among people with CP varies from genius to mentally retarded, as it does in the general population, and experts have stated that it is important to not underestimate CP sufferer's capabilities and to give them every opportunity to learn.

Spastic Cerebral Palsy, the most common form of CP, causes the muscles to be tense, rigid and movements are slow and difficult. This can be misinterpreted as cognitive delay due to difficulty of communication. Individuals with cerebral palsy can have learning difficulties, but sometimes it is the sheer magnitude of problems caused by the underlying brain injury that prevents the individual from expressing what cognitive abilities they do possess.

Therefore, I can not even begin to measure the knowledge that my child contains inside that complicated, beautiful head of his. But, I do know that he tries and comprehends what we say to him. I am quite sure he gets very frustrated 'trying' to express what he knows but his body not cooperating.

Don't forget - March is National CP Awareness Month!
Please help spread the awareness!

Sunday, March 8, 2009

The Face of CP

THEN:in the NICU,no clue of even the possibility of CP

NOW: dealing with the effects of CP

March is National CP Awareness Month!

Our baby recently turned two years old but at times, other than his size, it feels like he is barely one. Intellectually I know he is two and should be way ahead in his milestones. At times, it is very easy to forget as I still have to 'do' for him like I did my other two boys at about 8 months of age.

When Cole was 9 months old I was told he had Cerebral Palsy! I had absolutely NO idea what this meant, how it would affect him or how it would affect us as a family.

This is the month to spread the awareness of Cerebral Palsy.

~CP, the most common cause of motor disability in childhood, is a group of disorders that affects a person’s ability to move and keep his or her balance and posture.

~Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.

~The symptoms of CP vary from person to person. A child may simply be a little clumsy or awkward or unable to walk at all.

~CP is caused by damage to or abnormal development of one or more parts of the brain that control movement. The damage or abnormality happens during pregnancy, near the time of delivery or early in life.

~The part of the brain that is damaged determines what parts of the body are affected.

~CP itself is not progressive—the brain damage or abnormality does not get worse as the child gets older; however, the physical characteristics can change over a person’s lifetime.

~Depending on which areas of the brain are affected, one or more of the following may occur: muscle tightness; involuntary movement; difficulty in walking; difficulty in swallowing; and problems with speech.

**This information was found at Reaching for the Stars. Please help spread the awareness of CEREBRAL PALSY.

Thursday, February 19, 2009

A Thousand Words Thursday-Bath Seat

Here's another awesome and useful new piece of medical equipment we received last Monday.

This is Cole's new bath seat. It is called the Manitee!

Previously I had been using a baby bathtub that had a 'ring' that snapped in between his legs. This was still not an easy task, giving him a bath. Since Cole can't sit up on his own I would have to try to hold his already slippery body with one hand while washing his body and hair with the other.

With this bath seat he was sitting snug so he could actually 'play' in the water. He was so happy and having such a good time.

This seat has adjustable 'wedges' for his upper trunk and his hip area. It also has a lap belt I could use but I didn't have to with the wedges supporting him. And I can use a wedge between his legs so he doesn't slide down.

Cheaper Than Therapy
for more ATWT go to
Cheaper than Therapy

Tuesday, February 17, 2009

Wordful/Wordless Wednesday-New Wheels

What do you think? Cole's new wheels are awesome, right?

Monday morning I was scheduled to go in early to Cole's school so I could pick up his new bath seat (later post). When I walk in I see a pretty shiny blue KidWalk (walker) close by. So, of course, I start getting SO excited!

Yes! This was Cole's new wheels. His KidWalk had come in! We appreciated the use of the Rifton the school had let us borrow so Cole could get around but he has so much more fun and can actually maneuver his KidWalk a lot easier.

The Rifton (as do most gait trainers and walkers) has wheels that stick out in front and would get stuck on everything. This KidWalk has everything beside or behind him. Now IF he could use his hands he would be able to reach to open doors, turn the t.v. off and on (he has already been checking this option out), and easily get around corners.

This is so great to have this piece of medical equipment as it helps him feel a little more independent and let's me get other things done since he can move around on his own.

Today his daddy went to pick him up from school so I could go work out and when I pull up into the driveway they were outside playing. Cole was rolling around everywhere and quickly. He also was so much happier tonight and actually went to sleep easier.

This is a good work out for HIM and will help him build his muscles!

see Seven Clown Circus

Thursday, February 12, 2009

A Thousand Words Thursday-Comfort

Sweet Cole Dawson laying comfortably in his daddy's arms!

Doesn't he look so sweet and tiny laying wrapped up in his daddy's big strong arms? This and the pictures of my baby's laying on daddy's chest sleeping are my absolute favorites.

I honestly couldn't decide if I like the black & white or the color picture better. What do you think?

Cheaper Than Therapy
for more ATWT go to
Cheaper than Therapy

Wednesday, February 11, 2009

Wordful/Wordless Wednesday-Rifton

Shane and Cole

Cole loves it when Shane plays with him. Shane will help Cole get to the edge of the driveway and let him roll down the hill so they can race. Shane will be on his skateboard and Cole in his Rifton.

The Rifton helps support Cole so he can walk and get around places. This is a loaner from Cole's school. We are currently waiting on the KidWalk that we have ordered for him. Yes, of course, I will post pictures as soon as we get it in.

see Seven Clown Circus