Wordful/Wordless Wednesday-We Survived Botox

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)




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

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



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!"

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.

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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.

A Thousand Words Thursday - "Got Your Nose!"

"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.

Botox

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....

I AM VERY SCARED!

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.

for more WORDFUL WEDNESDAY
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