Take me out to the ball game!

Did I mention we made a trip to Texas?

We did! Joe coaches Shane’s (our six year old) baseball team and one of our parents gave us tickets to a Texas Rangers baseball game. Wasn’t that cool?

We made it a weekend vacation!

Everything was going great. Cole was in a good mood. The seats were behind home plate. We were up a little high but it was great since we were in the shade.

Then, all the loud music and announcements were blaring out of the speakers right behind us. Cole was no longer a happy camper. Joe took him down away from the noise for a little while and when they came back and he settled down, all was good again.

The Rangers ended up losing to the Houston Astros, 5 to 4!! Man, and they were on the come back!

Chiro

Our Chiro, Dr. Wes Hill, does treatments on Cole’s neck and trunk muscles to help strengthen them.

I don’t know enough of how this works but I sure know anything additional will not hurt. All I know is I take Cole into the office and he does some adjustments on his neck and back while I hold him in my arms.

Dr. Hill has known Cole since the day he was born (his family came to see us at the hospital). I completely trust that he would do everything in his power to help Cole any way that he can. He has been kind enough to give me this link to give additional info on how chiropractic care can help Cole. Please check it out too at Cerebral Palsy Source-Chiropractic and Cerbral Palsy.

If you read my previous post about the Special Care school then you may remember me mentioning a friend that hooked me up with John Conner (the owner of the baseball fields that is going to help us raise money for Cole). Wes is this person. Thank you for the hook up Wes!!

Just a swingin'

Wheeee!!!

Cole LOVES his new swing!

His PT, Christa, put him in this swing at the beginning of therapy. She wedged a boppy in around Cole so he would not sink back into the swing. She said this is good to get him to use his trunk and neck muscles to sit up and will teach him balance.

SO, after she advised me that she has only found these at the Ikea store (cannot find online), we happened to be making a trip to Texas (the closest store to us) and ‘swung’ by to pick one up.

Cole has a blast playing in his new swing but has to fight his six year old brother, Shane, for a turn.

In-Home Hippo Therapy

Another therapy I had not previously heard of is Hippo Therapy!

Hippo therapy is therapy provided by riding horses. This also is supposed to strengthen the trunk and teach balance.

I called around in our area and found a place, Coffee Creek Riding Stables, that is only about 2 miles from my house. Not only is it really close, it is FREE! Yep, you read correctly! Can you believe it?

The downfall – I cannot send Cole until he is two and a half.

I guess he will not be able to ride these horsies until the end of next summer. So, I came up with a plan to ‘make do’ until then. Our own ‘In-home’ hippo therapy.

A friend on Cafémom (Krista), had posted a picture of her cute little boy riding on a little pony. She was kind enough to send me info so I bought one for Cole. It is great because it has a little ring to help hold him on the horse and it can rock and/or bounce like a horse.

I still have to hold him up since he can’t sit unassisted but he has fun bouncing.

Kinesio Taping

Do you know what Kinesio Taping is?

I didn’t either until I read about it on Cafémom. This info was posted in a group for Cerebral Palsy.

Before I could even ask about kinesio, Cole’s PT, Christa asked if I wanted to try this for Cole.

Christa gave me some info about this and explained it was originally derived from a chiropractor and they use a stretchy tape to wrap or apply to the necessary area. For Cole, Christa uses the tape to make an X across his belly and another strip under his belly to help strengthen the abdominals.

You would think Cole should be sitting on his own soon with all the help we are trying for him.

PT & OT

Physical therapy and Occupational therapy.

Since finding out that Cole has CP we decided to also seek out outside therapies in addition to what we were getting from our EI program with Sooner Start. Our EI program came only every other week for PT.

We had bumped into a sweet friend from the past in the NICU (his twins were there at the same time Cole was). He had mentioned, to Joe, that he had been receiving therapy from Jim Thorpe Rehab for his girls. So, I made some phone calls and started Cole there too.

We started out with his OT, Jill, until she went out on maternity leave. We will be hooking back up with her as soon as she is able to come back to work. I will add more info on her work and some pics when she returns.

Before Jill left she got us started with working with Cole’s PT, Christa. As you can see in the pics, Cole loves the swing that she puts him in. He must really love Christa cause he feels free to ‘tell her all about it’ during therapy. I love the way she works with him and pushes him to try a little harder!

Right now we only get this therapy once a week but we are about to add OT so he will get this therapy twice a week from here. He also gets the PT from EI every other week and ST from EI every other week. Then, he gets the aqua therapy once a week and Chiropractor care once a week. This gives Cole 5 different treatments/therapies a week.

MRI

Ok, so Dr. Hille suggested having an MRI of Cole’s brain. This would allow them to see what (how much) damage was done to Cole’s brain and what areas were affected.

Easier said than done, apparently!

We make our appointment to attempt to perform this MRI without having to completely knock Cole out under anesthesia. The day comes and I make sure he has not slept all day (not a problem since he NEVER sleeps).

We get there and they give me a liquid to help make him sleepy, I give him a bottle and he totally zonks out. He is crashed!! We go back to the ‘room’, strap him all down, wedge things between his head and the machine and lock down this contraption over his head. It’s all good….Cole continues to cut some Z’s while they roll him in the tube.

Whaa, whaa, whaa….a stupid siren sound and loud banging starts!

What the heck? My poor baby wakes and is freaking out (reasonably so)!

So they bring him back out, take the contraption off his head and let me sooth him.

We go through this 4 different times with me feeding him and cleaning him up in between each time due to this literally scaring the crap out of him! Finally, it is decided, this is not going to work without the anesthesia.

In December we have the MRI (under anesthesia)done.

The results come back and show no visible signs, on the MRI, of brain damage.

This is awesome! Right? Does this mean he DOESN’T have CP?

Nope – that is not what that means. I am advised that he does still have CP but the damage was just so minor that it was not visible on the MRI.

Well, that is great news! The only thing is, whether it shows on the MRI or not, it does not change the fact that he does have CP and he still cannot do any of the things he should be doing at this age. So, I tend to feel like this MRI was useless…it only confused me more than I already was and cause me to go on an emotional roller coaster ride – again!

Sooner Start

I guess I “put the cart before the horse” so to say. We were getting help from Sooner Start before we even knew to start any other therapies. Sooner Start is the early intervention (EI) program that is offered here where we live.

When Cole was released from the NICU at the hospital we were hooked up with this EI program. The first step was to meet our case worker (I guess that is what I would call her) and she scheduled for an evaluation to see if Cole qualified to be on the program. They had a couple of people come out and he qualified for help as he would not follow a pen light (normal since he was so young, but ok since it led us further to where we are now).

Since Cole qualified we were assigned a wonderful sweet lady named Kim (see pics below). She is the kindest person ever! She originally just came in once a month to check in on us. Then one day she asked if I would mind if she brought a PT (physical therapist) in to look at Cole.

So, Kim brought Lisa (whom has since moved out of state) in to see Cole and asked me to take him back to his neurologist and see what he thinks since he had previously released Cole (or so we thought-that’s a whole other story).

It was decided we should start PT for Cole because he was obviously having a hard time opening his hands. Lisa (Sooner Start) would come out to the house to do his therapy and show me things that I could do at home to help.

This is when they gave us these little neoprene splints (Bendix ??) to put on his hands to help hold them open. He still wears these and I think they have helped a lot. He does get frustrated sometimes with them on but since it helps, he just has to suck it up and work with them on.

Once Lisa left, Kim brought in Mary for his PT from Sooner Start and she works her magic with him every other week. We have also met with and will be starting with Lindy for speech therapy (ST) on the opposing weeks to strengthen his muscle tone around him mouth. We hope this will ensure that he can talk later but just in case, we are also working on sign language (also another post later).

We are in debt to Kim, Lisa, Mary, Lindy and Susan for all that they have shown us. I would not have thought to take him back to his neuro had Kim not asked to bring in Lisa because she saw something going on! Thank you so much guys!

Bubbas

I guess I really should have introduced Cole’s brothers before now! Better late than never, right?

Both of his brothers are awesome with him! He loves them so much! And they love him!

The oldest, Brett, will be 16 this July. He is such a great helper! I don’t know if I could have kept what little sanity I have without his help. As I mentioned before, we knew something was different long before we got the official diagnosis for Cole. There have been so many times I have had to ask Brett to hold his brother, to feed his brother, to change his brother (only the pee diapers, of course), just so I could fix supper, do laundry or even just go to the bathroom!

I have previously mentioned Shane, which will be 7 in this month, June. Since he is too little to be able to pick up Cole without help, he helps by entertaining Cole. He also is good about bringing things to me when I am changing Cole and taking out the stinky diapers for us (whew, I am so glad I don’t have to do this…lol).

Both of the boys make Cole laugh and hate to hear him upset. They help with home therapy by playing with him. They are awesome big brothers!

CP (Cerebral Palsy)

Cerebral Palsy?? Are you sure? What do you mean by mild? What exactly is that?

OH MY GOD!! What do we do now?

These are just a few of my first thoughts that first day we went back to visit Dr. Hille, his neurologist, after we “thought” we had been released.

I always “knew” something was wrong! I didn’t have a clue what it was called. I did know that my beautiful third child was completely different than his older brothers.

The two older boys have always been like night and day, very different. One quiet, laid back, very shy (in case you can’t figure out which one this would be, it is Brett-lol) and the other…well, NOT all of these! Shane (the one that is NOT) is my go-getter that would never know a stranger and never stops talking.

As different as the first two were, I knew Cole was different in his own way. Bless his sweet little heart!

I remember when Cole was in the NICU and he NEVER (I promise, never) cried and we wanted so badly (as my dear friend Jennifer is so quick to remind me) to hear him cry. I guess this seemed like a sign of normalcy for us. Like he would be okay if he acted like the other new babies.

Let me tell you, we sure questioned what in the world we were thinking as soon as we were released and brought him home. He literally screamed all the time! God, what am I doing wrong? I tried to nurse him and there was no way he was doing that (I thought it was me but realized later that it was due to the low muscle tone in his mouth).

Okay – back to the CP… so I was in such shock after hearing those words for the first time! I will admit, I didn’t have a clue what CP was. My single first thought …well, to be honest, I don’t know my ‘first’ thought. I had such a flood of thoughts and emotions, I could never put into words. This is why I want to bring awareness to whomever I can by telling Cole’s story!

Cerebral Palsy is damage or trauma to the brain! This affects every 1 in 278 people. It can be caused by many different things but Cole’s was caused by the lack of oxygen during his birth. It can range in tremendous degrees from mild to severe and can affect each person differently. Cole has not been diagnosed with the ‘type’ of CP he has but he does have low muscle tone in his trunk, neck and mouth with spasticity in his hands, arms and legs.

Cole is 15 months old now and he cannot sit unassisted, crawl, stand, walk, or talk. They cannot tell us for sure if he will ever be able to do any of these things. This is why we will do everything we possibly can and know of to get him help to try to learn these things.