Chorea or Basal Ganglia Dysfunction

It was that time again, to go to our appointment with Cole's neurologist. Everything looked good (I guess). Cole is healthy and the doctor feels like cognitively he is aware of his surroundings. He has classified the 'type' of CP that Cole has. He has spastic quadriplegic cerebral palsy. This just means he has spastic movements in all four limbs.

I was also told that he presents as having Chorea or Basal Ganglia Dysfunction.

Chorea is an abnormal voluntary movement disorder, which is caused by over activity of the neurotransmitter dopamine in the areas of the brain that control movement. Chorea is characterized by brief, irregular contractions that are not repetitive or rhythmic, but appear to flow from one muscle to the next. The quick movements of the feet or hands are vaguely comparable to dancing or piano playing.

Chorea is thought to be caused by damage to the basal ganglia. The basal ganglia can be divided into two fundamental pathways and, in some cases, chorea seems to result from damage to the indirect pathway.

It is suggested the the indirect pathway helps to inhibit unwanted movements, so it is possible that damage to this pathway allows the "escape" of movements that would ordinarily be suppressed. The random initiation of movements shows that the indirect pathway serves not only to suppress unwanted movements but also to prevent the initiation of movement. It is not known why some children with diffuse injury to the basal ganglia (such as occurs in cerebral palsy) develop choreoathetosis, while others develop dystonia.

Basal ganglia dysfunction is a problem with the basal ganglia, the deep brain structures that help start and control movement.

When the basal ganglia cells are damaged, there may be problems with the ability to control speech and movement. Difficulties with starting movement, sustaining movement and stopping movement are all possible when this area of the brain is injured.

Football

Shane going in for the tackle!

Cole having fun watching practice and playing with Zadie

Cole's girlfriend Zadie

No, that is not Cole playing football...but, maybe some day! That football player is his brother Shane getting ready to tackle his teammate at practice. Cole loves to go watch the boys tackling each other. It is great stimulation with all the action out there.

Shane's coach said it so right on our very first night when he told us the team name would be The Saints. He said this may be the only time we will honestly be able to say our boy is a Saint. LOL... If he only knew how right he was.

As much as Cole likes to watch the boys playing so rough, I have to admit that big smile you see is from him laughing at his cute little girlfriend Zadie. Isn't she a doll? I would turn my back and she would come to get me so I would scare her making a monster growl. She was giggling and would run away, just to turn around for more. Cole found this very hilarious. Nice to know I was such good entertainment for them both.

Cole's 1st time at Church

We have had so many firsts in the last couple of weeks. I wish I could say it was the first time he sat up by himself or crawled by himself or any of the milestones that a 'typical' child would have already reached.

I am both proud and ashamed to say this past Sunday, August 31st was the first time Cole has ever been to church. I have many different reasons or excuses, however you want to look at it, for not taking him before now. The biggest reason has been because I knew I would be called back to the nursery to get him because he would not stop crying.

As most mothers know, it is so hard to trust others with your precious baby, and it is even more so with your disabled child. But, because he has done so well, being such a big boy at school, I decided it was time to get back in touch with God.

I am not one to 'preach' (I hope to lead by example) and I have friends from all walks of life. I was always brought up in the church and know the way I should always be....but, I am only human and I have strayed from God several times in my life. I always find that He is always forgiving and takes me back with open arms.

It is so hard to explain the gamut of emotions I have gone through since the day Cole was born. I will admit that I had blamed myself for his disability (I thought it must be because of something I did)...I now know that I am not being punished but I am blessed to have him. Just look at how beautiful he is and I see how many people he has touched. He is such a special baby and he has shown me so much!

So, obviously, I felt like it was time for me to get back where I should be and I knew I needed to get Shane in too. Shane gets to go into an awesome class. He goes through a tube on one side of the door, climb steps, to slide down into the classroom. They have a moon bounce, and a little bank to earn pretend money by memorizing bible verses and other things in the class. They can take their points from the pretend money to the little store to get gifts (like at Chucky-Cheese's). Luckily, Brett has been going, for a long time, to a different church with his great group of friends. I am so thankful for the right kind of peer pressure and they are wonderful kids and have helped so much with transportation for Brett.

In the end, Cole was a good boy for his first day of church! He drank some of his bottle, then got to enjoy a ride in a huge stroller that seats 6 or 8 and then took a 20 minute nap. One of the three teachers was holding him when I came to pick him up.

School Days

Cole's 1st day at school!

Brett & Shane

It seems so strange to be completely alone in the house to work. It is so bitter-sweet! I miss all three of my boys (I know, I'm crazy). I have gotten so accustom to blocking out the noises in the background that, now that it is so quiet, I have to have some kind of noise to be able to stay focused.

Brett and Shane started their first day in the public school system this year on August 20th. Brett is a Junior and yet it seems like just yesterday that I was shedding tears on his first day of kindergarten. When Shane started pre-K, I was able to contain my tears but still felt the strings tugging on my heart. I thought he would be my last baby to be sending off on his 'first day'. He is now in second grade. Both of the boys were so independent that they wanted to go into the school alone on their first day. Of course, I had to walk in with them.

Cole is a whole other story. With him being my third child it was a little easier letting go BUT because he is so dependent on me it was so much harder. Let's talk about bitter-sweet...I have had my focus solely on getting my last child into Special Care school so that he can get the care he needs. I know that this is exactly what he needs, exactly what the family needs, but I realized I am as dependent on him as he is on me. I have become so used to all the appointments and rearranging everyone's schedules that now I am feeling slightly lonely and not quit as needed. I'm sure I will get over that once I get into the routine of getting everyone out the door and getting straight to work. I might actually even get to enjoy some 'family time' in the evenings since I won't be working all night.

So, Cole's first week went great! He seems to not mind when I leave him in the mornings and the only time I have seen him crying was the very first day and that was his normal 'melt down' time of the day. They have been putting him in his stander, a gait trainer and he has been eating from their menu instead of only baby food. I am so proud of him! We have worked it out so he will have individual therapy every day still and his teachers have been working with him too. They are awesome!

It is a wonderful feeling to know we have a place to take Cole that can provide therapy and work with him to improve on his disability.

We are going to really miss our friend, Tiffany, that took such great care of him up until now. I am so thankful that she loved him and cared for him regardless of his CP. She was so sweet and offered to watch Cole any other time we might need her. Looks like now Joe will have no excuse for not taking me on a date!

Pics from Fuji fundraiser

I apologize for taking so long to get these pics posted. It has been crazy around here. Also, I only have a few pictures because it was hard to take too many in the restaurant with everyone eating and I am not posting any pics of anyone who asked me not to. I want to again say "Thank you" to Nova and her family for the generous donation, to Lindy for bringing us together and to everyone who came to eat to help support Cole.

Restaurant Results

I know, it has taken me a while to find some time to squeeze in an update on the Fuji Sushi Restaurant fund raiser....but here it is finally.

First, I want to start with just how wonderful Nova (the owner) and her family are! She is truly one of the most beautiful people I have ever met (inside and out).

Nova had a table set aside for my little group and in the same area there was a table for the friends that Lindy and Kim (from Sooner Start) brought. The only other table on our side of the building was set up for the friends that Nova invited to join us. I believe each of our tables had 10-12 people. Then, there were the normal patrons on the other side.

Nova was so kind and brought Cole the cutest toy dog that plays music, says the ABC's, names body parts (hand, foot, ear, etc). It is so cute and he loves it. She also brought him balloons (which I believe Shane has completely taken over by now - Cole doesn't mind since it makes him laugh when Shane hits the balloon).

Now, I know you are dying for me to just tell you how well we did! I will say I think we did great! We received enough to pay for a few weeks of school. I would love to give you the exact dollar amount but I am not sure if that would be proper.

We had a great time and loved meeting everyone! I want to thank everyone that was there to help Cole and enjoy the awesome food. If you are local and make it in there...even if you do not like sushi (because I don't-can't get past the smelly seaweed) you will have to try the 'Fuji' sushi roll. It was delicious!

I will post some pics soon of our friends that made it.

Thank you Nova!

First Haircut

This past Wednesday we finally took Cole in for his first official haircut. Yes, I had snipped his bangs just a little to keep it out of his eyes but it is now completely cut off. He sat in his X-Panda seat, we caped him and started cutting.

I will admit that I would have let it keep growing as he had the cutest curls but he was hurting himself. Cole would play with his curls and when he would get a little upset he would start pulling. This would make him more mad (you could see that he was thinking 'who's pulling my hair?') because due to the spasticity in his hands he could not let go of his hair. It was such a vicious cycle. Poor baby!

Dad was glad I finally agreed to get it cut. He said it was starting to look like a mullet (he pulled it off well...LOL) and several people would say "oh, she's so cute". Ok, does he look like a girl? I don't think so!

Well, now my baby looks like such a big boy!

Snip Snip (video) and Buzz Buzz (video)

Love these curls!

Oh no! There they go!

Handsome big boy!