Wednesday, December 3, 2008
For those of you that see Cole, you know this to be true...for those that do not know, Cole seriously has OCD with this show.
Signing Time is a show that used to be on PBS television. That is where Cole first fell in LOVE with Rachel Coleman co-creator of Signing Time. Rachel is the mother of Leah and Aunt of Alex and they are the teachers on this show. And, I can't leave out Hopkins (an animated frog) is part of the show too. Hopkins cracks Cole up with his dancing and when he plays the drums (yes, a frog that plays the drums). He also loves the ABC's song that Rachel signs and even anticipates getting to the Z (he gets so excited).
We originally decided to teach Cole to sign as a way for him to communicate with us since we don't know if he will ever be able to talk (this is common with CP as he has low muscle tone in his mouth). At this time there are only a few signs that he can 'kind of' do, like 'more', 'eat', 'milk', and 'ball'. He doesn't freely sign these yet but does with prompting and assistance. Most importantly though is that he KNOWS what we are saying when we sign it.
How do I know he knows? If he wants milk and I ask (and sign) him if he wants to eat he will turn his head away. He will fuss so I sign to ask if he wants milk. He will immediately stop fussing and start licking his lips. This small amount of communication may not seem like much but it is HUGE for us! There is nothing worse than your baby trying to tell you something and you can not even begin to 'guess' what they want.
I do have to admit that I would have to get a little jealous of Rachel if I didn't see and appreciate just how much she helps Cole. I am starting to develope a mommy complex....Cole truly loves her SO much! The minute we play a Signing Time DVD he sill start to giggle.
Bad news - Signing Time is no longer on PBS! (you can read the story why by going here) Good news - YOU could buy their DVD's (for yourself and/or Cole) anytime by going to their website!
On this website they have all kinds of awesome products! We also llike using the flash cards with Cole. Like I said, he can not speak yet and due to the spastisity in his hands I'm not sure he will be able to fluently sign. He CAN, however, point to pictures of what he wants. For example, if you open his book with a picture of a ball on one side and a picture of a bear on the other, and ask him (we sign while asking) where the ball is...he will point to the ball.
For any of our family or friends that would like a great Christmas gift for Cole....he would LOVE to receive more (click here ->) Signing Time DVD's! We already have all of the Baby Signing Time products (DVD's, CD's, and flash cards) for him along with the regular Signing Time Vol. 4,5, and 6 (DVD's, CD's, and flash cards). We are hoping to eventually have the whole library of DVD's and flash cards.
Sunday, November 30, 2008
I brought my 'secret recipe' dressing that was handed down from Joe's side of the family...that everyone loves. I'm beginning to think that maybe they just don't want to be the one to make it. It IS very time consuming....but it IS very good! Mom made the usual Thanksgiving food and others brought desserts.
As you can see Cole loved the sweet potatoes (his fav), the mashed potatoes with gravy, and I mashed green beans for him. He still can not eat regular table food without gagging and/or losing it (you know what I mean). He did enjoy eating this instead of his baby food though.
My poor baby did have an upset tummy most of the day (not from the food but from the constipation that is very common for CP babies) so he was a little crankier than normal but he was trying hard to have fun anyway! Bless his little heart!
We also went to my brother's home (you can visit him over at AcreeStudios) to have our family pictures taken, which I will post later.
We have SO much to be thankful for! I thank God every day for sparing my beautiful baby(from when he was not even breathing when born) and letting us get to know him! I am thankful that Cole's life is not harder than it is and he has an awesome support system with lots of love from family, friends and his therapists and teachers! I know that even though he can not crawl, sit, stand, walk, talk or eat table food, he IS basically healthy and happy. I thank God for Cole's awesome brothers that love him just like he is and do not treat him any different! I am thankful to have my best friend by my side helping me, being the best Daddy ever! I could not do the things I need to to help Cole if I didn't have his help and support!
Thanks goes out to you, my blogging friends! I appreciate the support and understanding I feel from the kind comments you leave. I also appreciate all of the supporters that follow Cole's story and have been so kind and able to donate to his fund for his school. Without YOU we would not be able to send him to Special Care School where he is loved and he gets his therapies while I work (instead of me running him to a different therapy session every day). Therefore, you also help me keep my sanity in check (at least a little).
I hope everyone had a blessed Thanksgiving Day, enjoyed family and/or friends, and did not make themselves sick from eating too much food like I did! ;)
Sunday, November 23, 2008
I was on my own (only adult) to take Shane to a friend's birthday party at a fun place called Pump It Up where they have 2 rooms filled with huge aired up toys (similar to a moon bounce). Joe and Brett had gone to get groceries while I took Shane and Cole.
Cole was SO excited watching all the big kids coming down the slide I decided to see what he thought about going down himself. So, I grabbed a mat to slide down on and Cole and started the tough climb up. There are not actual steps to climb up but only little nubby bumps to try to keep from sliding back down. There is no hand rail to make sure you don't fall or to assist in the climb up (only a small rope to grab AT YOUR FEET to pull yourself up with). I'm sure it would have made for a pretty funny picture seeing me hold this very floppy child with the mat in one arm and the rope in the other to get to the top.
I did it! I was very out of breath, but I did it! I laid the mat down at the top and sat us both on it. WOW! It was a lot higher up there than it looked from the bottom! I let us start the slide down and I KNEW we were flying down a LOT faster than what the other children were (no mention of additional weight will be suggested here). At the bottom of the slide there is a short aired up wall that, I can only assume, is supposed to stop you. It did not! Yep, we went flying over the wall! Apparently this must happen occasionally since they had the padded mats at the bottom for us to land on. Oh, and I sacrificed my body to make sure my baby did not land on the bottom or get rolled on.
I was relieved to see Cole's original expression of "What the heck?" quickly changed to the happy expression of "Woohoo, that was fun!"
We had so much fun with that, that we moved over to another one. We had to climb through (as if in a tunnel) some small openings to get into the center of a huge area that had a big "platform" in the middle where children could use padded sticks to joust (I guess?). I held Cole up while we bounced around and he especially loved it when one of the jousters would fall to his death, flopping flat on his back and bouncing everywhere.
We all had a great time (and yes, it felt good to play like a little kid again)! I just wish we could play like this every night because it helped Cole sleep ALL night! Of course, I was exhausted too!
Thursday, November 13, 2008
Sunday, November 2, 2008
While we played and took pictures, Ms. Loretta and The Ninja (aka-Shane) took a trip around the school collecting candy. When they returned we all got to play and jump. Yes, even I climbed in for a little bounce too.
Check out this fun Halloween food I made (Mummy's & Halloween Cookie Pizza) and see how adorable these kids are! You will see Cole in a picture with two of his teachers, Ms. Loretta and Ms. Rachel, then in another with Ms. Jeannie. Ms. Starla is out having her baby. We just love these ladies!!
Friday, October 31, 2008
With each click in the search engine it is only pennies donated but imagine if everyone we have known used it and everyone they knew used it...and so on and so on! And, it cost you no money to use this to search the wonderful web! It is quickly becoming that time of year to start your Christmas shopping and if you do any shopping online (very nice with our very busy lives) then it does no harm to see if iGive has the place you are looking for. They even offer great sales and coupons. Best of all, you are not out any extra money and a small percentage of sales is donated from the store to the Cole Keathley Support Trust IF you pick his cause to support!
Please see the letter I sent below and feel free to copy and send to all of your contacts to help us be able to continue to send Cole to Special Care School....that he LOVES so much! Thank you!
I've found a cool way to raise money, every time I shop online or search the web, and I think you should check it out:
http://www.iGive.com & http://www.iSearchiGive.com
I'm using iGive.com to raise money for Cole Keathley Support Trust, every time I shop online at any of their 735 participating stores. And when I search the web through iSearchiGive.com (a new search engine powered by Yahoo!), I'm raising a penny or more for my cause every time. Guess what, even window shopping can help! When I visit online stores through iGive.com, each visit counts as an entry in their $50,000 Surfathon sweepstakes where I can win a prize for my cause! They're giving away $1000 in prizes, every month through the end of the year! I hope you'll join me for more chances to win - just create your free iGive account and check out their stores. You don't even have to buy anything!
If you do happen to make a purchase through iGive within 45 days of joining, they'll donate an EXTRA $5 to your favorite cause! With 735 stores in the iGive Mall and the new iSearchiGive.com search engine, it's easy to find the things you need AND raise money for a good cause.
HOW IT WORKS:
1. Join iGive.com to support Cole Keathley Support Trust
It's free, safe, and easy to join.
Don't feel like registering?
Take iSearchiGive.com out for a spin and raise a penny (or more!) per search. Just visit http://www.iSearchiGive.com and type "Cole Keathley Support Trust" in the "Select Your Cause" area
2. Shop through iGive.com's online mall
~ OR ~
Raise a penny search at iSearchiGive.com
The iGive Mall features over 700 trusted online retailers like Lands' End, Staples, NORDSTROM, JCPenney, eBay, Expedia.com, Barnes & Noble, QVC, & PETsMART to name just a few! You'll NEVER pay more when you reach these stores through iGive.com. And if you take advantage of the coupons and free shipping deals posted at iGive, you might even save a few bucks! Their newest service, iSearchiGive.com, is Yahoo!-powered search engine where each qualified search earns a penny (or more!) for your cause.
3. Watch the $ roll in for Cole Keathley Support Trust!
Up to 26% of EACH purchase through iGive benefits your cause, along with a penny (or more!) per qualified search at iSearchiGive.com. Make that first purchase within 45 days and get a bonus $5 donation, too! And the more stores you visit, the more chances to win a prize for your cause during the Surfathon!
Use this link to JOIN iGIVE FOR FREE and begin supporting
Cole Keathley Support Trust:
Don't feel like registering?
Take iSearchiGive.com out for a spin and raise a penny (or more!) per search. Just visit http://www.iSearchiGive.com and type "Cole Keathley Support Trust" in the "Select Your Cause" area.
I hope to see you at iGive.com soon!
All proceeds will help fund his schooling at Special Care where he receives the care and the therapies he needs to help him to learn to live with his Cerebral Palsy. You can see his blog for info about him at http://caringforcole.blogspot.com/
Please forward this info to all of your contacts and ask for their support for this cause for Cole Keathley.
Thank you so much!!
- Leanna and Joe Keathley
P.S. iGive.com would like you to know that all the causes at iGive.com have been listed by members for their own and others' benefit. They don't endorse the causes, and the causes don't endorse them. But I DO! So, c'mon, click on that link above.
Sunday, October 26, 2008
We hope you enjoy these pictures as much as Cole enjoyed his quick visit to the pumpkin patch.
On Friday, October 17th, Cole's school (Special Care) prepared for their trip to the TG Farms Pumpkin Patch for a morning of fun. They offered a petting zoo, corn & hay maze, hayride, pony rides, tricycle races, concessions, and a general store. As you leave, you are also welcome to pick a pumpkin to take home with you.
Since we missed our aqua therapy the previous Friday (due to being ill), we decided we would join the class afterwards. I knew the main event Cole would want to participate in would be the hayride. As you can see, he truly loved this. He was so excited through the whole ride. He was not too sure about the sun being in his eyes while I was trying to get his picture with a pumpkin though.
Saturday, October 18, 2008
He has had a cold for at least the past month and twice I had sent Joe with him to see his pediatrician. The first time I was certain he had an ear infection. We had been up most of the night and he 'seemed' to be trying to get to his ear. The doctor sent them home with "It's just a common cold.". Once again, I just knew 'something' was going on as his lymph nodes in his neck were swollen (Grandma was the one to point this out first). You guessed it..."It's just a common cold. No infection.".
The Sunday before last, I was forced to camp out on the floor in Cole's room. At one point his temperature reached 105.6. Now, before you think I am a bad mom for not taking him to the ER, keep in mind this is my third child and I know they would simply give him Tylenol or Motrin and make sure his fever went down. I figured he would be much more comfortable at home than sitting in a waiting room. So, I gave him meds and checked his temp every 15 minutes.
It was my turn to take Cole in to see the doctor the next morning since I had made Joe look silly twice already. I confirmed with our pediatrician that I am NOT that over-protective paranoid mom that I was starting to appear to be. I explained how high his fever had gotten, that he had screamed all night and would not eat or drink as his mouth was swollen. He checked Cole's ears, throat and chest and said there was still no infection but he would give us a prescription for Amoxicillon to try to get rid of whatever he had.
Before we left I remembered seeing a rash on his right knee and asked what that may be. When I pulled up his pant leg we could see that the rash now had pustules. The doctor examined the rash and determined it was shingles. Hmmm, strange! I thought that only adults got shingles, but apparently not.
I could not imagine that Cole had shingles in his mouth but knew his mouth/throat was swollen and he would not eat. Then, I find out he had been exposed to Hand, Foot, and Mouth disease. This is fairly common in daycare/school settings as it is a virus. Most adults have built up enough immunities so it is not as common for them to get this.
On the positive side of things both only lasted a little over a week. Cole is currently taking Neurontin (anti-convulsant/seizure meds) to help him sleep, he does not have seizures. I was told they often use Neurontin to help with the pain associated with the shingles. For that week I gave him a dose at both, morning and night. Now we are back to only at bed to help him sleep and both viruses are gone.
Monday, September 15, 2008
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.
Thursday, September 4, 2008
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.
Monday, September 1, 2008
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.
Sunday, August 31, 2008
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!
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.
Wednesday, August 20, 2008
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!
Saturday, August 9, 2008
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)
Friday, August 8, 2008
I am truly amazed at the generousity of total strangers!
Cole's speech therapist, Lindy, has been so kind to help get the word out about Cole. Through this, her friend Nova, that owns Fuji Japanese Restaurant, has been wonderful enough to offer to donate 20% of all sales from this Monday, August 11th to Cole.
We will be using these donations to help pay for his school.
Nova has gone way 'above and beyond' and sent out this "Fund Raising Announcement". Didn't she do an awesome job? We will keep you posted on how it turns out!
Monday, July 28, 2008
I spoke with Special Care School (see previous post) today and Cole is IN! She said she will call me by the end of this week after they have moved everyone but it looks like he may be starting the third week of August.
I can't believe it! I am so excited as I KNOW this will be the best thing for him but I am also SO scared because we have not gotten the donations we thought we would and we can not afford this on our own.
It is time to get Cole's story out there more and pray that we get donations in before he starts.
Sunday, July 27, 2008
We have now added speech therapy and swallow therapy to our busy agenda.
Our speech therapist, Lindy (from Sooner Start), comes to the house to work with Cole every other Tuesday. She is awesome! You would think, because of the name of it, that this therapy would be for speech, right? Well, Lindy does so much more.
In ST we do work on Cole's speech...at least the long term goal is to help him to be able to speak. Their are so many small steps before learning to speak. Just forming the mouth to make simple sounds and learning to use the tongue. We are introducing Cole to ASL (American Sign Language). This will be great for Cole even if he learns to speak with no problems.
Lindy suggested a swallow study be done to make sure whatever we put into Cole's mouth will go down properly and with no blockages. She wanted to make sure he didn't get any fluid in his lungs and see why he chokes any time we try to give him new foods.
We made an appointment at Mercy Hospital and had the swallow study. Luckily, everything went down the way it should. We met Amy, his swallow therapist, and she said she felt it was more of a sensory issue. Cole doesn't like new/different textures in his mouth so he gags when we try to give him table food.
Now, to swallow therapy! Amy (from Mercy Therapy) is a speech therapist but is working with Cole specifically on swallowing. Cole can not (or will not) eat anything but baby food, baby cereal and still takes bottles. He has only had his initial session but I feel he did great. Amy gave us a cool NUK nubby tool and she used a vibrating spoon to try to 'desensitize' his mouth. He even ate some small peach chunks. Way to go Cole!
Sunday, July 20, 2008
This is the amount of money we will HAVE to find a way to get donated so that my beautiful baby that has cerebral palsy can get the best possible assistance for him to try to live a 'normal' life.
We are trying to raise this money to send Cole to Special Care School (as stated in a previous post) and we have finally set up Cole's Trust account so that friends, family and even strangers (if they feel it in their heart to help) can donate.
We also previously posted about the help we are getting from John Connor...he has pledged to donate and to find donations from others through the baseball fields but we will still have to get donations to add to this and for years to come to be able to 'keep' Cole in this school.
Do you have an 'adopted' child from another country that you donate to? Do you donate to a charity not knowing where that money is dispersed? Why not donate to help a child you know and to a place you will 'know' every penny you donate will be helping this child. Even just $1 a week would help...no amount is too small. We would love and appreciate for you to adopt Cole and follow his progress here on his blog!!
You can donate by giving to the Cole Keathley Support Trust to any teller at any MidFirst Bank or mailing to us (for those of you that know us and have our address) or by mailing to....
Cole Keathley Support Trust
% MidFirst Bank
5800 N. Western
OKC, OK 73118
We want to THANK YOU! in advance.
Special thanks to Ed Daniel and John Conner!
Friday, June 20, 2008
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!
Sunday, June 15, 2008
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!!
Friday, June 13, 2008
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.
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.
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.
Wednesday, June 11, 2008
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.
Tuesday, June 10, 2008
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!
Monday, June 9, 2008
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!
Sunday, June 8, 2008
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!
Saturday, June 7, 2008
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.
Friday, May 23, 2008
Friday, May 16, 2008
Well, Cole had his initial eval for aqua therapy on May 14th!!
Woohoo - he LOVED it!! Ok, so it took a little convincing. He wasn't too sure at first. He definitely knew he did not want to float on his back. But, she was so clever and snuck it in there anyway.
The building with the pool is separate so we were the only ones in there. This is a very good thing for Cole....he is so nosy that we struggle to keep his attention with us normally. (I swear, he must get that from his father...lol).
So, this awesome pool is called an 'endless' pool. No, it is not like a doughnut, continually going around...it simply has some machine that makes 'currents' for some resistance which will make the muscles work a little harder. Let me tell you, Cole loved this part of it. Lisa (the therapist) was so awesome with him. At one point he had dropped his head as he was getting tired and when he came back up she was so sweet and gave him a big smooch. The most natural thing to do...as if her own child.
I had to get permission to take her pic with Cole and she doesn't mind so next week I will get pics of them working together then post the pics.
I was so impressed with how hard Cole worked and while I was drying off he sat so straight and tall while balancing on her knee. What a big boy.
I am excited to see what all these therapies have to offer and can't wait to see the results!
Thursday, May 15, 2008
Ok...so I have had the chance to tell my wonderful news to a few but thought I would go ahead and share for those I haven't told.
So, in all my research, and checking with friends, I found a school called Special Care (http://specialcareokc.org/index.php?pr=Home_Page ) that I want so desperately to send Cole. He would get therapy 5 days a week and play (more therapy) all day long.
So, it will be so awesome to find a way even though it cost $170 a week. I have seen the school and it is beautiful. In the class room he would be in there are so many opportunities for therapeutic play.
Well, I had mentioned it to a friend of ours, asking for fund raiser ideas. He has been wonderful and rolled with it. He started making phone calls and posting in a forum for the baseball community here since we are always at the fields with Shane.
We have had the great pleasure to meet our new friend John (the owner of one of the big ball fields) and he is doing all he can to help us make this happen for Cole...AND his family pledged to donate monthly for his schooling. So, he asked other teams to make pledges. A coach said his team would make a one time pledge...So, when I met him and his wife for the first time I could only tell them how much we appreciate this opportunity and give them both a big hug!
I just cried from the generosity of total strangers. I am still in shock!!
So, we went to tour the school and found out that Cole is #14 on the waiting list and all I can do is pray that at least 10 people have found other places and no longer will attend the school (unless I can find a way to bribe her - LOL). Otherwise, we will have to wait until the new wing is complete to have 45 more openings. This should happen within this next year.
I am so impatient! The sooner we can get him in the better. I think he will need to be in this school for at least 2 years if at possible.
I honestly want to thank our baseball team family for always being there since the day Cole was born (and even the newbies now) for always showing such support for us. It's great to have such good people in our lives. And I know there will never be a way to show our appreciation to John and his family and the baseball community for all they are willing to offer a total stranger.
Sunday, May 11, 2008
Well, I have finally decided to start a blog so family and friends can follow Cole's progress through life.
The easiest way for me to tell you 'Cole's Story' is to copy the letter I sent out to everyone when I mailed out his birth announcements. You will see this below.
Obviously, this was previous to even having a clue about Cerebral Palsy! We were told that he has CP when he was 9 mos old. Somehow, I knew before then but didn't have a name to put to it....just that mother's intuition that 'something' was wrong.
Dear Family and Friends,
I hope you enjoy these pictures of our beautiful new baby, Cole! I thought I would include this letter to explain his entrance into this world, for those of you that may not already know the story. He had a very rough start but is doing great now – thank God! I apologize to any of you men that may think this is too graphic… so be warned now! ;0)
Well, I guess I will just start from the beginning. We were scheduled to have a C-section (along with tubes getting tied and just a little cosmetic surgery on the previous C-section scar I already had) on February 23rd.
Luckily, Mom and John had come to stay the night on the 22nd so they could bring Brett and Shane up to the hospital the next day, right before the surgery.
Well, around 2:30 in the morning I felt what I thought was a really strong kick and had to go use the bathroom. So, I get up and was closing the bathroom door when I thought I was peeing on myself. I yelled at Joe (waking him up) that I thought my water had broke but changed my mind thinking it was just pee when it stopped. You have to understand that my water never broke with the other two so this was a whole new experience and I didn’t have a clue.
Joe decided to do research on the Internet (he helped me this way with any questions I had throughout my whole pregnancy). In the meantime, since I felt nasty, I decided to take a shower.
While washing my hair I have a major contraction. I breathe through it and start putting conditioner in my hair when I have another contraction. Joe comes in and tells me I better get out of the shower because that was only one minute between contractions. I was hoping to shave my legs but that didn’t happen! Gross!
Joe goes up and wakes up Mom and she has to help me get dressed since my contractions were so bad and close that I couldn’t bend down to put my pants on. I am so thankful that I already had all the bags packed and was ready to go.
In the meantime, Joe had called the hospital to tell them we were on the way. The nurse could not believe that my contractions were so close already and thought we had waited on purpose… so not the case!
We went out the door around 2:45 and got to the hospital about 3:15. I thought I was going to deliver in the car on the way there! I even made Joe run some red lights on the way (if you know Joe, this about killed him).
So, we get there and they are hooking up the IV and checking everything and tell me I am 90% effaced. In other words, the baby was NOT waiting! I just kept telling them that I was supposed to have a c-section and have my tubes tied. They started wheeling me back to the surgery room and after I changed tables I told them the baby was not waiting for the surgery and I would have to deliver him.
Just in time, the doctor shows up and I start pushing. Only 2 pushes for the head and 1 for the rest and he was out at 4:01 am.
I realized I couldn’t hear him crying and started asking why. They told me he was having trouble breathing and I could see them carry him over to the bed where they take the babies. I could see the anesthesiologist sticking a tube down his throat and pumping the big bulb on the end (just like you see on ER on TV).
Joe could see Cole better and said he was very purple when he was born but was a normal color just as soon as they got him breathing again. From that point things are a little blurry for me since I was upset.
Apparently, I had developed pre-eclampsia (pregnancy induced high blood pressure), which was a total shock since I was just fine through my whole pregnancy – even just the week before. At some point my placenta had torn away from the uterine wall and they didn’t know how long Cole had been without oxygen.
I was taken to my room and, at a later time, Cole was brought into the room to tell us bye before the ambulance took him to a different hospital that has the best NICU (neonatal intensive care unit).
I had to stay an extra day to get my blood pressure under control and Joe had to push me in a wheel chair for a week after I was released. Poor Joe had to make all the phone calls and travel back and forth between the two hospitals, worrying about both of us. I can never express how much I appreciated the kindness and help of so many of our friends that came to visit, expressed their concern, and even brought us food during the 21 long days that Cole had to stay in the hospital.
It was so heartbreaking having to leave everyday without our baby in our arms but it helped to know we had so many people giving us support and praying for us. The doctors were watching Cole for seizures (he had tremors but no seizures) and for neurological problems. Throughout his stay he had tubes and monitors attached to him and they ran EEG’s, EKG’s and CAT scans. On the EEG’s they saw irritability but no seizure activity and each one was improved from the one before. This was a very good sign. They were giving him Phenobarbital (an anti-seizure medication) to help him. The EKG showed he had a shadow or small hole on one of the ventricles to his heart. They said this was not an extremely big deal as it was common and should close on its own. Cole was having some trouble sucking on a bottle to eat, as he had always been fed through a tube, so I started finger feeding him until we finally got him to eat like he was supposed to.
When he was released from the hospital they seemed to still be concerned about developmental problems and we had to set up some follow up appointments. Since then the neurologist has released Cole saying he will be just fine and we are weaning him off the Phenobarbital. The cardiologist said he couldn’t hear a hole in his heart and thinks it has closed up. We will be taking him back for and EKG when he is 6 months old just to make sure.
His pediatrician says he is just like the other two “Keathley” boys; he just caused us a few extra gray hairs in the beginning. So, other than the colic from 9:30 to midnight every night, all is well in the Keathley household.
Again, I want to thank everyone for everything they did to help us get through everything!