Refresh Everything

Each month pepsi is giving 1.3 million in grants to people/groups/organizations that have refreshing ideas. Each idea is voted on by people like you and in the $250,000 category, the top 2 ideas receive funding. It is a very refreshing program.

Now, I need your help. Colton has been receiving vision therapy from VIPS (Visually Impaired Preschool Services) since he came home from the NICU in May 2008. VIPS has been serving children who are blind and visually impaired for 25 years in Kentucky. Ms. Dixie (his teacher/therapist from VIPS) has been a blessing to say the least. There are two offices- Louisville and Lexington. The teachers travel most of the state to provide therapy and education to the children in their homes. Louisville's office started a preschool program to provide more services for their children with visual impairments. This state of the art facility is not only used for the preschool but also provides programs for children birth to three that are visually impaired. The Lexington location, wants to do the same for their children. The problem is their current building will not house a licensed preschool. To see this dream come true to offer more programs and services to children in the Central and Eastern areas of KY they will need to move to another facility. With your help, this new facility will provide children with an enriched educational environment that will meet their needs for hands on learning and meeting their developmental milestones.

Needless to say, this would greatly benefit the visually impaired children here in our area and you can make this happen by voting for VIPS' idea. How? you ask. It's easy! You can vote once a day (from now to Dec. 30th) by visiting here AND by texting 104721 to 73774. You can vote online as well as by text everyday. We have a great opportunity to help these children be better prepared to face a world full of challenges.

Questions

I have so many questions, most which will not be answered for a long time, some may never be answered.

Questions like...

Why did my son have to be born at 23 weeks and spend the first six months of his life in the hospital?

Why did ROP have to destroy his retinas to the point of blindness? Why does he never get to see the beauty of a rose or the color of the sky?

Will he ever have a girlfriend or even a date? Will he ever get married and enjoy the pure happiness of being a parent?

Will he ever talk?

Will he ever walk?

Why us? Why HIM?

These questions, along with so many more, haunt me everyday and everyday I have to remind myself that today he is happy and alive and healthy and for today that is all that matters.

Getting Back to Normal

Sorry that I haven't updated much lately, we've all been working pretty hard on March of Dimes stuff around here lately. Team Colton is at it full force!

Colton is almost back to normal, I'd say about 80%. He still keeps his eyes closed and head down a lot. I asked Dr. Trese about it during our latest trip to Michigan and he assured me that Colton is just keeping his head down and eyes closed trying to keep us from giving him his eye drops, he still hates them with a passion. The Doc was still very optimistic for improved vision, getting a strong red eye response in both eyes. This means that nothing is blocking the retinas now, like the scar tissue was before the surgery. I asked a couple time if he could tell me just how much "improved" we were talking and he gave me the same answer that he did right after each surgery... "We will just have to wait and see but things look good". Like I have said before, it will take up to nine months for us to know just how well the surgery worked, talk about anxiety, shew!

In other news, Colt got his first "real" haircut yesterday. He won't quite look up for pictures just yet so I will have to try and get one soon, he looks like such a big boy. Daddy and I did it because we knew he wouldn't let anyone else near his head right now. I held him while Daddy cut his hair and guess what... he loved it... who knew?

He is doing so well at cruising the furniture, I have a feeling that one day he will just take off, once he gets going there is no stopping him, he's a fighter.

There isn't much else to report, we are all (currently) happy, healthy and thriving.

My Little Alien

Colton has to wear eye patches over both of his eyes when he sleeps so he doesn't mess up all the hard work the Docs have put into his improved sight. He likes the eye patches just about as much as he does the eye drops... none at all. I think it's kind of cute though, I call him my little alien.Now all we need is a flying saucer to transport us back home in a fraction of the time it will take us by car tomorrow!

A pat on the back for Dr. Trese

Don't you feel so sorry for him? We do... so he is being super spoiled right now. All good news from the follow up appointment this morning. A light was shined in Colt's right eye and he flinched! He has never been able to see anything out of that eye before. It was very exciting. After the surgery yesterday Dr. Trese examined the other eye that he had operated on earlier in the week. He told everyone in the room that he should pat himself on the back for the job he had done to Colton's left eye. Apparently, it looks THAT good. Next, we have an appointment on Tuesday in Dr. Trese's office then we will hopefully be headed back down south. I miss my old Kentucky home!

***By the way, I am aware that I forgot to post this weeks braille alphabet letter. To be honest, it completely slipped my mind with all that has been going on. We will resume with the letter 'B' next week. Have you been watching for braille out in the world?I have!
Send me your pictures by email or twitter and I will share them here on my blog.

Round Two (second surgery in Detroit)

It's a cold Friday morning in Detroit and we are all up getting ready to leave for Colton's 2nd eye surgery at Beaumont Hospital. Monday's surgery was a victory we are hoping for a repeat today. Colton's right eye (the one they will be working on today) needs more work than the left. Dr. Trese thinks the retina might have a hole in it which is why they took blood plasma from me on Tuesday, they will inject it into his eye and, from what I understand, it will hopefully act as glue to help repair the retina. They will also try to remove scar tissue from previous surgeries just as they did with during Monday's operation.

Two surgeries in one week is a lot for anyone especially for a two year old but he is hanging in there. We will have a follow up appointment on Saturday and on Tuesday then we will be able to go home. But we were informed on Tuesday that we will have to come back to Detroit in about 2 weeks for a short stay and then on and off again for the next several years. As a result of this news, I have left the 'donate' button on the right side of my page. We have already receieved so much help that I hate to have to imply that we need more, but we do. My heart goes out to everyone who have already donated to us, I hope one day we will be comfortable enough to help others as they have helped us. I also understand that times are rough and a lot of people need as much if not more help than we do, prayer and encouragement is just as important to us as monetary support so we are thankful for everyone who has lended a hand in any way they could.

I plan on having internet access during tomorrow's procedure so I will be sure to update twitter.

Wordless Wednesday - Better Late Than Never

Time for eye drops...... poor little guy.

V-I-C-T-O-R-Y

Yesterday was the "Big Game" and I am proud to say Colton and his team came away with a win. Dr. Trese came out to talk to Seth and me immediately after surgery and told us that things went BETTER than expected. The doctor was able to remove a lot of scar tissue that was left over from Colton's surgeries in the NICU and he was able to spread back out Colton's folded retina. We definitely have improved vision!!! We won't know exactly how much improved for several months, it takes that long for the retina to get as repaired as it is going to get. However, today he has already been squinting more than usual in bright lights, we all notice just a tiny difference in how he is acting visually. This is very reassuring to us.

This morning we headed over to Beaumont for a follow-up appointment. Dr. Trese was still very optimistic as he examined Colton. Our boy does have to wear an eye patch for 2 weeks at night and arm restraints when he is not being held to keep him from harming his eye. He is on eye drops 4 times a day and restricted activity. His eye is black but he is eating and drinking normally, his mood is as well as can be expected after the events of this week. He does look pretty pitiful.
During the appointment today I had to give blood plasma that they will inject into Colton's right eye during Friday's operation. I have a packet to read that explains why they need to do this, I'm slacking and have not yet read it but when I do I will compose a post explaining exactly how that is used. I AM NOT GOOD WITH BLOOD so I was shaking and very nervous when they did this. Colton went to sleep so Seth stayed with me and helped me with my fears. It went okay. I was very tired and dizzy until we made it back to the hotel, after a 3 hour nap I felt much better. It wasn't as bad as I thought it would be, my mind was just playing tricks on me.

As you know, this victory against ROP is not complete just yet. On Friday they will operate on his right eye. We are hoping we come away with a win once again. No matter what, we know that Colton and his team have exceeded all of our expectations.

The Big Game (First Surgery in Detroit)

Our family loves sports, Seth played football as a boy, in high school and then in college. I was always on a cheerleading or dance team so I was right in there with all the action. A lot of things in life, like Colton's first surgery here in Detroit, can be compared to a big football game.

We have prepped and practiced none stop for the last several weeks, you have helped us, our biggest strength on the practice field? Prayer, no doubt. Colton's cheerleaders; friends, family, blog readers, have helped us prepare for the "big game". You have prayed, sent in donations and offered us words of encouragement, we couldn't be more prepared and that is in large part thanks to each of you.

Now, the day is here, the day of the "big game". It takes place this morning around 11:00 a.m. The home team, Retinopathy of Prematurity. This team is big, powerful and doesn't like to play fair. The opposing team, Colton and his team of Doctors here in Michigan. Colton's team is heading into the home of ROP (his eyes) with every intention of teaching that nasty ROP a lesson. This game is evenly matched, it could go either way. But we all know Colton, the quarterback of his team, is a tough one, he's a fighter. His record 5 - 3, four successful operations and three losses, the latter all against ROP. The good news is we've got a new coach, his name is Dr. Trese and he is one tough cookie, the best of the best.

I will be a spectator today, Colton's #1 fan. Sitting on the front row, cheering as much as I possibly can. The best thing about being his #1 fan... I get to love and cherish him always, win or loose.

And now... it's time to head to the "big game". Wish us luck.

On the Road Again (to Detroit)

By the time you read this we will be in the car headed to Michigan for Colton's 2nd trip to visit Dr. Trese in Royal Oak. On Monday morning they will do an exam under anesthesia at Beaumont Hospital, then, as long as the doctor still feels that the surgery will be beneficial, he will proceed. We will visit Dr. Trese's office on Tuesday morning for a follow up visit and to discuss how the surgery went. The next step will most likely include surgery on the opposite eye next Friday, with a follow up visit on Monday morning. After that we will be free to head back to Kentucky. I have no clue what exactly the next week will bring for the Darnell family but we certainly will know a lot more (good or bad) about Colton's future eye sight after it is over.

I am still fighting with myself on the subject of hope versus over-optimism. Right now I am sticking with a 'hope for the best, prepare for the worst' mentality. Honesty, I have always known that we have so much to be thankful for. The fact that Colton is alive is miracle enough for one lifetime. I am human though, I can't help hoping that God has at least one more in store for us all.

As far as I know, we will have internet access at the hotel so I will be sure to update everyone on here, facebook and twitter as often as possible. It is the least I can do after everything you all have done for us. I know I have said it before, but we really are so amazed and thankful at all the prayers, donations and words of support & encouragement we have received. It means the world to me to know that so many people care about my family and especially my little boy.

THANK YOU, THANK YOU, THANK YOU, I couldn't possibly say it enough.

Almost Home: Results from Detroit

First I would like to say 'Thank You' to everyone for your thoughts and prayers during this time, they really do mean the world to us. I’m writing on my MacBook as we are heading back home to Kentucky. Currently, we are driving straight through Ohio and frankly it is the most boring ride/drive ever. We have had a very interesting time in Royal Oak, Michigan.

Earlier today, after Colton’s VEP test, we met with Dr. Trese to discuss the results. The VEP test determines if the retinas are working by measuring what Colton can see through his brain waves. This was an important test because if Colton’s retinas were completely detached and therefore not working, we would know that no amount of surgery could help his vision. Well... BOTH of Colton’s retinas showed a moderate amount of activity!!! This means they are still semi-attached and Dr. Trese feels it would be beneficial to go ahead with surgery in each eye to improve Colton’s vision. He is hoping that afterwards Colton will be able to see the outlines of shapes and have better light perception. We are all very giddy here in my little red Ford Focus.

So, the next step is an exam under anesthesia at Beaumont Hospital on January 25th followed by one surgery and then a follow up appointment on Tuesday. Friday January 29th Dr. Trese will preform surgery in the other eye. After a follow up appointment on Monday February 1st, will be free to head back to Kentucky. We are going to make it a little vacation in the middle of winter, in the blistering cold of Michigan, kind of unconventional, but that’s just how we roll.

The Sun Will Come Out Tomorrow

IT WILL COME OUT and hopefully with all that sun we will encounter very little snow.

I finished packing last night for Colton and myself (Seth has yet to begin, MEN!) and just programed our trip into the navigation system. My mother is going with us to help out since this is Colton's first time traveling. Sometime tomorrow afternoon/evening we will arrive in Royal Oak/Detroit, Michigan, check in to the patient family housing, get some rest and arrive on time (hopefully) for our appointment at 7 a.m. the next morning. First, Colton will undergo some tests then we will meet with Dr. Trese, the best of the best when it comes to pediatric retina disorders like ROP. From there... well I'm not sure, after that it's pretty much in the Lord's hands.

What do I hope will happen? Well, I would be lying if I didn't tell you that deep-down I wish Dr. Trese would have some magical cure and Colton's vision would be restored to what it was before the nasty ROP attacked and demolished it. I would also be lying if I told you that was even a possibly at this point. Best case scenario, Dr. Trese will be able to perform a surgery that will improve Colton's vision. Improve meaning he will possibly be able to read large print and see well enough to get around without a cane. Worst case scenario, we are out a crap load of gas money when Dr. Trese tells us there is nothing that can be done BUT we will still have our amazing, wonderful, handsome little boy who is, in my eyes (and soooo many others), just about darn perfect!

The sun WILL come out tomorrow because my sunshine comes from a certain little boy in the next room, sleeping peacefully.

Up North

For some time now we have been trying to get an appointment with Dr. Michael Trese (the best of the best as far as Pediatric Ophthalmology is concerned) in Royal Oak/Detroit, Michigan. As many of you know, Colton is blind due to Grade 4 Retinopathy of Prematurity in both eyes. We have been told that if anything at all can be done to improve (NOT FIX) his eyes, Dr. Trese is the one to see.

Well, the date has been set. We will travel to up north on January 4, 2010 and stay for 2-3 days depending on Dr. Trese's findings. First, Colton will undergo some tests to determine if the portion of retina that is still attached is even working. Then, we will discuss our options as far as surgery is concerned. Colton has some scare tissue blocking his left retina, it is possible the tissue could be removed if it is determined his retina is still working behind all that mess. At best we are hoping for improved vision, not a magical fix, this means reading large print instead of relying solely on braille or walking without assistance as opposed to using a cane. Ultimately, these small things could mean a simpler life for our boy but we know he is quite capable of adapting to life with what tiny fragment of vision he has now, he has already proven that time and time again.

I am not going into this with any hopes or dreams, if something wonderful happens, then great, praise God. If not, well, we just go on living life as we are now, perfectly happy and healthy and full of love, praise God for that too.

***On a side note, please pray for good weather, we are driving. k? Thanks.

Optimistic?

April 22, 2008
They took Colton to surgery about an hour ago... Seth and I made
it here early enough to spend a little time with him before he went
down. They haven't paged me yet so I am assuming things are going
well... last time (the failed shunt attempt) they paged almost
immediately after they took him back so I am going with the no news
is good news theory.
*** Update
Colton's surgery went very well, no complications. So, Colton finally has his shunt!!! A lot of the nurses came in as he was recovering and said "FINALLY". Nurse Heather was there to take wonderful care of Colton. While we were there he woke up quite a bit, moving around his arms and head, He is still on the vent and probably will be at least until tomorrow... but they have already started feeding him, he is handling that well. The physical therapist came in to evaluate Colton last week and got to discuss the results with us this morning. For the most part she let us know that she is mainly concerned about his sight and hearing... she said he is hearing and seeing, she is just isn't sure he is doing so well. There are also a few issues with his muscle stiffness, meaning he will have a harder time doing some things compared to another child. There is a program that we automatically qualify for due to Colton's grade 4 IVH (brain bleed) so we will start that shortly after he gets home. It will help him in all aspects of his development. It continues up until age 3. We are going to make sure we do whatever we can to give Colton the best chances possible to excel development wise. I beg everyone to remember that this is an initial visit and the findings are very rough. Also remember that no matter what difficulties he faces Colton is still a wonderful perfect miracle boy. I am sure most of you already know this but I often get questions like "What if this or this is wrong with him, what are you going to do?" God has a reason for everything! Thank you all for the prayers today... they mean the world to us!

April 23, 2008
I just got off the phone with Heather and Colton is off the vent as of this morning. He has had a few spells since then, if they get worse he might have to go back on for a little while but as of right now he is off. He is also tolerating his feedings just fine but they are not yet giving them to him by bottle because he was on the vent for that time. The next step is for the eye doctor to come in and decide if he needs surgery on his other eye or not. Hopefully he will come in tomorrow but if not Heather promised me she would track him down for sure by Friday.

April 25, 2008
Today Colton is FIVE months old... he is getting so big. He weighs 7 pounds 11 ounces!!! The eye doctor finally came in to check on his eyes this morning and decided that he does need surgery on the left eye. They are shooting for next Tuesday to get this done. So far there have been no problems recovering from his operation to place the shunt (knock on wood).

April 28, 2008
Tomorrow Colton will have his second vitrectomy (eye surgery) to try and repair the effects of his Stage 4 ROP in the left eye. They do not usually give me a time for surgery until late the night before or the morning of... I will be sure to post the time as soon as I find out. I have also been given a little bit of bad news concerning the other eye. It turns out that he will have to have another surgery on that eye next week. They cannot do them at the same time because it would be too much strain on Colton's tiny body. His right eye was progressing for sometime but now has detached again. This is not a good sign for his vision but the Doctors are doing all they can to correct the problems. I know that my optimism has been questioned lately but I would like to say that I do have a very optimistic view of this whole situation and that is this... Colton has been a very sick little boy for a very long time, there are a lot of odds working against him as far as him developing like a "full-term" baby. I have been told that preliminary studies of his vision/hearing cause some reason for concern and his muscle tone is going to make it hard for him to function as easily as other children. That is the realistic side of the situation. Now comes the optimistic part. My optimism lies in the fact that no matter what problems we face, WE CAN GET THROUGH IT! We will make it work no matter the difficulties and challenges. I know that I will do all I can to give Colton the most rewarding life possible. My optimism lies in the fact that Colton will be loved by so many people who will do all they can to help us and pray for us just like you all have. My optimism lies in God and the fact that he has a reason for everything, the fact that I can turn all my worries over to him and throw up my hands and he will take care of us, all of us. So, I ask that you continue to pray for Colton but don't emphasize the desire for Colton to have a perfectly "normal" life... what is "normal" anyway? Pray that God's will be done... because our optimism should lie in the fact that no matter what it will be done and that is a great thing.

April 29, 2008
Colton is out of surgery and everything went fine. He is already waking up and they are trying to lower his rates on the vent to get him off soon. I had a talk with Dr. Blackburn just now and he said the left eye (they one they worked on today) was in pretty bad shape, they had to remove the lens which means he will have to wear a contact to protect that eye. Even after the surgery today the Doctor feels like Colton's right eye is going to be his good eye (we won't know how good until next week). He did say that Colton will be able to see "something" out of the left eye but he will not be able to read with that eye. I am not quite sure what that means as far as overall vision but next week we will know more. He did give me some good news... He anticipates that after the surgery next week he will be finished with his eyes (surgeries) for at least 4-6 weeks, possibly for good. So, Dr. Blackburn predicts that Colton will be able to go home after this next vitrectomy. I am now going to knock on something made of thick wood!

Next: Plans

Why I march...

This story about Colton and March of Dimes was in the Thursday State Journal.

While most mothers bring their babies home shortly after birth, Crystal Darnell waited an excruciating 172 days before her son, Colton, could leave the hospital. And worse, on the day of Colton's birth, doctors gave him a 10 percent chance of living. Born four months early, Colton's miniature body was seriously underdeveloped, and a bleeding in his brain would permanently take away his eyesight.

"He looked like a snickers bar with arms and legs," said Darnell. Seventeen months after Colton's surprise birth, Darnell, 23, sometimes wonders what it must have felt like for him to spend his first six months in pain, often on the verge of death. "He amazes me," she said on a recent afternoon during Colton's physical therapy. "He's such a fighter. He had to fight to make it, but that doesn't get him down. He's so happy to be here."

Colton, who has grown from one pound and four ounces to 17 pounds, giggles and feels his toys with his mouth. Whenever he hears his mom's voice, he moves his head in her direction. He loves the sound of her voice - that voice that prayed over him and whispered to him from the other side of his incubator. "Colton, I love you, and I need you to hold on," she told him on day 10. "I know it's hard, but God is with you, and he can help us all through the tough times."

It's Darnell's harrowing experience that involves her in the March of Dimes. Research, largely funded through the March of Dimes, is crucial to keeping preemies like Colton alive, she says. "Forty years ago, there wouldn't have been much of a chance for him," she said. The March of Dimes is the leading fundraiser for research into the causes of premature births. The national walking event has raised $1.8 billion since 1970, according to its Web site.

Another goal is to raise awareness that premature birth is the leading cause of newborn born death and many lifelong disabilities. While rates have improved drastically over the last half-century, one in eight babies is born prematurely, according March of Dimes statistics. Walks are held nationwide to remind teams to raise money.

The Frankfort March for Babies will be Friday (for state employees) at the Capitol and Saturday at Lakeview Park (for community members). "State employees have been really generous to us," said Megan Jones with the March of Dimes. "We decided to have an extra walk for them since so many come from cities around the state." Last year, the walk raised $102,000 - much from state employees, Jones said. She expects more than 300 to participate in both walks. "Anyone is welcome to come to either walk," she said.

Colton's team is made up of his parents, grandparents and their friends. They are walking Saturday and hope to raise $500. "These are very serious, life-threatening issues," Darnell said. "If it wasn't for the hospital - and God - I wouldn't have Colton." Doctors determined that an E. coli infection caused Darnell to go into labor prematurely. She was rushed to the University of Kentucky Medical Center, where she gave birth to Colton, who was a meager 12-inches long. A team of specialists kept him alive at UK's Neo-natal Intensive Care Unit.

Over several months, Colton received countless surgeries and blood transfusions. There were days doctors thought he wouldn't make it, Darnell said. She and her husband, Seth, watched him through his incubator and asked God to spare his life. Because she could not hold her baby, Darnell wrote to him in her journal. Nine days after his birth, as she sat watching his monitors, she wrote, "Right this second your numbers are jumping up and down - I'm trying not to look. It drives me crazy when you do that. You're still doing it. I want to pull my hair out Stop, please. This is so hard, but I know it's even harder on you. I'm so sorry, I wish I could make it all go away for you we just both have to be strong."

Colton did what his mother asked, and was finally well enough to go home on Powhatan Trail on May 14, 2008 " a day filled with "emotion and lots of tears." "When we left the NICU, all the nurses gathered around and took pictures with us. Then everyone clapped as we left it was like a scene from a movie," Darnell said.

Today, Colton is learning how to crawl and stand and speak. He has learning delays because of his blindness, but physical therapists are helping him work around it.He adores his dad and can endlessly prattle "da, da, da." He loves music, eating and exploring anything with his mouth.Saturday, Colton will complete the walk in his stroller as he takes in the beautiful sounds of life."He loves being outside," Darnell said. "He can't see, so he raises his hands in the air and feels the wind. He likes the way the wind feels in between his fingers."

The SJ did a wonderful job with the article. However, Colton's blindness is not caused by his IVH or "brain bleed" as she put it. Retinopathy of Prematurity (ROP), a disease that is very common in preemies, was responsible for his vision loss.

As stated in the article TEAM COLTON participated in our local March for Babies for March of Dimes this weekend. We raised a little over $500.00, we reached our goal! I am so thankful to everyone who donated and/or walked with us.