How we found out...

In June of this year I had to go to the doctor for some annual blood work due to a medication that I am on. Seth and Colton went with me, we thought it would be a quick and uneventful visit. They waited in the waiting room while I walked back with the nurse. She took my blood pressure and temperature. Then, finally took some blood and requested a urine sample. About five minutes later the Doc came in and said these exact words. "Welp, you're pregnant". ...WHAT!?!?!?!?... After the miscarriage, Seth and I had decided to wait until after I graduated to have another little blessing. He was in the process of starting a new job and after a quick calculation I realized this baby would be due right in the middle of student teaching. The doc finished up while I sat there dumbfounded. I was so worried, worried about the timing, worried this pregnancy would end up in another miscarriage, worried what Seth was going to think. The nurse came in to give me some paperwork and a little plastic bag containing a white stick with two clearly pink lines. I opened the door to the waiting room, saw my adorable son and husband playing, I stood there for a moment, then the tears came streaming down my face. Seth saw me crying and asked me what was wrong. My only possible response was to hand him the plastic bag. So I did. Seconds later, through the sobs, I managed to blurt out a wimpy "I'm pregnant". I waited patiently for his response. The words I heard next took a huge weight off my shoulder, Seth always has a way of making me realize that everything is going to be okay. He smiled "Well, what are you crying for?" and gave me a big bear hug.

On the ride home we went into planning mode. By my timeline I was about 5 weeks along, we decided not to tell anyone until closer to 10. With my high risk status I had been told to call the baby doc as soon as I found out about any pregnancy. I did so and got an appointment for later that week. We discussed possibilities and explained to Colton that he was going to have a little sibling. By the time we reached the driveway I was feeling tons better, everything was going to be okay, we knew it.

Trip #4

Tomorrow morning we leave for another trip to Michigan. This will be our fourth trip in just three months, we are TIRED but certainly ready for some insight from Dr. Trese. He will put Colton to sleep in the Beaumont Children's Surgery Center and examine his eyes, we will know a little bit more about how his eyes are healing after the surgeries in January. There is a very slim possibility that Colton will need more surgery but hopefully we will get out of Detroit without that happening. As always, prayers are welcome and appreciated greatly. I'm a bit bummed because Colton has just gotten back to his old smiley self just in time for the Docs to bother his eyes again and make him mad. I already know he will keep his head down and eyes closed for the next two-three weeks, I miss that smile when he is sad.

In other news... How about them WILDCATS? I could not be more pleased with the way UK is playing this season. We are dedicated big blue fans even during the crappy years but boy is it fun to win.

Spring is here and the weather is very nice. Colton's new favorite thing... falling asleep in the swing at a local playground, he loves being outside.

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.

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.

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.

Daddy's Girl

I have always been and always will be a daddy's girl. My dad has always been so strong, loving and supportive. With all my heart I believe he is one of the greatest men on earth. Because my dad is so strong, when he is hurting or sad I feel horrible myself. Right now he is hurting. Last week he had a procedure done at our local hospital and now the trauma of that procedure has caused him to develop a staph infection and cellulitis. He is diabetic so he is prone to infection but this infection has landed him in the hospital. His blood pressure and blood sugar are through the roof so he is really suffering. This daddy's girl is asking you to please pray for her daddy, it is so hard to seem him in pain.

***I am updating twitter frequently. Follow me here.

You Guys Rock My Socks!

I am so lucky!

So lucky to have amazing people in my life (IRL & OL) that care enough about a little boy (my Colt) to send waves of prayers in his name up to our Lord during this difficult time. Thank you for your prayers, thoughts, well-wishes, donations, support and encouragement. Thank you! Thank you! Thank you!

So lucky that several people care enough to send in donations to help us get to Detroit and back for surgeries that we hope will improve Colton's vision. It is so nice to know that there are still people out there who will lend a helping hand to someone that they barely even know. My heart is full of joy and thankfulness.

So lucky that today prayers were answered. Colton's test results showed no significant brain damage, he is developmentally behind, we knew that, but nothing on his 'top floor' is working against him so everything will be just fine, it will just take time (and more prayers).

So lucky that a person can live with just one kidney. The kidney scan showed that one of his kidneys is completely not functioning, it's basically sitting there like a shriveled up raisin. The other is working overtime to pick up the slack but it is functioning at 100%. Take that, you kidney smidney, we only need one of you anyways, so ha!

So lucky that I get to be the mother of such a tough little boy. He really is the greatest thing that has ever happened to me.I am so lucky!

With a little help from my friends.

***UPDATE*** Since posting, I have had some people ask if it is possible to send a donation through snail mail. Our answer: why of course it is possible! Just shoot me an email at CGDarnell67@hotmail.com and I will reply with our address. And, once again THANK YOU!!!!

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ORIGINAL POST:

Before Colton's latest trip to Detroit, several people asked if we needed help with the related costs. I knew that, with the help of our immediate family, we could handle the cost of that short trip so the only help we requested was prayer.

After meeting with Dr. Trese earlier this week, it was determined that Colton's vision would greatly benefit from surgery in both eyes. For this to happen we are going to need to return to Detroit/Royal Oak, Michigan from January 25 through February 1. I cannot even pretend that we are capable of affording gas to & from and a hotel room during that time on our own. So, that's where anyone who wishes to help comes in. I have placed a 'donate' button from paypal on the upper right hand side of my blog for anyone who wishes to make a donation. Any little bit will help and I guarantee that it is greatly appreciated.

If for some reason we did receive more than required for Colton's medical travel expenses, I will donate it to March of Dimes and Friends of Maddie, both organizations that benefit babies and families in the NICU.

On a side note, tomorrow we have to spend the day at UK Hospital. One of Colton's kidneys has quit working so they are going to run a scan to see exactly what the problem is. They are also going to do an MRI of his brain so we can get some more info on what (if any) brain damage he has going on from his brain bleeds and brain surgery early on. He has to be put to sleep for these test, that always makes me a little nervous... our little rascal has been known to crash under sedation, they know this though and always make sure they are prepared for the worst.

I am so thankful for all of you and of course we are still in need of each and every prayer sent our way. Thank you and God Bless.

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.

The Graduate

When you have a child in the NICU at UK Hospital, the experience doesn't quite end the last day of their NICU stay. For the first year you have to visit the NICU Graduate Clinic every couple months, then you have an appointment at 1 year and a final visit at two years of age. Colton had his final visit just last week.

The first time we walked into the graduate clinic, about a month after Colton left the hospital, I still had sooo many questions about his future. I remember sitting in the waiting room, eyes glued to the play area, wondering if my son would ever be well enough to play with those toys. Imagine my joy when I sat in almost the same exact spot last Wednesday staring at this...

and YES in that last picture he IS doing the baby sign for 'horse'. (I know, I know, my kid is a genius.) I just sat back with Seth, smiles plastered across both our faces, watching the miracle that is our little boy. Just when I think he can't possibly amaze me anymore, he goes and proves me wrong.

After a check up with several doctors, therapists and specialists, Colton graduated (to quote one of his former NICU nurses) "with honors". His weight held steady at 22.5 pounds. They are still slightly concerned about his length but not concerned enough to start him on growth hormones just yet.


We left the clinic with diploma in hand (it is now proudly posted on our refrigerator) and spent the rest of the morning at toys-r-us to celebrate. It was a marvelous day.

It's December Already...?

Where have I been??? I started working again for the first time in Colton's life. I am substitute teaching for our local school system again. I really do love teaching and if I can ever finish college, I plan on doing it full time.

Colton had a great birthday party the Saturday before his actual birthday.We crammed 45 wonderful friends and family members into our 12oo square foot home. It was a BLAST!

He turned 2 on the 25th of November, we've been visiting all of his many Doctor's ever since for check ups. Even with all the appointments, the two-year-old version of Colton is just as happy and cute as ever.

See...