Saturday, January 30, 2010

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.

Friday, January 29, 2010

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.

Wednesday, January 27, 2010

Wordless Wednesday - Better Late Than Never

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

Tuesday, January 26, 2010

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.

Monday, January 25, 2010

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.

Sunday, January 24, 2010

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.

Saturday, January 23, 2010

This is a test

Testing, 123... Is this thing on? I have had a wonderful birthday today. Thank you to everyone for making it so special. My amazing parents got me this wonderful iPhone that I am attempting to type my first mobile post on. Is it working? I hope so. I should be packing considering we leave for Detroit in the morning. But of course I am downloading apps instead. My dad is still in the hospital but he is doing much better, he's still on meds to get rid of the infection. I suppose I should at least attempt to be productive, so I guess that is all for now.

- Posted using BlogPress from my iPhone

24 Years Ago Today...

... I was born.I don't actually remember but I've been told it was a pretty good day. Thank you Mom and Dad for bringing me into this wonderful life!

Friday, January 22, 2010

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.

Thursday, January 21, 2010

Thoughts

Just some random thoughts... I'm not in the mood to compose a post that takes much effort. Sorry. Just being honest. I'm exhausted. I had a sore throat for about a week, luckily it went away on its own and I didn't have to go to the doc (I don't have insurance). I worked this morning teaching music at an elementary school, it was fun but I'm so tired. My birthday is this weekend, I'm turning 24 but I can't convince myself to get excited (I'm normally all giddy about my birthday). I think the stress of everything that could happen next week is kicking in. I feel like I'm allowing myself to hope too much. I want to be optimistic but I don't want to be so hopeful that I am devastated if nothing can be done to improve Colton's vision at least a little. I'm torn. No matter what, I have to remember that one of the benefits of having a relationship with God is that he is always right by your side and he has a plan for everything.

***When you have nowhere else to turn... look up.***

Sunday, January 17, 2010

A is for Alphabet

Even with the surgeries coming up in Detroit, Colton's primary means of writing and reading will be braille. I have been taking braille courses online through Hadley School for the Blind since last year and have learned grade 1 (uncontracted) braille. I wanted to learn the braille alphabet early so that I could introduce it to Colton as soon as possible. Well, that time has come, this week we will begin a "Letter of the Week" unit in braille. Some believe it is too early (I strongly disagree) while others are very interested in getting involved in Colton's braille education. Many of our family members, friends, co-workers and blog readers have mentioned to me that they would love to learn braille, well guys, now is your chance. I will be sharing our alphabet journey with you, every Sunday, starting today! Whatever your reason may be, I hope you will take this opportunity to explore braille with Colton and I.

*In addition to the letter I will be sharing activities that you can do with your child, some may be a bit premature for Colton but I still would like to share them with you.

Here we go...

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A

Before we begin it is important to share a little information about the braille system. Every braille character is formed within a cell, each braille cell is made up of six dots. Like this.The dots are numbered 1-6 for reference purposes. 1 through 3 on the first column, 4 through 6 on the second. In uncontracted braille, each word is spelled out letter for letter. This is what we will be learning, the alphabet in uncontracted braille. Contracted braille or grade 2 braille is similar to shorthand, one day I will be sure to do a series of blog posts on contracted braille but I will not go into any more detail on that considering I have not even begun that course at Hadley yet.

The letter a is formed using just one dot, located in dot 1 of the braille cell. It looks like thisThe shaded dot is a. The unshaded dots are just there as you are learning, so you can see where the dots are in relation to the full braille cell. For a person learning each letter with a visual impairment the shaded dot would be textured so they could feel it. It is perfectly okay for anyone with vision to learn braille through sight, it is the primary way we are accustomed to learning.

How many of you have those magnetic letters that stick on your fridge, we do but ours might be a little different than yours. Playskool makes magnetic letters and numbers with braille on them, these are great for sighted or VI children. The can introduce your child to braille and provide hours of fun.

Another great way to introduce your child to braille is through literature. The Secret Code is a book about two children, one who is blind, who discover that braille is a lot of fun.If you would like to order books that contain both print and braille, Seedlings is a great place to start. They have a lot of very popular books. For a, our letter of the week a great book to start with is Alex Alligator and His Fearsome Jaws.Be sure to practice your letter a, if you happen to see a sign in braille, take a closer look and see if you can find our letter of the week. Join us next week for the letter b.

Tuesday, January 12, 2010

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!

Monday, January 11, 2010

Snow is white and wet and cold.

The fact that Colton cannot see doesn't stop him from knowing what things look like, just like sighted children, he learns about things as he experiences them. The only difference is Mommy & Daddy (or whoever else is there) have to be his eyes for him. When you add what we tell him with what he can feel, smell, taste and hear, I think he gets a pretty good idea about all the amazing things God created on our planet.

We had about three inches of snow here in Kentucky this weekend. Last year we had snow but Colton was still to sick and little to go out and play in it. This year he got to experience the white, cold, wet, FUN stuff.He didn't care so much for playing in the snow but he LOVED sledding on top of it, with Daddy, Nana, Pops and cousin Miranda.He loved sledding so much than when it was time to come inwell, lets just say he was none too happy about it.

Saturday, January 9, 2010

Monsters

Last August I wrote this post about my less than perfect mental health. I am very happy to say that my OCD & Panic Disorder are both under much better control than they were when I wrote that post.

I can leave the house without completely freaking out now, I even started working again as a substitute teacher. I didn't get to go back to school last fall like I wanted, due to money issues, but will hopefully return sometime in 2010. I feel more "normal" than I have felt in years. I'm still scared of everything that I wrote about when confessing my secret to the world but with consistent medication, talking it out with others and lots and lots of prayer, I am slowly getting better and stronger.

I have my son to thank for a lot of my progress. Whenever I start feeling scared or anxious, I just look down at him and remember all he has been through. He has fought so hard to overcome every single obstacle that he has been faced with, surely I can beat a few chemical imbalances in my not-so-stable brain. He wakes up with a big smile on his face every day when he could be timid and scared. He wakes up ready to live each day to the fullest.It is usually the parent who helps the child realize that the big scary monster isn't really all that bad after all... obviously in our case it's the other way around.

Friday, January 8, 2010

Pamela

Pammy was an amazing person with an even more amazing heart. She was full of love and life.She was dedicated to serving the Lordas well as teaching and caring for children.She combined her love for the two in Poland, her favorite place on earth.Her family and friends meant the world to her.especially the close group of girls she grew up with.Daisies were her favorite. And, much like each Daisy adds a little drop of sunshine to the ground, she brought sunlight to each and every life she touched.

On August 6, 2007, after 20 years on Earth, she went to spend an eternity with her Savior and Heavenly Father. She is greatly missed but we all know that she is right where she always wanted to be.

Happy Birthday Pam!!!In Memory of
Pamela Catherine McCardwell
January 8, 1987 ~ August 6, 2007

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10


Wednesday, January 6, 2010

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.


Tuesday, January 5, 2010

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.

Sunday, January 3, 2010

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.