Great Strides - Fight with us!

Hi Friends,

This is Rebecca again - stealing back DJ's blog to send out an update since he doesn't get around to updating it very often. I know several of you have shared with us that you use this blog to keep up to date with what is happening in our life and with Colin.

I wanted to take a moment and write to you, because we need your help! We are participating in an amazing campaign for the Cystic Fibrosis Foundation called Great Strides. Great Strides is a 5K walk to raise funding for CF research. The vital research is what creates the drugs and therapies that allow Colin and other kids with CF to live longer more fulfilled (HEALTHY!) lives. CF does not receive federal funding, so it is crucial that people like you and me help make this research possible.

Would you consider donating to our team - the Fighting Fish? We understand that with the current economy and job loss all around, it may be very difficult to spare even a small amount, but you can be sure it is going to a good cause... helping Colin! Please think about what you can give - $25, $10... even $5 will make a difference!

Go to www.cff.org/Great_Strides/RebeccaFish to make a donation to our team online, or you can mail a check directly to us. We appreciate you taking a part in this years Great Strides.

Together, with your help, we can make a difference.

happy new year...2009

Many of you have been begging, pleading, for the next blog post. Well, here it is...

Welcome 2009. Our personal lives, as many of you know, have looked very similar to the life of the world's economies this year. And yet, despite all of that, we feel pretty darn good most days. Of course, the two hospital stays have not been the highlights of our year, and Colin's diagnosis was a huge wallop in the arse, but all in all, Rebecca and myself feel confident not in rosy days ahead, but in a practical sense of peace of mind about our lives and Colin's. As we look to the future, we don't see 2009, we see many years of incredible times with our son.

You see, 2009 is a finite idea. It has a beginning and an end. We know that Colin's life, just like all of our lives, is finite as well, but we cannot dwell on that aspect. If we focus too hard on when the end of Colin's life MIGHT be, in any of his possible limitations, we won't be able to revel in all that is between now and then, in all that COULD be. Call it a New Year's resolution if you will, but I will call it my LIFE's resolution -- not just with Colin but with every aspect of my life -- to look forward to tomorrow with open eyes and see it not as another day with a beginning and an end, but as an incredible opportunity for excitement and adventure.

We are thankful...

It has been a full week since I watched the nurses take out Colin's pick line, packed up our bags, said good bye and headed home from the hospital. I am not too surprised that it has taken me this long to find the time to write about the end of our stay and update you all on Colin's status.

We have spent the last week settling back into our home routine, catching up with stuff at home and work, and continuing to care for Colin as he needs us to. I am proud to announce that Colin is doing amazingly well. The doctor told us that he would be a different kid afterwards, and we didn't really know what that meant. We figured, Colin is a pretty happy, content kid anyway... so how much better could he become? We expected him to improve medically, but we didn't expect anything more. But it's true. He has grown up so much over the last few weeks. It really is as if he has more strength and energy to play and interact with his surroundings. Oh... and he is getting LOUD!

One doctor suggested that because we removed so much mucus from his lungs, that
now his nutrients can go to his growth instead of going to "fight" the infection and mucus buildup. Colin now weights 18lb 12oz and is 29" long! That is 25th percentile for his weight and 75th percentile for height! Before he was diagnosed with CF, he was in the less than 3rd percentile for his weight. What a drastic improvement!!!


On a different note, I want to say that we are so thankful for each of you. If you are taking the time to read this blog and stay updated on our lives, we love you. If you ever say a prayer for Colin, we appreciate you. If you have helped us out in any way... from bringing us dinner to calling to say hello... we are so grateful to have you in our lives.

One of the things Colin has taught me is that life is truly precious. We don't know how long we have or what the next day is going to bring us. So it is important to make the most of every moment we have. To cherish the time we get to spend with family and friends. I will continue to do the things I need to do to help Colin live a fulfilling life, and I hope and pray every single day that he grows up to be an amazing man and lives a long and wonderful life. While it's not always fun or easy to give him the care that he needs, I know that there is nothing more important that enjoying every moment I have with my beautiful baby boy, and doing everything I can to help him thrive.

I wish all of you a wonderful Thanksgiving! I hope you are spending it with people you love.

Oh, and I am going to give DJ back the reigns to this blog. It has been a pleasure writing for you.

-Rebecca

The Technical Stuff.

OK so I just reread the last few posts and realized some of you may be looking for an actual update on Colin's medical status, and not just another reminder that he is adorable.

On Wednesday morning we had another chest x-ray. The doctor said he looks much more clear. There are still a couple patches of mucus in his lungs, but if we focus the chest PT in those areas and continue with these meds, we should be able to knock it out. He seems to be responding to the meds perfectly. 

His breathing has drastically improved. Except for a couple nights when the respiratory therapists were running late, I have not heard a wheeze or rattle in his chest at all.... the silence is incredibly strange. Colin has been a hard breather since birth... so it's awesome to hear such an immediate difference.

The 2nd weekend.

Still Rebecca here. We're over half way there! I think both Colin and I are a little tired of the hospital. At least I can get out now and then... he is stuck! 

In the last few days we have had nurses "fighting" to be Colin's nurse... one nurse say "I've heard about colin but hadn't seen him yet"... more people talk about how cute he is and how happy he always seems... and one tell us that he is without a doubt the most popular kid on the floor. How did we get such an awesome little boy as a son? I am totally amazed with how incredible he is.  Seriously... colin has been at the hospital for 10 days now, and STILL have such a happy disposition... you'd never know there was anything wrong with him. 

Last night DJ had his first overnighter at the LCH. And tonight is my first night away from Colin since the first day he was born and in the NICU. For almost nine months, I have not gone a single night without him in the other room or right by my side (and technically 18 months if you count being pregnant).  It was hard to leave the hospital tonight, but I know it is good for me (I am going to sleep in a real bed!... and I am trusting Colin's daddy to be in charge!). I pray it is a good night for both of my boys. 

I just want to say a quick thank you to everyone who has prayed for us, called, and visited us during this time. We feel extremely blessed to have such amazing friends and family.

So Much For Schedules

Today was an interesting day for Colin. Every time he fell asleep for a nap, someone would come into the room (often loudly) and wake him up. So each time I would lay him down, he was so restless- fighting sleep. Even now, he is down for the night but I keep hearing him stir. And any moment the nurse is going to come in to hook up his IV, and I am sure he will wake up again. Poor little guy. The doctor understood that it's not easy maintaining our normal schedule in the hospital, but he's trying to help! They weigh him every day... and I just found out they were doing it at 4:00 in the morning. I thought it was ridiculous, but they said that's just what they do for kids under 1yr old. Thankfully, our doctor told them NOT to do it until after 7:00am! Maybe Colin will actually sleep all night tonight. We'll see...

He's still doing fine. His breathing is pretty good, his appetite is big, and he's growing every day. Colin did have something exciting happen today. He is starting to babble more, and today he has discovered the "da" sound. It's adorable. He now speaks continuously "dadadadada". One day he'll know what he's saying, but for now, DJ is still pretty excited to hear Colin call for him!

I finally left the hospital today. I didn't really feel like I wanted to or needed to, but everyone wanted me to get out for a bit... so I left. I am sure it's good for me, but I think having a nice view of the world from our room helps me not feel cramped. I get to see the outside world every day through our window. And many friends and family have come to visit. All those things are helping to make our stay here much more pleasant. Nonetheless, I will continue to leave the hospital a few hours as I am able because I know it's suppose to be the healthy thing to do. But all I really care about is being here with my little boy.

Tomorrow we have a chest x-ray in the morning. I think the doctor expects it to look clearer than last week. I'll update once we know a little more! Hopefully Tuesday will be a better day for baby Colin!

A New Week

Monday's over. I didn't even write on Sunday. Not because I didn't have a chance to, but nothing new really happened. We're  just here. Each day is pretty much the same. The nurses come in. They hook Colin up to the IV pump, give him meds, do some breathing treatments, he eats, he sleeps... and then in a few hours we do it again. It's really not so bad. Colin plays, I try to get some work done, and we make it through the day... putting us one day closer to going home again. 

The doctor still thinks he is going great. We will be getting another chest X-ray on Wednesday and some lab work on Thursday. They will just keep monitoring his progress and enjoying getting to see him every day. One of the nurses Colin had a couple days ago passed me in the hall and asked me how her boyfriend was doing. Today some of the nursing students from UNCC and CPCC were here, so Colin flirted and they played with him a little. The students ask some good questions about CF, and I am glad to be able to share our story with them. They seem interested in how it is diagnosed and what to look for and stuff like that. I think it's great they are learning about CF, even if it's through us.

I don't know if there will be anything noteworthy in the next couple days, but I'll be sure to at least post to say we're still here and doing fine. Until then, goodbye from the LCH!