Sunday, November 25, 2007

Update and Volunteer Meeting

Happy late Thanksgiving, y'all! We had a very nice (but cold!) Thanksgiving with so much to be grateful for this year. Each of you, your thoughts, prayers, and well wishes were especially at the top of our thanksgiving list! We would not be able to celebrate each day with our precious son without you. Keegan will unfortunately have to wait for his first turkey until next year! He is doing well and up to 8.9 pounds. No rejection, infection, or general yuckiness yet. Please pray that he continues to grow, eat, and stay healthy through this cold/flu season, as even the tiniest infection could threaten his life at this point.

I am trying to keep posts to a minimum since there is so much to transfer to the COTA website. If you've looked at it lately, you may have noticed that Mark (Gray's dad & Keegan's "Pops") has already started the painstaking process of transferring all 90+ blog entries into the "journal" section. I can't start blog entries on the COTA website until all the old ones are transferred, or they will be out of order. We are also still learning how to make the website a little more "user-friendly" and get some pictures on the site.

VOLUNTEER MEETING THIS WEDNESDAY - Please see the "activities" tab of the COTA website for more info!! This is for people interested in organizing fundraisers or heading committees for various fundraisers. It is a training session by COTA for this purpose. You do not need to attend if you want to volunteer at fundraisers or make donations. Please see the website for more info.

Thursday, November 15, 2007

Update - Please Read!

Sorry it's been so long since we updated. Now that we've gone to only once a week clinic visits, there isn't quite as much to report. Keegan did weigh in at 8 1/2 pounds yesterday!! That's a full pound in 2 weeks - he's getting to be a little chunky monkey. He is still taking about 80 to 90 mls (around 3 oz) in each bottle. The doctor said that we can consider getting rid of the middle of the night feed once he gets to around 4 oz consistently or is a little closer to the normal weight range for his age. So, for now, we have to wake him up to feed him at night. We are praying that he gets to that 4 oz mark pretty soon because he sure seems to want to sleep at night! I can't say I blame him - I want to sleep too!

All his tests looked just fine yesterday. The clot is still there, but it hasn't changed or migrated. Keegan will probably stay on the blood thinner for another month, and then, we'll reevaluate if it still appears the same. We found out that Wednesday is transplant clinic day, so we were able to meet several other transplant families. There were some kids who were relatively recent transplants and one was already 11 years post-transplant. Some have had problems, but most of the kids were very encouraging. It will be nice to get to know them and see what we have in store.

This will probably be one of the last posts we do on this website. We are painstakingly moving each blog entry, comment, and hopefully guestbook note to the COTA website. As y'all know, we are technically not supposed to be updating this one anymore, but COTA is being very understanding as we go through this process. Each one of your encouraging words and prayers is important, and we don't want to lose a single one! The COTA website will have the capability of sending emails to y'all when there is a new blog entry, picture, volunteer opportunity, or fundraising activity posted. We have to manually create the contact list however. SO, if you want to be on the update notification list for the COTA website, PLEASE EMAIL KEEGAN at keeganharrison@yahoo.com. Just send an email to him from the email address where you would like to receive updates. If you would like to write a message to Keegan, we will be making a scrapbook for him of all of them (at some point!).

Thanks so much for keeping up with Keegan and praying for him. He may not be able to say it yet himself, but he surely knows how much he is loved and cared for by each of you.

Friday, November 9, 2007

Hitting His Stride

Keegan weighed in at 8lbs 3 oz yesterday at the hospital! The dietician said he's "making a beeline" for the normal weight/height curve. They also approved a feed on demand schedule, which is more appropriate for his age. Since he has to take meds five times a day at specific times, it's easier to do that with a feed. So now, he'll be taking 6 bottles a day with 3 oz or more in each, rather than 8 bottles a day. Most importantly for us, that means we get to sleep a little longer at night! Yeah! He'll probably give up one night feed pretty soon since he sleeps so well at night. We've also been approved to do "tummy time" now. Keegan had to wait 5-6 weeks after closing his chest to make sure his sternum was healed. He actually doesn't mind it too much and is turning his head and lifting up several times each session. He can even squirm his way across the mat if he feels like it.

The best news is that we only go to the hospital once a week now! He will get an echo again next Wednesday, so we'll see what they say about the clot. Other than that, we're just living our "normal baby" routine, even if we are kinda quarantined. We are so thankful to God for the opportunity to be somewhat normal! Please keep praying for Keegan's continued progress and growth. Your prayers mean so much to us. We are so grateful for each one of you

Monday, November 5, 2007

Update

Keegan weighed in at 7lbs 10oz at clinic today. Dr. Fixler said to stop regulating his formula and just let him eat. Easy to say when you don't have to clean up the spit-ups, but we'll try it. They left him off the meds they reduced last week, which was good. The echo from last week didn't show the clot, so we're not sure if it just didn't get a good view or if it's gone. It would be a little concerning if it was completely gone because that would mean it may have "migrated" somewhere else. He'll have another echo in a few weeks, and we'll see what happens then.

We visited the ICU - social visits only! It was nice to see some of his nurses, and they all seemed so happy to see him out and about. No one can believe how great he looks. I'm sure Keegan was a little confused to see a mouth and nose on most of them since he was used to everyone wearing a mask! That's all for today. Hope everyone had a good start to their week!

Sunday, November 4, 2007

Weekend Update

This was a pretty good weekend for our Bug. His godfather, Teague, came in from New York so he could meet Keegan and be there for his baptismal rites. Father Postell baptized Keegan at Children's the day he was born, but Friday night, Father went through the rites so that Keegan would have a formal christening. It was nice to do one more "normal baby" thing. He also got a visit from the Eisenbeck family today as they passed through on their way back to Nashville. Keegan whispered to us that he'd like to go to Nashville too, just like his parents. ;)

The weather here was beautiful this weekend, so we took as many walks as we could to enjoy it. Keegan really seems to like being outside, and we can't help but think that the fresh air is good for him. He has been taking a little over 2 ounces on most of his feeds this weekend, so we're hoping he will be close to 8 pounds tomorrow at clinic. His little arms and legs are starting to fill out, and he finally has outgrown the preemie diapers. The last one received quite the unceremonious farewell from Keegan, if you know what I mean!

We have posted a link to the new COTA website while we work on transferring to it. Obviously, there is a lot of content to move, and it's not set up quite as nicely as this one. Most of what is posted at the moment are "test" posts. The good thing is that the account is set up, so donations can be made now.

Last week of two clinic visits a week! More later!

Friday, November 2, 2007

Update

Clinic yesterday was very long and tiring, but everything was okay. Keegan weighed in at 7lbs 8 oz and almost 20 inches long. His EKG and chest x-ray were good. We didn't get an official report on the echo, but it sounded like there was no change from two weeks ago. His white blood cell count was pretty low, so they backed off a few of his medications. What the doctors think may be happening is that his immune system is adapting to the suppressed state and staying that way. Since his immune system is so immature, it may be recognizing the suppression as "normal" whereas an adult's system would require constant medical suppression. That means he may not need as many meds to suppress his system and eventually may not need as much suppression to ward off rejection. His body may not be as apt to recognize the new heart as foreign. This is all speculation of course. We'll just have to wait and see.

In other news, we are trying to transition this site over to the new COTA site, so bear with us as we figure it out.

Please continue to pray that Keegan will eat and grow to become stronger every day. We are praying that he will continue to not need as much medications and that the doctors are able to find a happy medium with the meds so that he doesn't go into rejection but is not so suppressed that he is constantly battling infection. Thank you for your continued showing of love, support, and prayer.