Thursday, January 7, 2010

Update

Every night, I think "I really should post an update on Keegan's journal", and then I think I just don't have the energy to hash everything out again. Don't get me wrong here, it's not that I don't want to journal for all the reasons I've mentioned before. Still, sometimes it can be just a bit overwhelming to put it all out there in writing...again. Which of course means longer posts when I do write. Besides the fact that each post requires writing here, posting pictures on another site, switching email accounts, sending an update email, going back to my email to make sure it sent, sending a twitter update, yadda yadda yadda. BUT soon all that technical tediousness should be a thing of the past! We will be switching to a new blog hopefully within the next two weeks. We've got it mostly up and running, and now, a lovely blog designer is "prettying it up" for us. Stay tuned because we are extremely excited about this big move!

The new blog will be able to have posts and pictures in one tidy little place. There will even be automatic emails sent out with each update to those of you who choose that option, not ones sent out by yours truly. However, we're making this change first and foremost because COTA initially gives you two years to meet your fundraising goals, during which time you must use only their website. After those first two years, you are asked to use a different blogging platform. This does NOT mean Keegan's COTA account will be closed! On the contrary, it will remain open and active for the remainder of his lifetime. The online donation page will remain active, as will comapny matching, direct donations, etc. COTA just generally tries to focus fundraising during the first two years. As you can see by clicking on the "donate" tab above, we have met 75% of our initial fundraising goal of $50,000. And friends, let me guarantee you that every single penny of that (and more at times, thanks to amazing COTA) has gone directly to Keegan's transplant-related medical expenses and absolutely nothing else. Additionally, every penny raised for Keegan has allowed COTA to care for other families in need during their child's transplant. We are completely in awe of your continued generosity, love, support, and prayers for our Bug. I know it's been said a million times, but it's so true. We are blessed beyond measure by each of you.

Keegan is doing well. Most of our week is now taken up by feeding, occupational, and speech therapy, with generally at least one doctor or hospital visit per week. Keegan began more structured speech therapy at Baylor this week, so we are excited to see where that takes him. On the feeding front, we have taken a slightly new direction. About three weeks ago if you remember, Keegan's intestinal problems got very bad, and he stopped eating all together for awhile. His formula was his sole source of nutrition, and low and behold, he started having normal (NORMAL!!) diapers after a few days on only his tube feeds of formula only. Once he felt better and started eating again (his entire repetoire consists of cracker-like carbs, yogurt melts, and some stage 1 baby foods), his intestinal issues went back to the way they were. After talking this over with our GI doctor, we finally have a diagnosis for Keegan! The doctor said these new symptoms were the hallmark of a "functional short gut", or someone whose GI system acts like one without sufficient length of intestines. Basically, you have SO much intestinal tract (20-25 feet normally) because it takes food that long to be properly broken down and absorbed, especially fats. Just like someone without proper length, Keegan dumps what is too difficult for him to absorb.

You may be asking why we haven't been able to have this official diagnosis before now. Good question. It has taken 9 months for Keegan's system to heal enough to even be able to properly digest and absorb his specialty formula (ironically, or perhaps fortuituously, he's already on a formula designed for short-gut patients, thanks to our genius team in Boston). Now that he is digesting this formula, it is clear that this is the appropriate diagnosis. What does it all mean though? Not much, just peace of mind. He's already on the proper formula and has the g-tube for support. If it took 9 months to adapt to the formula, you can imagine it will be a long process to adapt to breaking down normal foods. The doctor said that most true short-gut kids are off the g-tube as a source of main nutrition and eating somewhat normally by the age of 5 or 6. This surely gives us hope and some reasonable expectations. As for a reason Keegan's intestines failed? Your guess is as good as anyone's, but it was likely from oxygen deprivation to the organs during his initial surgeries, ECMO, and post-transplant period. If this means Keegan's still eating stage 1 baby foods on his 3rd birthday, so be it. God has Keegan's future firmly in his grasp, and we will continue trusting in Him.

As for the other news many of your have been asking about, our new baby GIRL is doing well so far. That's right, Keegan's going to have a little sister. We saw our perinatologist on Monday to get our first look at her heart, and so far, so good. Four chambers, input/output tracts look ok at this point. All other organs and measurements are good too. We will see a cardiologist beginning next month to have more detailed echos as her heart forms and is more visible. I'm almost 17 weeks now, and my due date is currently June 20, Father's Day. If she's anything like her older brother though, she'll be early. And to answer your next question, yes, we are pretty certain of her name - Audrey Moyer Harrison. It's not set in stone yet, and I'll save the explanation for another post. Meanwhile, thank you so, so much for your continued prayers for all four of us.

I try to end most of my posts with something a little more insightful. Sometimes for y'all, but usually for me. After putting all our troubles (and praises!) in writing, I'm usually in need of a little spiritual pep-talk, so I figure you might be too. But the truth is I'm weary. I'm plumb tired - mentally, emotionally, spiritually, physically. A good lot of the time, I get through the day without thinking about how different our life is, how unfair it can seem sometimes; it just is the way it is. But with a new baby on the way, it changes things. I worry too much about things I can't change. Today, I watched Keegan sleeping, and I thought of how much I still think of him as a baby, as fragile. But he is one of the strongest people I've ever met, even at 2 years old. I wonder if I'll get to see him grow up, if I'll ever have that moment of realizing my son's no longer a child. Things moms really shouldn't have to think about. And it makes me tired. That's when I have to really struggle to conciously be aware of and grateful for God's redeeming love for me, for each of us. He came so that we might be given new life, so that our burdens on earth would not crush us. To suffer with us, as much as for us. Who am I without His love? I am weary, worried, and tired. And that's not who I want to be. Do you?



"Come to me all you who are weary and burdened, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11:28-30

"Therefore, we do not lose heart. Though outwardly we are wasting away, but inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

Maddie

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