Thursday, November 26, 2009

Happy Thanksgiving

"Be joyful always; pray continually; give thanks in ALL circumstances, for this is God's will for you in Christ Jesus." 1 Thessalonians 5:16-18

I am glad to have a day to stop and remember the many blessings in my life. I would like to think I am thankful everyday, but in truth, I probably go about way too much of my days without praising the Lord for the goodness he has given to us. But today, I am in awe of a single truth. God loved me so much that He sent His only Son to die on the cross that we will once again be reconciled in eternal life with the Father. How can you say "thank you" for that? Everything else that seems so important in life pales in comparision, but I am thankful for these things all the same.

I am thankful that Keegan is home and doing well overall. After last year, I am forever thankful for any holiday, no matter how small, we spend at home. I am more than ever acutely aware that there are hospitals full of families unable to celebrate the way they intended today. I am thankful for the amazing strides Keegan has made in the last 12 months. He has gained 13 pounds, is off IV nutrition, and is taking some food by mouth. His liver, kidneys, and heart are working well, and his GI symptoms are mainly under control. This morning, he woke at 3am with a runny nose, and although he has been otherwise fine today, I know that could end at any minute. We've increased his shots already, and we may have to go to daily shots to help him fight whatever this might be. I am thankful for the medicines he takes to keep him and his heart healthy.

My friend, Amanda, has reminded me that no one else on this earth was chosen to be Keegan's mom but me. Gray and I were chosen to be his parents, knowing the journey that he would walk here. And if that journey were to end tomorrow, I would be grateful for every day, good and bad. This is not the plan I had in mind, but I have never in my life been more certain that the Lord's hand is never far from my reach. And, I am thankful that a family we have never met made a choice in their grief to give my son life! I am thankful that because of Kevin, LaMonica, and Johnston, I can hug my son today and feel God's very presence surround me.

I am thankful for my family, my husband, and my home. I am thankful that I can afford to spend time with my family today with abundant food and plentiful love and laughter. I am thankful for the many people in my life whom I would not have met and loved had it not been for Keegan. I am thankful for the many, many people who have prayed for us, lifted us up, and given us strength in the last two years.

Yes, I am thankful today. And I will be tomorrow and the next day. If tomorrow it were to all be taken from me, I would still be thankful. Because I have put my trust and hope in the Lord, I cannot help but praise Him, no matter the outcome. I pray that you take the time to realize His hand in your life today, and give thanks.



"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident in this, that He who began a good work in you will carry it on to completion until the day of Christ Jesus...And this is my prayer: that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ - to the glory and praise of God." Philippians 1:3-6, 9-11

Wednesday, November 18, 2009

Status Quo

Things have been pretty status quo around here. We apologize for the lack of updates; we didn't mean to worry anyone. We just needed to take a break from the computer for awhile. With Keegan being under lock and key at the house, we unfortunately don't have any interesting news to report. Just therapy, doctor's visits, and getting bored with his toys at home.

Recently, we had to stop all of Keegan's solid food except for a few crackers for a day or two because the stress of new foods really tore up his intestinal tract. After a few days, he started to rebound. We enjoyed a couple of days of fairly good diapers, good sleep, and a happy boy, but as we expected, things have started to go back to the old normal. Frustrating. Still, his oral feeding skills are progressing. He can now eat apple slices, and we're working on carrot sticks! He eats stage 2 baby foods very well and sometimes stage 3 foods also. His feeding therapist says he is progressing well and right on target. The biggest challenge is still making sure we don't push him too hard and cause him more pain.

We still have a break from cardiology until next month. Keegan had labs and his breathing treatment today. The respiratory therapist let him watch Finding Nemo during his treatment, and he threw the most massive fit when we had to turn it off to leave. The nurses had a good laugh at that, saying he was the only kid on the planet that doesn't want to leave the hospital! Keegan's labs looked remarkably good for him, except his white blood cell count. We are waiting on word from his hematologist if we need to increase his shots to bring the count up. Last time, she was hoping Keegan would gain some more weight before we had to increase his dose (which he didn't, down again today). We obviously want to keep Keegan as healthy as we can, and a low white count means he has very little defense available. As we've seen before, Keegan's white blood cells don't rise to the challenge of an infection, they run from it. We are enjoying being home so much! We just want to keep him here!

That's about all for now. We appreciate your continued prayers and support for our Bug. He means the world to us, and we are looking forward to spending Thanksgiving at HOME this year! More soon and pictures too. Have a safe, relaxing Thanksgiving, y'all!

Sunday, November 1, 2009

Halloween

Well, Keegan successfully celebrated Halloween at home! Yeah! He even trick-or-treated a little bit, and although he didn't quite understand the concept, it seemed he had fun anyway. He was the courageous lion this year and too cute! We originally thought the Tin Man would be a good idea, since he is the character from the "Wizard of Oz" who gets a heart. However, we couldn't pass up the adorable lion costume, and Keegan did show plenty of courage this year! We were just happy that he wore the mane because the first time we tried it on him, he had a complete meltdown. To encourage him, Gray and I borrowed Dorothy and Scarecrow costumes (thanks, Ben & Abby!), and Aunt Alex wore the bunny costume. We may have looked like a funny bunch, but it worked!

Mamie, Big Daddy, Alex, Oma, and Pops came over for chili, ghost cake, and trick-or-treating. We purposefully went out before dark to be the only ones out and about in our neighborhood, thus minimizing Keegan's exposure. We strategically picked the houses of our friends, and it went pretty well. Keegan wanted to go inside each house, and he didn't quite understand why we were making him take something from everyone (he doesn't yet know the sugary goodness of candy). Still, he LOVED running around the neighborhood, and nothing melts your heart faster than watching that little lion run - mane waving, tail dragging. Too cute! See photos of our Halloween fun HERE!

On the medical front, Keegan has gained 3oz this month. We are SUPER happy with that. as he has had quite a rough month with his GI symptoms. We're still consulting with his doctors on how to handle it. He may have to go back on the oral antibiotic, but we're exploring a few other options. We are hoping not to have to take all the solid foods away, as he is doing wonderfully in feeding therapy. We are trying to introduce new foods very slowly, but it can be difficult not to frustrate him. He's finally made it to stage 2 baby foods, even a stage 3 once, and a slowly widening array of "crunchy" finger foods. Still, it seems to be taking a toll on his tummy. We don't want him to be in pain, but we don't want to backtrack too much either. I know that's a little vague, but it's simply the frustrations of finding Keegan's balance in eating normally, gaining weight, managing pain, and controlling his output.

Thank you for all your prayers for our sweet friend, Hannah. Her celebration of life service was beautiful, fitting for the princess she is. I have seen an amazing number of butterflies lately, one of her favorites. Another child received their angel heart last week, and I just know Hannah had a hand in it. I continue to be inspired by her parents, Amanda and Jason. What an amazing miracle they shared with us in Hannah. I long to have their family's faith and pray that Keegan too will know and love the Lord as Hannah did - a precious child who knew Him so intimately that she referred to Him as "my Jesus." Amazing.

Amanda is a poet, and she writes so beautifully from the heart. I love this poem that she wrote about Hannah. It could easily be Keegan or any of the other little fighters we know. It reminds me every day to be grateful for, as our friends Paul & Angie put it about little Avery, the gift of getting Keegan - of the blessing of getting to love him, hug him, and be inspired by him. Please continue to pray for the families of all of our friends, especially Hannah's, and of course, for Keegan. Amanda's poem describes our lives every day with our miracles. Not the days we would have chosen, but the ones we are blessed to have.

What is the plan He has for you?

What is the plan he has for you?

I ask most every day.

It has to be huge, or He wouldn't let you stay.

What is the plan He has for you?

Is it bringing people to their knees and showing everyone Satan's defeat?

Is it bringing praises to his name or glory all the same?

Is it showing the world that miracles occur?

What is the plan He has for you?

I long to know the truth.

God, will show me one day soon!