Tuesday, December 29, 2009

Christmas 2009

Whew! We're still recovering from the Christmas whirlwind! As crazy as it was, we are so thankful to be able to celebrate at home and with so much family this year. We were also blessed with a first-ever White Christmas with at least 3 inches of snow on Christmas Eve that stayed in our yard until more snow fell today. We've posted a few new pictures HERE of some of our Christmas fun. We hope that each of you had a blessed holiday. We certainly had a lovely one, celebrating the birth of our Lord and Savior, Jesus Christ.

That's all for tonight. We're snuggling up inside as more snow and cold weather wraps up 2009. We wish you all a safe New Year's Eve and all the Lord's blessings in 2010! More in the new year...and decade!

Tuesday, December 22, 2009

Cardiology Clinic

Keegan had a good, although long, day at cardiac transplant clinic yesterday. The only thing slightly off was his bloodwork, but when is it not? All in all, we decided not to change anything at this point. Dr. Barnes, his transplant doctor, did not want to "rock the boat" this close to Christmas. We are so thankful for that! There are one or two meds we may change/add in the New Year, but other than that, Keegan got a really good report. He had his last H1N1 shot and breathing treatment too. We were happy to get a green light for Keegan to celebrate Christmas at home this year!

Keegan also was a bearer of his annual bags of homemade Christmas peppermint chocolate to the hospital yesterday, and with it, he bore some news for his transplant team. After being questioned and hinted at since pretty much the day after he was transplanted (yes, I'm rolling my eyes at you Kris, Lisa, Susan, and Stephanie!), Keegan was finally able to tell his team that he will be a BIG BROTHER next year. Yes, you read that right! We're expecting a new addition to our little version of "normal" next June. Although not planned and certainly not prepared for, we are trusting the Lord's plan and timing is better than ours. We are certainly grateful for this unexpected gift, and we know that Keegan will be an outstanding big brother. Still, we can't lie and say that we're not scared for what our future holds. The baby and I will be closely followed by our dear perinatologist and our cardiology team at Children's. We'll get a preliminary look at the heart on January 4 and begin fetal echocardiograms in February. Big Daddy (my dad) said that he believes this is God's way of telling us Keegan will be ok, and I certainly pray that he's right. There will be a lot more bumps in our road than other families - birthdays and holidays missed for hospitalizations, explaining why our family can't do all the things others can, etc. We don't even know how to care for a normal baby! However, I am thankful for our amazing transplant team that understands our fears and are always there for us through it all. They truly are more than Keegan's doctors; they're our friends, supporters, and a source of strength. We are always thankful for our amazing family and friends, who we know will lift us up emotionally, spiritually, and even physically through good times and bad. That is truly a blessing learned through Keegan.

Since Keegan was born, I have to admit that the Christmas season leaves me thinking more about Mary and Joseph than ever before. Lately, I've been quoting the adage "I know God won't give me anything I can't handle, but I wish He didn't trust me so much!" I can't help but think that Mary or Joseph must have coined that very phrase!! Can you imagine the anxiety Mary must have had as an unwed mother, accused of breaking the vows of her betrothal? Can you imagine how she might have agonized over the fate of her son? I think I have a little bit better understanding now, not only just as a parent but as the mother of a child with an uncertain future. What about Joseph? Did he worry how he would provide for this new family? Did he lose sleep about whether he would be able to protect his son, keep him from pain, or simply how long he would be blessed to have him to hold? I hope he and Mary worried about these things...it would reassure me that I'm not alone. But I know their faith was stronger than mine. I pray that I can learn to ask less questions of God and trust more, to place my faith in God's plan, to respond as Mary - "I am the servant of the Lord...may it be to me as you have said." (Luke 1:38)

The following is quite possibly my favorite Christmas song ever. I just get it. The love, the fear, the uncertainty, the neverending desire to have it all just be ok. If you'd like to listen to this beautiful song, click HERE. I am so thankful to be spending this Christmas at home with Keegan, and I am even more thankful to have each of you in our lives who helped us get home and stay here. Thank you from the bottom of our hearts. We wish you all a very Merry Christmas!



JOSEPH'S LULLABY - Mercy Me
Go to sleep my son; this manger for your bed.

You have a long road before you; rest your little head.

Can you feel the weight of your glory? Do you understand the price?

Does the Father guard your heart for now so you can sleep tonight?

Go to sleep my son; go and chase your dreams.

The world can wait for one more moment; go and sleep in peace.

I believe the glory of heaven is lying in my arms tonight.

Lord, I ask that He for just this moment simply be my child.

Go to sleep my son. Baby, close your eyes.

Soon enough, you'll save the day, but for now, dear child of mine,

Oh my Jesus, sleep tight.


**NEW PICTURES ARE UP. Click HERE to see them.

Tuesday, December 15, 2009

Update

I find myself apologizing for the lack of posts alot lately, but honestly, we're trying to stay so low key around here that I feel there's just not alot to say. Then, I wait too long and the post turns crazy long! Oops.

The garage sale went very well, raising about $1500 for Keegan's COTA account! This was much needed, as Boston literally drained his account (and then some). We cannot thank everyone who helped or donated items (or just money) enough for your efforts. We hope to be able to do another fundraiser of some type next spring to help bolster Keegan's reserves for next year. Keegan's COTA "campaign" is only considered "active" for two years, but money can be donated to his account for his lifetime. As you can see by clicking the "donate" tab above, we have almost met 75% of our original fundraising goals. COTA has been a lifesaver for us the last two years, helping us with all transplant-related expenses. We know firsthand what a blessing that kind of help can be, and we are so glad that every donation made to Keegan's account enables other families in need to be cared for before, at, or after transplant. COTA is able to guarantee that all funds donated to Keegan's account are available to him as needed, but it also is able to use those funds to help cover the needs of families who may be unable to fundraise immediately. So when we thank you for donating to Keegan's COTA account through events such as the garage sale or just the goodness of your heart, please know that we are also thanking you on behalf of all the transplant kids that COTA helps - families in hospitals far away from their homes, families without insurance to cover the millions of dollars associated with a transplant, families who have lost jobs to be with their ill children. Transplant is a rough road, and it helps immensely to know you don't have to go it alone. Thank you, thank you, thank you for helping us on this road!

Keegan is still at home - for a record 4 months by next Monday! He finally seems to have kicked the runny nose plaguing him since Thanksgiving. As highly, highly annoying winter lock-down is, it seems to be working!! I tell ya, I'm SO looking forward to Keegan getting some new toys for Christmas - I'm getting tired of what we have now! Ha! He has a GI appointment on Thursday, and he has his big cardiology appointment next Monday. We won't run labs again until then. Still waiting to start his more structured spech therapy at Baylor; we'll hopefully get that scheduled soon. He's used all his covered therapy visits through our private insurance, so we have to wait for them to deny it, then for Medicaid to review and approve it. He's still doing well in occupational therapy, but I wish I could say the same for feeding therapy. His medical feeding issues and typical two-year-old behavioral issues seem to have clashed and come to a head. It is very frustrating for us because he has taken to not eating at all some days, and when we try to follow the "behavior modification" guidelines, it very quickly becomes a negative experience. The other frustrating aspect is that it's become very apparent that if he doesn't eat by mouth (just his specialty formula by tube), his GI system is doing SO well (great diapers)! Then the minute we add the food back in, he's right back to the not so great. We'll be discussing it with his GI doctor this week, and I just pray that his weight hasn't suffered from it.

Last post, I told you that Children's had contacted us about using Keegan's picture for donations this Christmas. Well, the e-cards are up! This Christmas, if you would like to make a donation to Children's in honor of someone, you can choose to send an e-card with Keegan's adorable 1-month picture! The photo was taken at Keegan's post-transplant discharge conference in October 2007. Click HERE to see the e-card...and of course, to send one! "Make life better for children" this Christmas!

In other family news, my sister, Alex, had a successful but radical knee surgery today (I think it was called a distal femoral osteotomy but don't quote me, plus some fancy plasma-like substance where her cartilege should've been). Thank you to those of you who follow us on Twitter or Facebook and kept her lifted up in prayer today. The doctor said the surgery went absolutely beautifully! She will be on crutches for at least six week and is facing a very long recovery period. Still, we are hopeful that today's procedure will give her over 10 years before needing a total knee replacement. All this at the ripe ol' age of 27!!

We will post again after cardiology on Monday. Until then, we are trying to enjoy the advent season in preparation for Christmas. Did you know the word "advent" comes from the Latin adventus, meaning "coming"? During this time we are waiting on the coming of the Lord, Jesus...his birth, but most importantly, we are reminded that we are waiting on the Second Coming of the Lord and to prepare ourselves spiritually it. I find so much meaning in the "waiting" of advent. We are constantly reminding ourselves that in our yearning for Keegan to be healed, we must wait on the Lord's timing. It is His plan that matters, not ours. We are waiting to find peace and rest in Him. But because we are most importantly waiting for His final coming, we must strive daily to put our hope and trust in Him, to lay our troubles down before Him, to be His hands and feet here to others. What are you waiting on the Lord for now? We pray that you find it in Him this Christmas.

We wait in hope for the Lord; He is our hope and our shield.

In Him our hearts rejoice, for we trust in His holy name.

May your unfailing love rest upon us, O Lord, even as we put our hope in You.


Psalm 33:20-22



**A few NEW PICTURES are up! Thanks for checkin' in on our Bug!***

Thursday, December 3, 2009

Garage Sale!

It's GARAGE SALE time!! Gray's parents and their friends are hosting a garage sale this SATURDAY, DECEMBER 5, with all proceeds benefitting Keegan's COTA account. The sale will be from 8am-4pm. Spread the word, and stop by yourself! Big thanks in advance to Mark and Linda for their work in hosting this event.

Just a quick update on Keegan. We have increased his shots, despite a lack of weight gain. His hematologist and transplant team felt his white count was too low at his previous dose to get him safely through the winter. Keegan developed a runny nose on Thanksgiving day and had a day or so of elevated temps (not fever range though). It hasn't gotten worse, but he is still battling a runny nose or congestion. We're confident it's just allergies or the cold weather, but it still is nervewrecking for us. We've gotten so comfortable being home for almost 3 months, and we would love to get through the holiday season at home! Still, we know that God has Keegan firmly in His grip, and we are trying to rest in Him.

We have weight checks, GI, and a big cardiology visit left before Christmas, but until then, we are enjoying the Christmas season and cool weather. We missed getting pictures of Keegan during the first snow of the winter yesterday, so I hope it's not the last one! We also got a request from Children's for usage of one of the many photos of Keegan for an upcoming hospital fundraiser, and of course, we said yes. We will be certain to update again with medical updates, pictures, and more info on the Children's fundraiser soon. Until then, spread the word about the GARAGE SALE!! I know there will be furniture and a few other big ticket items available! God bless, and take time during this busy time to remember the true reason we celebrate Christmas, the coming of our Lord, Jesus Christ!