Ride for Mike 2011

It is with a little tinge of sadness and a whole lot of thankfulness that I can say the 2011 Ride for Mike is officially over.  A little sadness because it's a bit like the day after Christmas - you have looked forward to it for so long that it's going to be a little disappointing not to look forward to it until next year.  And so much thankfulness and gratefulness to all those who made today possible.

I know I will probably forget someone, but I'm going to try to mention those that I know had a part in today and in the weeks leading up to today.  First, Jonathan and Annette, thank you so much!  Your love and encouragement have touched our lives in ways we will not forget.  And Emma, Jonathan, and Josiah, thanks for putting up with all the hours your dad spent training and riding for this event!  :)  Mike and Janet McCaskill, thank you so much for all you do behind the scenes to support Ride for Mike.  Even though I never met your son, I know he must have been a wonderful person for so many people to have loved him so much.  David McQuaid, thank you for taking your time today to support and ride part of the way with Jonathan.  You not only encouraged Jonathan, but you blessed us as well.  Eddie Helton, thank you for your support and riding a part of today's ride with Jonathan as well.  I'm looking forward to seeing the pictures!  :)

And for everyone who prayed for today's ride, participated in the Ride for Mike Family Fun Ride and picnic, or donated to Ride for Mike, thank you!!!  From the bottoms of our hearts we thank you.  May God bless each of you for blessing our family.

Nancy

Ride for Mike

The 2011 Ride for Mike is well underway with Jonathan having already completed the first leg of the trip. He is already in Saluda, SC, enjoying a short break and a Subway sandwich.  :)  The next part of the trip will take him to Orangeburg.  This is going to be the most physically demanding section of the trip since it is mostly rolling hills.  Please continue to pray for Jonathan and David, who will be riding this stretch on a bike with him.  Also, a big thank-you to Eddie for jumping on a bike for part of the last section and encouraging Jonathan.  We are so blessed to know these men and their families care so much for our little girl.

Jonathan was almost at his donation goal this morning.  Would you consider going to Ride for Mike to make a tax-deductible donation?  All proceeds will be used to cover expenses directly related to Rebekah's care, especially during her upcoming surgery in December.

Nancy

Bekah Dace

Rebekah has recently started to say her own name.  Previously, she would say "Boo" (her nickname) or "I" or sometimes "my" when referring to herself.  

Despite the fact that she was obviously absorbed in turning the pages in her coloring book, she took time to tell Daddy what her name is.

Nancy

Ride for Mike Family Fun Ride

Today was an absolutely beautiful day for the Family Fun Ride.  After starting around 40 degrees this morning, the temps warmed pleasantly to the upper 60's for the afternoon.  Rebekah was feeling great, and we very much enjoyed the picnic at the conclusion of the Family Fun Ride.  I'm glad we made the decision to just attend the picnic and not the ride; Rebekah was beyond tired by the time we left the picnic.  I don't think she would have done well with the ride and the picnic.

 Jonathan and Rebekah - best buddies!

 Rebekah enjoyed giving high fives, fist bumps and even "giving skin" to all the grown-ups that came to make a fuss over her.  But I have to say, she really loved the nice little playground adjacent to the picnic area.  She and her brothers and some other friends played there for almost three solid hours!

 Enjoying a much-deserved barbecue lunch!

The Pitt Crew came and catered a barbecue lunch for everyone, and let me tell you - it was good!!  They came complete with smoker, beans, coleslaw and of course, the barbecue sauces!  Yummy!

Mike and Janet McCaskill are the parents of Mike McCaskill who Jonathan rides in memory of.  We were so blessed and excited that they came, and Mike even rode in his first half century ride.  Congrats!

So there were actually two rides this morning.  The first was a family-friendly ride up the Swamp Rabbit Trail.  That ride was approximately 11 or so miles.  The second ride was a 50 mile ride partly up the Swamp Rabbit and then on through Greenville County and back around to the park where we had the picnic.  There were eight brave riders who attempted that ride (and let me give credit where it is due - I wouldn't even begin to TRY that ride, so I am in awe of those eight!).

The group experienced falls, injuries, a flat tire and a bike that broke (literally!).  But they all made it to the picnic in spite of the troubles.  We are hoping that all of these incidents are out of the way and Jonathan won't have to deal with any of these issues on Monday!  :)

Rebekah tried on the Low Cadence bike helmet.  Maybe it will fit in a few years.  :)

Jonathan will be leaving Greenville Hospital around 6:00 on Monday morning.  The first leg of his trip will take him to Saluda where he will be joined by David McQuaid.  Interestingly enough, David's sister, Catherine, and I were roommates my senior year of college.  Small world, isn't it?!  (Catherine, if you read this, please email me! I would love to see you when you get back to the States!!)  The second part of the trip will be from Saluda to Orangeburg, and will definitely be the most taxing part of the trip.  The final part of the trip will be from Orangeburg to MUSC.  Jonathan (or his wife, Annette) will be posting updates on his progress at lowcadence.com.  

 I snapped this picture as we were leaving the park.  I think it took Rebekah about 4 seconds to fall asleep!

We met many other people today that were so nice and all came to meet Rebekah and offer their support and prayers for her upcoming surgery.  One other person that I want to mention is Eddie Helton of eddieheltonphotography.com.   Eddie took quite a few pictures of Rebekah and the boys that I hope to be able to share with you in the next couple of weeks.  The really neat thing that I learned today is that Eddie's wife is Dr. Garganta, one of our (Rebekah's) absolutely favorite doctors!!!  Sadly, Dr. Garganta was out of town this weekend so she couldn't come, but we will get together with you soon!!  We missed you!

The excitement of the day proved to be a little too much for these two!

Once again we would like to express our sincere appreciation for all who came out to the ride today.  You all really encouraged and blessed us, and we are so grateful that you spent your Saturday to cheer on our little girl.  Please pray for Jonathan and David on Monday as they ride, and for Annette as she follows them in the car.  I know they would ask you to pray for safety and protection and that God would bless their efforts.

Nancy

How You Can Help

Rebekah's surgeon, Dr. B., called at the end of last week to discuss his thoughts on the surgery that has been proposed for Rebekah.  It was a long, intense conversation, and the bottom line is that Rebekah needs some type of intervention.  Her heart is beginning to enlarge, and that puts her on a course that none of us want to see. As far as the doctors involved can tell, there is only one option available:  the surgery to attempt connecting the large collateral artery branching off her right subclavian artery to her pulmonary artery to create some pulmonary blood flow to her right lung.  There are pros and cons to this surgery, and it is bordering on experimental.  No one has ever had Rebekah's anatomy, so this is an "educated-guess" type surgery to hopefully give Rebekah's heart some relief.  If it does not work, we are basically out of options.

We are still waiting for the surgeon's office to finalize a date, but it looks like the surgery will be taking place about a week before Christmas.  Many of you have asked for specific ways that you can help, so I thought I would try to list some things that would be helpful to our family.

First, and most importantly, please hold us up in prayer!  This surgery will be long and intense, and we are told the recovery will be harder than any of Rebekah's previous surgeries.  Please begin to pray for Dr. B and the cardiology team as they prepare for Rebekah's surgery.  We are praying specifically for wisdom for Dr. B as he will be setting a course for proceeding as he is in surgery.  There are no surgical notes from a previous procedure that he can consult to give him an idea of how to proceed.

Also, please pray for our family's health.  The next few weeks are so, so important for keeping Rebekah healthy.  Any sickness or decline in Rebekah's health has the potential for creating more complications and a longer recovery period.  Please pray for Drew and I and the boys to remain healthy, as well, so we don't pass anything to Rebekah.

As you can imagine, this surgery and recovery time in Charleston will not be without expense.  If you feel led, there are several ways to help that would be a huge encouragement to us.

1) Ride for Mike 2011: Jonathan will be riding from Greenville to Charleston in honor of Rebekah Grace in just two!! weeks!  We are so excited to see how God is blessing Jonathan's project and using it to provide funds for Rebekah's needs.  Ride for Mike is partnering with Helping Hands Ministries to distribute all funds received for specific needs.  These funds will be used for the "big" things such as a hotel and/or bills that will need to be paid.
2) Restaurant Gift Cards: As you might imagine, cafeteria food can get very old, very quickly!!  There is very little opportunity to make or keep our own purchased food anywhere at the hospital, so we have to purchase almost every meal.  Some of the restaurants in the hospital or nearby are Subway (lunches!!), Olive Garden, On the Border, Longhorn, O'Charley's, Moe's, Applebee's and McDonald's.
3) Gift Cards: Generic gift cards (such as Visa gift cards) or Wal-mart or Target gift cards are also very helpful for smaller expenses such as gas and things that Rebekah needs.  We have found in the past that no matter how many things we try to pack and think of before we leave, there is always something that we learn in the hospital that would make things easier/more comfortable for Rebekah.  It is nice to be able to run to the store to get those little things that are a comfort for her.

Another blog friend of mine recently posted about some wonderful ways to help those who have a medically fragile child.  If you have a few minutes to spare, read through Kate's post here.  She very neatly sums up the answers to our most frequently asked questions.  :)

Thank you all for praying for us.  I will be posting more details about what Rebekah's surgery will involve when I can think more coherently.  Right now I'm going to do a little reading and hopefully get some sleep.  Rebekah has been restless the last couple of nights, so I'm hoping to get a little more sleep in tonight!

Nancy

More questions than answers

 Well, we finally heard from MUSC today.....and it was not at all what we expected!  Please forgive me if this post seems disjointed and doesn't make a lot of sense.  Drew and I are still trying to sort through information right now.  If you have a lot of questions after reading this post, it's okay; we have a lot of questions, too!  :)

Rebekah (2), Caleb (3), Aaron (5), Justin (8), Zachary (9)

So, before I get into all the details, I'll give a quick update on yesterday's cardiology and GI visits.  Rebekah was a very good girl this month and actually gained almost a pound!!!! Can I say we are thrilled and excited to see so much weight gain after months of barely gaining ounces?!  I think we can directly attribute the weight gain to the additional amount of overnight feeds Rebekah has received in the last four weeks.  Whatever the cause, we are grateful for it!

The cardiology visit was pretty uneventful.  Rebekah rested beautifully during her echo and was an absolute angel.  I am so thankful that she is such a sweet girl (most of the time!).  I can't imagine having to take an uncooperative toddler into doctor's appointments, echos, x-rays and labs.  I know some of you moms do it, and I have the utmost respect for you!  The only slight change is that Rebekah's left ventricle is enlarged from the previous echo.  This is an indication that her heart is working much harder than it should be, and is consistent with the theory that she is shunting blood through her right lung that is just basically looping from her heart to lung back to heart without ever getting out to her body.  That makes her heart pump twice as much to get the correct amount of blood flow to the rest of her body.  It makes me tired thinking about it!

These are some of my favorite pictures of Rebekah.

 I especially love the black and white, in spite of the fact that 

Rebekah dumped a pail of water on her shirt.  :)

While we were in the cardiology office yesterday, Dr. L sent Rebekah's surgeon an email and copied the cath doctor asking why we haven't heard from MUSC about a surgery date yet.  Dr. L called me (early!) this morning, and this is where the story gets interesting.....

Dr. L received two emails this morning regarding Rebekah's surgery.  The first, from the cath doctor said that they had presented Rebekah's case at conference (in early September, which we knew about), and they had sent a request to the surgeon for a surgery date.  The second email was from Rebekah's surgeon, Dr. B.  He said the reason we have not yet received a surgery date is that he is unsure that this particular surgery is the best option for Rebekah. What??!!  So the last two months that we have been waiting under the assumption that Rebekah would be having surgery to disconnect a collateral artery from her right subclavian and reattach it to her pulmonary artery, and I find out in about 5 seconds that our surgeon is not on board with this plan!  I could definitely hear the displeasure in Dr. L's voice (believe me, he is a very soft-spoken, mild-mannered man), and I know he was not happy.  He, also, had been given information indicating that we were proceeding with surgery and were simply waiting to be put on the surgery schedule.

Dr. B (surgeon) asked Dr. L to let us know that he would be calling sometime this week in order to discuss his thoughts on this surgery and share his concerns.  And, I hope, answer some of our questions!  I know one of the reasons that Dr. B has some concerns is that it appears this collateral is not as straightforward as we had been led to believe.  Apparently, this collateral makes some unique twists and turns through Rebekah's body before it actually winds up in Rebekah's lung in what Dr. B calls "a confusing nest of collaterals."  One of the possibilities that Dr. L is pretty certain Dr. B will suggest is a second opinion with another group of heart specialists for a "fresh set of eyes and opinions."

Really we need to speak to Dr. B and get some more information and direction from him before we proceed with any kind of treatments or procedures.  There are some medications that Rebekah could take to improve her heart function, and there are some very tiny collaterals (that will never be able to be attached to her right lung) that could be coiled off in the cath lab.  All of those treatments, however, would be skirting around the elephant in the room - that collateral branching off the subclavian.

So, where do we go from here?  I have no idea! :)  It's hard to discuss your daughter with such very intelligent doctors and hear them say "we really don't have any answers."  But, I am thankful that we know the One who does know the answers.  God himself created our little girl, and her unique anatomy is no surprise to Him!

Thank you all for the comments, prayers and hugs today.  We really needed them!  Please continue to earnestly pray for wisdom for all those involved in Rebekah's care.  Also, if you feel led, please consider donating to Ride for Mike 2011.  All proceeds are tax-deductible and will be used for Rebekah's care and expenses.  And please remember to join us in Traveler's Rest on Saturday, October 22 for the Ride for Mike Family Ride and picnic.  We would love to see you there!

Nancy