Monday Surprise!

Summer Greetings Folks!

Just a note about Monday's wonderful suprise. Carrie called me this morning and she and the "babies" were able to stop by the church today! Of course we were all thrilled to see them! It took Genie and I both to keep up with Heath and Ella Brooks-what two busy little folks! Whew! We enjoyed seeing the new building spaces together(particularly the youth spaces that Carrie envisioned-especially the stage in the Sr. High room!). Ella Brooks insisted on going to a "classroom"- a.k.a. her old daycare classrooms. We carefully did a "drive thru" in CDC with Heath in a stroller so we didn't pick up any "bugs"! Better safe...

The best part of the day is to see Heath looking so well and walking so fast his little chubby cheeks wobble when he walks! Ella Brooks was quite the great big sister - sharing her goldfish crackers with her little brother. What a great sight!

It was also great to hear that the Tuttles love their new home, all the wonderful space and enjoy being the proud owners of only ONE home!

Carrie reports that Heath is doing so well that his next heart cath. looks like it will be not be as soon as the doctors expected. The doctors felt like Heath was doing so well that the heart cath. could wait!

We all enjoyed a great visit today. Now matter how long the Tuttles can stay it somehow seems too short a visit! Thanks Carrie, Ella Brooks and Heath for stopping by-we always love seeing you. "Gran Sarah" just never gets enough of those sweet babies!

Blessings,
A very happy "Gran Sarah"

New Tuttle Family Update!

A great update from the Tuttles!

"I have downloaded some pictures today, and I thought I should probably write an update for you, since SO MANY FOLKS have asked about why we haven't had a blog update since April. Sorry. it has been such a busy time for all of us, I think!!

I am writing this note from my kitchen table in my new house--2 Breton Place, Durham, NC 27707, by the way. We love our new house. It is so much good space, and it is just perfect for all of us. We hope we'll live in this house for a VERY long time! That is a really nice feeling. It is also a nice feeling to not be juggling the details of 3 houses! It was starting to make me a little crazy (yes, many of you are laughing about whether this would have been the first time I thought I was a 'little' crazy, I know!).

We closed on the Greensboro house on May 28. We had a lovely morning clearing out the rest of the yard stuff with some of our good buddies, the Burris family, and we are grateful to Betty Rissmiller, who took such good care of us in getting that house sold! Once again, thanks to our wonderful families and friends, we got moved on memorial day weekend to our new house (and celebrated a very exciting 6th wedding anniversary in the middle of mounds of boxes!).

The guys from TROSA moving company were awesome! I am constantly "moved" by how generous our families (and friends) have been to us during this crazy roller-coaster time in our lives. We really couldn't do it without them.

Our toughest time recently has been in the very sudden death of our dear friend, Bill Bartholomay, who chaired the search committee that brought Chris to Westminster. He died suddenly on Memorial Day afternoon, and we ask you to keep his family in your prayers. I will say i can feel myself smile as think of the glorious way his life was celebrated at Westminster last Monday morning.

"How are you really doing?" folks keep asking. Really, fine. Tired, yes. Heath's health continues to improve. He is still not sleeping very well, although we are realizing that it might be due to some bad sleeping habits (yikes, normal kids stuff!) and not anything else. We had a scary night 2 nights before we moved with an ear infection that kept him up all night. My instinct told me it was not like the last emergencies, but it is so hard not to feel your anxieties rise once you have been through all that we have with his health. He is well-recovered and giving us all a run for our money. Anyone who is around him says, "wow, he is BUSY!" He is walking everywhere. We were also given a slight break on the getting out in the world stuff too. We were able to start going to church at the 8:30 service (less people) this week. He was so excited. When we were in the car later, Ella Brooks said, "Mom, it was so much fun to have Heath at church today!" It made me smile. it is funny how we still cherish the little things. Ella Brooks is doing very well--she is so tall, and full of mommy-ing and orders (I can't imagine where she gets that from...) She is such a joy.

We have been excited to get to see old friends recently (the picture is with Dana and Caroline Irons)--friends from college with their kids, from Burlington, from Greensboro. We have even been able to get out on the town a little bit, thanks to our dear families and friends (Beth and Barrett Patty even got a night of medicine, play and bed this weekend! thanks!) Mattie Anne Walker, one of my former youth and now college student, has been coming to help me out with babysitting all semester and this summer as we have moved, which has been such a blessing. Ella Brooks will say, "is it a 'mattie anne' day?" and it makes me laugh. Her coming made it possible for me to get out of the house a little and get some much-needed moving stuff done. And tomorrow, we're headed for the first of two short trips to black mountain/montreat to see family and good friends coming in from far away!! We can't wait!

We watched today as the green lumina was carried away by the WUNC donation people. Yes, it finally was time to say good-bye when the words "stranded" and "blow up" were used in the sentence by the car guy...luckily we have use of a few cars of family members for the month, and then we'll start CAR SHOPPING! The fun never ends. But, I am reminded as I say that that it is normal life "fun" stuff. We're grateful to be there for a while.

Heath has an appointment on June 25 at Duke, and we're waiting for a date (probably somewhere around then) for his 6-month cath! I can't believe it. I went to get medicine the other day at the Duke pharmacy, and ran into one of the cardiologist fellows who took such good care of us. It is amazing how much the folks at Duke feel like family. On another wonderful note, Olivia, Heath's roommate in the PICU who we have asked you all to pray for periodically, has been released from the hospital. She had a heart cath today, and hopes to be headed home to Asheville soon! We are hoping to have the two of them meet next week sometime for the first time. We'll take pictures, I promise!

Well, there you are. I am sure there is something else I would have liked to write, but Chris just said, "are you still writing the blog update??" That is my cue.

Blessings to you all. Hopefully we'll have even more good updates soon. Love to you all. Cherish every moment--we're trying!

love, carrie"

A note from Carrie....

We are doing quite well. Getting ready to close on our new house this week--so excited! We're hoping to have sold our Greensboro house (under contract!) and we're getting ready to move out of this rental house. So many residences! The other day the insurance woman said, "Mrs. Tuttle, we got a great final number for your new house's homeowner's insurance!..." then we worked through that one. "What do you want to do about the homeowner's insurance? when do you want to stop it?" we finished that one. Then, she said, "hmmm...now what about this other house in Greensboro, what do you want to do with that one?" (oh yes, we need to keep that too..." :) It made me smile.

We had a really nice weekend. Chris' mom was here, which was so nice. ella brooks, chris and i got to have a nice evening out with some of the folks from westminster at a supper club. This afternoon when they were showing our rental house for the 14th time *(UGH!!), we went out to my mom and strow's house. We met up with my cousin, Margaret, and we went walking at the Haw River. it was so beautiful, and the moment that we watched Heath stick his fingers in the water with such joy was a beautiful moment. Then, that crazy, fearless guy started trying to WADE in the WATER!! He was so excited. I sent you quite a few pictures of our time in the water. Ella Brooks has so much fun too. It was a such a perfect afternoon, and i wanted to share some photos.

I sent another picture of Heath in the refrigerator. Everyone always asks about what we do on a daily basis. This is one of our daily activities--dragging my sweet boy out of the fridge. He loves to reorganize the shelves. I know it is bad for the environment, so I try to shut it quickly, but he sees the door open and bolts for it! It is pretty funny, and if you see one of us, you can ask us what his favorite thing in the fridge is...i won't print it on the blog!

All in all, we are doing well. Heath is doing well--other than still not sleeping very well. He fought us until 11:15 last night! But, if that is our worst issue right now, I suppose we'll have to take it.

love to all.
carrie

Friday, April 17, 2009

A great email from Carrie...

Wow, Sarah, it has been while since we have sent you an update for the blog. Whew! We've all been quite busy!

I am not sure where to begin.
Let's start with the article--Last Sunday (Easter) there was an article about our family and the support of the church community in the News and Observer. It was a little shocking that it was on the front page!
Here is the link: http://www.newsobserver.com/news/story/1482323.html

Chris and I realized after recounting our WHOLE story for the reporter a couple Saturdays ago that it was the first time that we had told the whole story together since everything happened. It was much more emotional than we had realized. Obviously Yonat (the reporter) did not have the space to recount our whole tale, but I think she did a lovely job telling about how the church communities have held us up in this whole time (she is a reporter for the RELIGION section). We are so grateful to Westminster for loving and welcoming us, and for First Burlington (the youth had a wonderful fundraiser for us a couple weeks ago and it was SO GREAT to see you all!) and Faith for continuing to support and pray for us.

What she could not possibly have done was to really make clear how MANY PEOPLE in so many ways have really held us up--alongside our churches. She wasn't able to express the love and unbelievable gratitude that we have for our families, who dropped everything and lived and breathed all our moments of horror and happiness with us. Or the folks from Cary Presbyterian for putting themselves out there to create the Good Samaritan Fund (we asked her not to mention this because we didn't want the church to get an onslaught of requests to make more work for them after all they have done for us). Or our friends, who flew in or drove in on a moments notice. Or the extended "family" of faith who held us up all over the world. Or the people we didn't even know, like the wonderful teachers at my mom's new school who made Christmas happen for Ella Brooks. Or the co-workers or professors who made it possible for our families to leave their jobs to be with us. Yes, I could go on and on and on.

And particularly--the staff at Duke Hospital--who became more like family to us during our long stay. They treated us with kindness and grace. They loved our son like he was their own. They gave us the courage to keep hoping.

Yes, words don't really touch our gratitude to any of you...

There I am, feeling a little mushy and emotive in this beautiful springtime.
Sometimes we look at each other and can't believe where we've been--usually with a look over our sweet children as they laugh or as Heath smiles his slightly toothy (2 teeth and counting!) grin and seems to have sheer joy just being in the world, like he knows that he is lucky to be in world.

We had our clinic visit the thursday before last and they took away a medicine--magnesium--which was great because it was the one that has hurt Heath's tummy. They were thrilled with his progress and we don't go back until JUNE 25!!!
They gave us the go-ahead to make 2 short trips. SO, mom and I took the kids up to Northern VA to see my family! The cousins had much fun together, and Heath had his first egg hunt. Traveling went well, too. Sleeping, not so much, but Heath hadn't been sleeping well anyway.
Then, after wondeful Easter services at Westminster, we hopped in the car and headed to Black Mountain to see Chris' family. It was the first time that Bop (Chris' 97-year-old grandfather) had seen Heath since the day before his diagnosis in November. Visit, wonderful. Sleeping, not so great! (you will see a pattern here)

We're now working on getting ready for our next move. Yes, we have a contract on a fabulous house here in Durham and we will close on April 30. It is perfect for us, and we're so excited. (it is the house in the background of the picture with heath and chris walking)
As of yesterday, we have a contract pending on our house in Greensboro. Please say a prayer that THIS person qualifies for the loan. whew.
AND, they are also showing our rental house, so periodically I have to get both children and the DOG (who is now on anti-anxiety meds and doing so much better!) :) out of the house. Frankly, these regular "worries" I will take any day.

As we have done before, we would ask your prayers for our dear friends, the Landreths, and their daughter, Olivia, who was Heath's roommate in the PICU at Duke. The day before she was to leave the hospital, Olivia took a turn for the worse, and is back in the PICU. Please prayer for her healing, and for her family, who have been at Duke since December.

Gosh, this is long, but not so surprising, I have much to say.
love to you all.
carrie

Blessings,

"Gran" Sarah

First Steps!!

Good News!! Carrie called and left a message for me today that Mr. Heath took his first steps today. He took two for the physical therapist and four for his mommy. Big day! These wonderful milestones are a celebration for any child but we are especially grateful for this milestone for Heath. Hope comes in many forms....today it came in the form of little feet making their first steps. Praise God!

Blessings,
"Gran" Sarh

Funny, Funny, Funny

Rainy Thursday Greetings!

Ok, Carrie has sent me probably the funniest pictures ever. I have laughed so hard I've cried. Here is her latest update with an "explanation" for the pictures!

"Couldn't resist sending you these...:) hee, hee. you have to have fun some way, right??
This is what happens when you have an older sister and it has been raining for a month..." hee, hee.

The other picture is our wonderful physical therapist Robin. Heath was standing on a stool in the kitchen. One bad part of pt--they have to teach them how to climb, etc...to help their progress. Now you turn around for 30 seconds and he is on top of something. I guess I shouldn't complain!!

We were unbelievably moved to learn about the FPC Child Development Center's wonderful fundraiser for us last night. The time and effort that goes into something like that is so great--and we are so grateful for the gift.

I have had many questions about costs, so here is a little bit: The cost of medicine has been pretty shocking--even with good insurance. It has made me wonder how anyone who doesn't have insurance deals with what happened to us. Even with insurance, meds will be a several hundred dollars every 2 months (one of the meds he has to take for life costs $900 a bottle without insurance--isn't that unbelievable??) So, all that is to say--THANK YOU CDC staff and families! I can't really find the words right now.

Yesterday I traveled to Greensboro with both kids to take a look at our house (or as we lovingly call it--"our Greensboro vacation home...") and see what needed to be done. I am not sure what I thought I was going to be able to do with both kids, but I filled the car with yard stuff and cleaning supplies and a few toys and went on my way. Luckily, our angel neighbor, Daphne, found us and promptly potted the flowers I had brought and welcomed us into her home for a chick fil-a lunch picnic. I don't know what we would have done without her! We also got to see our dear friends Abby and Melissa Burris, which was so great. I hadn't realized until I was getting off the exit how I might be emotionally affected by coming back to our house and Greensboro. The last time we were there was the night that I was feeding Heath a bottle on the couch before we headed to UNC for our life to change forever. It was our first house, and one that we loved dearly. So many memories flooded back--it was tougher than I had anticipated. Everything happened so fast that we never really got a chance to miss all our friends and special places in Greensboro and Burlington until now.

We are so excited to be in Durham and especially at Westminster, but it was somewhat cathartic to just get a chance to yearn for the past for a few minutes (only minutes because I was immediately thrown in the world of ella brooks doing the pee pee dance in the middle of the garden store and realizing that I had left my house key in durham as the rain picked up, which quickly brought me back to earth...) :) I love parenting.

Ok, enough thoughts for now. I really just wanted to say thank you to our friends at cdc and embarrass my sweet boy with his dress-up outfit. "

Blessings to all.

Love, Carrie

I'll bet you're smiling!!....

Blessings,

"Gran" Sarah

March 23 Update

An update from Carrie....

So, Heath's 3-month heath cath was on Thursday (March 19). It went very well (results today show that he is NOT rejecting the heart!). In fact, we couldn't believe that we were home watching the ncaa tourney on the couch at 1 pm!! Heath's heart seems to continue to become "elastic," which means that it is pumping even better. They said that the numbers continue to go the way we want! YEAH! We were even told that we could SLIGHTLY join the world again too (no big crowds, still try to not go to the stores, etc...) We should get the results of the biopsy tomorrow. Have we ever explained the biopsy part? They do the regular cath to measure pressures in the heart, and then they take a small piece of the heart to biopsy. This biopsy can tell us in the earliest stages if Heath is having an rejection issues. Remember that there is always some rejection--it would probably be treated just with a change in medication--but knowing early, early could make a huge difference in Heath's health.
Folks have been asking when we will be able to fully join the world again. That is a tricky questions in that Heath will always be immune-suppressed. It will lessen in time, but since it is due to the medicines he is taking and will be taking, we will have to always try to watch it. I get that feeling that by a year we'll be able to get him out more.

Other than that, we're great. Chris is busy with church. Ella Brooks is loving school and church. We are looking forward to getting settled in a house of our own--other than the one we own still in Greensboro. :) We're still hoping to sell that house...but step by step. The good weather has been so fabulous for us. Heath and Ella Brooks have been enjoying the swings at our local playground. It is so great to see his grin as he swings, especially when his best girl (his sister, sometimes his mom) pushes him. He finally got a tooth and now it looks like the rest that we have been waiting for are coming too. Walking is coming--although i think it will be a few more weeks before he really feels comfortable letting go of our hands. We did finally get him some shoes--the adventure to the stride rite at southpoint was quite fun. They were fabulous about wiping everything down for germs and then measuring his feet.

Chris' installation service as pastor of Westminster is next Sunday, March 29 at 3:00 p.m. at Westminster. Dr. Ron Shive is preaching. We would love to have any friends from surrounding areas (Greensboro, Burlington) to join us along with the folks from Westminster. We'd love to see you!

Love to all. We'll try to be a little better about updating in the next couple weeks. Maybe we'll even have a picture of a new house?? :)

Many Blessings,

"Gran"Sarah