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

March 4 Update

Greetings folks! Here is an update from Carrie...

Tuttles are hanging in there, really doing quite well. Ella Brooks decided at 4:30 this morning that it was "time to go downstairs and have breakfast" and was completely WIDE AWAKE, which was thrilling, especially since Heath was finally SLEEPING!

Heath's next heart cath/biopsy was scheduled for March 19, and after that, if all goes well, we won't have another one for six months, I think. That is pretty exciting.

He is doing incredibly well--"talking" (he makes VERY loud noises that sound like words and definitely is saying momma, dada, baby and a few other things). He is climbing stairs and walking with only a little help for balance. He is all boy--the other day he looked at my mom, smiled and tumbled head first out of a chair. She caught him and yelled "this child is fearless!" to me in the other room. He is so busy. Of course my child with the heart transplant would be the one who throws caution to the wind...He still doesn't have any teeth, but we keep thinking that they're just right there waiting to pop out. This isn't unusual because we discovered that I didn't have teeth until 13 months either. He had his year old check up yesterday (yes, we actually did this...which felt very funny after all that we've been through, but it was very helpful) and is completely on track with growth and development. I just can't believe it after all that has happened in the last four months to him.

I sent you a couple pictures--Heath and EB on the stairs, I hope she'll forgive me for the shirtless pics in public when she's older, but it was her idea! Heath trying to walk--he looks so proud of himself. AND, Heath in the cupboard in the bathroom. We were laughing about what lengths we are going to find interesting things to do while being hold up in the house together!

The rest of us are also doing well. Ella Brooks had a little skin infection that has been pretty uncomfortable for her, but she is doing better and is off right now with her "boyfriend" (teasing)Andrew and his wonderful mom Jennifer Feiler who takes her somewhere fun every Wednesday morning. She is very "three" right now, but is really doing a great job being a big sister and with being in the house so much. We take drives to look at houses and get little snacks. She is a good sport.

We are still hoping to sell our house in Greensboro after the first contract fell through. We have some great house possibilities here in Durham--which is exciting to think about getting settled in our own house. Chris is enjoying really getting into a rhythm at Westminster, and we're enjoying getting to know people so much more.

Other than that, we're hanging in here, and looking forward to the weather getting nicer so we can get out of the house.

We are so grateful again for all your well wishes--and thoughts and prayers and assistance. The months that Westminster folks have fed us have been so appreciated--and delicious. It really made it possible for us to get through these last few months. We were so moved to hear about the spaghetti dinner that the CDC at First Burlington is doing for us on March 25. It made me stop in my tracks and cry--and thank God for such wonderful friends we have made over the years. We miss you all!

Ok, that is enough for now. i will try to send more updates as we go.
love, carrie

Blessings,

"Gran" Sarah

Good Monday Update

I had a great conversation with Carrie today. She had gone for a drive with the children in order to get out of the house a bit-but as you know she really can't go in to any stores with Heath! So, it's their way of getting out of the house without the germ exposure!

Ella Brooks is feeling much better and is fully recovered from her tummy bug. As they were riding in the car, EB was lecturing her brother on sharing the one toy he had in his hand with his sister!! Quite the "in-charge" girl!

Carrie said they are doing really well. Chris took Heath to his regularly scheduled doctor's appointment last Thursday and got a great report. In fact, the report was so good that Heath's next appt. is not until April 2! He will probably be scheduled for a routine heart cath. sometime in April but for now, all seems to be nice and steady.

Heath's physical therapist is thrilled with his progress. Carrie said he is one busy, active one-year old! Yeah!

Still no word on a sale for their house in Greensboro but they are hopeful to have a buyer soon. They would love to find a permanent home in the Durham area and begin to be part of a neighborhood soon! Carrie said she had found that sometimes waiting is the only solution-difficult when you are a planner!

That's the good news for now....

Blessings,
"Gran" Sarah

Uh-Oh- Tummy Bug!

Carrie emailed me this afternoon and especially asked for prayers for the Warren family in the loss of their 7 year old son, Luke, this past Sunday morning. The Warrens were at Duke at the same time the Tuttles were, both children in the PICU, and the families became very close friends. Sadly, Carrie went to the visitation last night to see the family.

As Carrie was leaving the very difficult visitation, she received a call from her mother, "Ama". "Ama" reported that Ella Brooks was not feeling well and was crying and asking for mommy. It turns out that Ella Brooks now has a stomach bug. For most families, that would not be cause for great concern. However, that means that Chris and Heath are now quarantined at "Ama's" house while Carrie is quarantined at home with Ella Brooks! Carrie proclaims, "Never a dull moment in the Tuttle house!". This is one time they hope that Ella Brooks does NOT share with her brother!

So please continue to keep the Tuttles in your prayers as they deal with this latest bump in the road. Once again, the Tuttles covet your prayers for the Warren family as they deal with the devastating loss of their sweet son.

Many blessings,
"Gran" Sarah

An Interesting New Routine!

Here's the latest from Carrie....

"Nothing too exciting going on with us today. We're learning that the "not too exciting" is the best for us these days. Chris and Ella Brooks just went to the Valentine's Dance that is sponsored by the youth of Westminster Pres. They had MUCH fun. Apparently Ella Brooks has no interest in dancing at the dance, but she boogied on the way home telling Chris to "you dance, too, Daddy. Put more hips into it." (mind you, he is driving, she is 3 and very bossy!) That's my girl! Heath got to be my sweet valentine at home.

As I was getting the meds ready while the other members of my house were "dancing," I remembered that I said that I would email you a little description of our medications since folks had been asking questions about how much/when, etc...Heath is a fabulous medicine-taker, by the way. We are extremely grateful because he is on a TON of meds right now. He takes most of them 2 times a day, one 3 times a day and one 4 times a day.

He is on two immune suppressing meds--cellcept and FK506/tacrolimus. These are meds used also for chemo. He will probably be on some form of these two for the rest of his life. Then, he has to take magnesium because the FK leeches magnesium from the body. He is on a heavy duty version of prilosec because all the medications are bad for the tummy. He has 2 blood pressure medications--amlodipine and enalapril. He takes predisolone (steroids), a general sulfa antibiotic, iron, a heavy duty antibiotic called valgancyclovir that is still fighting the cmv (hopefully will go away soon), nystatin (for thrush caused by the antibiotics). I think that is it. I did that by memory. I am not sure if that is fabulous or really sad. :)

Ella Brooks likes to help me get all the medications set out once a day. She likes to line up all the bottles and shake them up for me. For some reason, she calls them "her children" and I have decided not to ask too many questions about that right now. I sent you a picture of us doing the meds together--Ah, mother/daughter bonding. She made up a song about "antlodipine" and the other day we were pretending that we were driving on a trip and first she said we were going to "Sulfatrim (antibiotic)" before going to Haiti to "have a drink" with Uncle Jamie and Australia to see Aunt Deanna and Uncle David. The 3-year-old imagination is amazing to me. Her ability to just add the medications to her life routine is also impressive.

Ok, that is what I've got for you today! Heath doesn't actually have an appointment at Duke again until Thursday, which is his longest stretch so far- step by step! Chris is actually going away on his staff retreat for a couple days at the beginning of the week. Life goes on."

Blessings,

"Gran" Sarah

Thursday Update from Carrie

Here's the latest from the Tuttles...

"The Tuttles are doing fairly well. We have spent the day navigating appointments at the hospital in the midst of the Mix 101.5 Duke Children's Hospital radio-thon right in the clinic lobby. The stories were so moving--and it felt so weird to hear them after all we've been through at Duke.

The sale of our house fell through, unfortunately, with a problem with the buyer's loan. That was sad, but we had some other interest so we're hoping that we'll find another buyer SOON. We had just gotten excited about looking at houses here in Durham!

On a much more fun note, Heath is motoring all around. He is starting to really find his balance and loves to try to walk around the house using only our hands to keep him upright. It is such a joy to watch the smile on his face as he feels independent. I will try to send a picture of this soon. He loves to take a bath--especially if his big sister is in there too. He just loves Ella Brooks. They like to hold hands in the back seat of the car. Once again, the little things make all the difference these days.

More soon, but that is where we are now."

Please continue to pray for the Tuttles as they face the challenges and joys of each day.

Blessings,
"Gran" Sarah

Weekend Update from Carrie

I received a great update from Carrie...

"The Tuttle family has been pretty busy in the last week--between celebrating birthdays, going to doctor's appointments and actually getting out of the house a bit! Today was Chris' birthday--we had a great time celebrating with a walk in the gorgeous weather at Duke Gardens. It was so much more crowded than it has been in the past few weeks! We even ran into our friends Chuck and Dana Campbell, which was so nice.

Chris' parents came in for the weekend to celebrate and also to hang out with the kids so we could actually go on Friday night to his staff Christmas party (yes, in the church is often a great idea to get together as a staff well before or after Christmas...my First Pres. Burlington staff friends know that all too well. These folks didn't have quite the difficulty with the date planning, though. :) We had such a great time! then, we actually went on a date to celebrate our birthdays on Saturday evening too! I managed to have a little time to go to breakfast and shopping with my mom on Saturday morning too. Needless to say, I don't know what to do with myself. We were so grateful for help from Sarah and Robert and Pat and Bob to make this happen.

Heath is doing pretty well. We are trying desperately to settle into some sort of routine. We're having to take one day at a time, as we have always been told that we would. As a planner, this is tough for me to do sometimes, but I am working at it. We had an appointment on Thursday and the blood work showed too much acidity. Here comes the viscious cycle of the medications (which I will write about later this week as some folks have shown interest in knowing more about these). He has to be on these medications to fend off his body's rejection of the heart, but it makes his stomach not feel too great sometimes. And then he is on a few to fix the problems that the other medications cause. and now he has to drink this awful tasting stuff (bi-carb) for the acidity/dehydration issue, but it makes him not want to eat or drink anything else which can make him more dehydrated... AH, never a dull moment in the Tuttle house. We spent much of Saturday trying to be creative about what we could mix this one medicine with to make him drink it (I can only imagine some of your suggestions...)! We're going back tomorrow again to see what his numbers look like. Lots of doctors appointments, but we're so glad to be home and drive TO the hospital for appointments! All in all, he is really doing well. He is crawling and cruising and standing up a bit. The physical therapist is thrilled with his progress too. He is just a happy, pretty chilled out guy.

On another fun note, we have a contract on our house in Greensboro! We are thrilled that if all goes well with inspection/closing, etc...we can start looking for a permanent Tuttle home in Durham. YEAH!

As always, we are so very grateful for all the love and support that we have received from you all. We wouldn't have made it this far through this without your love and prayers. Please forgive us for not being the best communicators right now. With being home with two busy kiddos and all the extra stuff that comes with Heath's continued care and Chris being at work full-time now, we haven't had as much time to return phone calls and emails.

Blessings and Peace to you all.

Love, Carrie"

With continued gratefulness,

"Gran" Sarah