a sparkling summer so far

A while ago we were having a little "dance party" before bed. This is a standard in our family. You never know exactly how that dance party is going to happen though--a few months ago heath yelled "break it down" as EB was teaching Aunt Jo some ballet moves. He proceeded to run into their midst, fall on the floor and roll around as if he were BREAKDANCING...no one will claim teaching the child to break dance. hmmm...
Tonight, though, might have taken the cake. We have this little $20 target guitar that is often in the midst of the dancing. For some reason chris was playing it tonight. I was in the other room, and suddenly I heard Heath yell--in his very loud, deep voice--"JESUS! JESUS! JESUS!" I stopped short and said, "um, chris, what is he..." and then heard it again, more clearly, "JESUS!" I ran into the room to see Chris in hysterics on the floor and Heath dancing, with a BIBLE in his hands, singing/yelling, "JESUS!" I am not sure i even have a comment about this. unbelievable.

and there we are. that is how we roll. you never know what is going to happen next in this crazy household. but, we're all healthy and we've been able to really enjoy our summer since heath's hospitalization.

we were able to still go to black mountain for the 4th. we had such a wonderful visit with chris' family and so many of our very best friends! it was so great to be able to laugh with friends and watch our children enjoy playing together.

we came back for a few days and uncle jamie came home from haiti. we had a quick, fun visit from nana and her dear friend (and ours!), fran. And then, we headed to nags head to spend most of a week with my family on my dad's side--aunts, uncles, cousins--so many of us! the kids had so much fun together with "the cousins" as Eb and heath have been calling all of them. They played in the water, dug huge holes and hung out on the wonderful porch. it was a really great vacation. Chris and i have finally realized that "vacation" just means something a bit different with young children. we'll sleep one day.

hmmm...what else? heath's health is good. we're enjoying getting back into the swing of regular home time. if it wasn't so crazy hot, we'd be working on some house projects (chris does NOT love my desire to do so many house projects).
we were the speakers at a fundraiser at duke children's hospital last saturday, which was so moving. it was a group of bikers who also work with walmart's transportation division in hope mills. 250, yes, that is a correct number, bikes came up the road, parked in a parking deck, ate texas roadhouse food (they delivered it from fayetteville too), and then formed a huge line to bring in all of the toys that they were also donating (along with tons of money). i spoke to the group--of 350 people--in the lobby of the children's health center. it was so moving to look up and see people lining the balconies of 3 floors. and, we were reminded again of all that duke has meant to us. we are so grateful to be in a place where we can begin to give back by doing some of these events.

I am tired. I told chris i was coming up to bed an hour ago. This crazy blog will only let me put up 5 pictures at a time, so I have put up 2 more posts of our summer adventures. Here is wishing each of you a little "sparkle" and a whole lot of laughs with family and friends. i know it has been good medicine for us.
love, carrie

sparklers on the 4th of july.

a drum on the head. yes, we're a fun crew.

fun at the beach with family and a gathering with family and friends with uncle jamie before he went back to haiti.

a little too much fun with a $20 guitar, family and friends (having a good evening while uncle jamie was home), and a hilarious song about, well, krispy kreme cheerwine doughnuts. we sure do know how to have a fun night...

more fun family time at nags head--looking at a rainbow, playing with pops, and with all the "cousins" at jockey's ridge. nothing like good family time!

summer vacation pics

Heath surveying the landscape at jockey's ridge in nags head, nc.










rock hopping with papa













paddle boating with the family in lake susan.







a wonderful visit with Bop. Chris' grandfather will be 98 in about 3 weeks!!

Sparklers on the 4th! What fun!

home again

hi dear friends.

i am going to only write quickly to let you know that we are home from the hospital--as of about 3:45 this afternoon. heath had still not been drinking and we were pretty unsure about even wanting to go home, but we realized when we finally took him out for a walk around in his stroller that he would eat if he wasn't in his room. it was as if he had fallen into what I have heard called a "hospital lull" where you can't quite feel better because you just sit and sit and look at the walls of your room. the doctors had already suspected as much and they were willing to let us take him home. he stills feels really stinky and only wants to sit on me (which was lovely, oh when he first started feeling bad LAST WEEK), but he is actually reaching for his sippy cup and asked for mac and cheese. SO, we'll take that as a good sign that we are on the mend. sarah and pat are staying here to help out, which is great.

i will write more and do a little reflecting when i am not quite so exhausted. right now, the only other thing i want to ask for are prayers for our dear sweet friend, olivia. she had surgery on thursday at duke, strangely, and we visited in the picu briefly. then, i walked out of our room yesterday to realize that they were OUR NEXT DOOR NEIGHBORS. after all the time we spent as roommates in the picu in the early days of both of them on ECMO (and they are 4 days apart in age), we have been through so much together. what a crazy coincidence. we decided that the next time we see each other it should be at a park in western nc!!!! olivia had a liver biopsy and her gall bladder removed. she is recovering well, and the initial look on the liver seems to be that it is a better case scenario. she still has some tough recovery, though, so please say a prayer for her and her family.

on that note, my friends, good night. i have a feeling it won't be a silent night in this house, but i am so grateful to sleep in my own bed, no matter how long it is.

hospital day 2...

and we're still there. well, chris is there and i am home with eb and pat, who arrived fresh (t(to a very freshly disinfected house--thanks mom!) from black mountain a few hours ago. goodness, i missed my sweet girl this week.

the good news: Heath's heart is fine! We had an echo early today to confirm that there was no heart issue surrounding this virus. everything looked good.

the more frustrating news: heath tuttle is a pretty stubborn sucker. i am reminded by everyone that that is, in fact, why he is alive. he has decided that (this is my observation, at least) a. his throat really hurts and he doesn't want to drink and
b. he is too tired to eat or drink and
c. he said NO! (that is his main word followed by whatever you want him to do i.e. "NO DRINK!"

most days i am grateful for this stubborn streak. today, i am wishing he would relent a bit. he just still is getting hydrated by the iv fluids and he really doesn't have much energy. and he is getting better, just slowly. but this mama wants him to be better NOW! I am also reminded that dehydration is something that can be FIXED, so we really do know that it is going to be ok--just hard to watch your child hurting and not be able to do anything about it.

chris just called and said that heath was eating a ROUND CRACKER (this is a ritz, his favorite) and was still mostly a "no guy" but was at least had a bit more energy. aunt sarah (who stayed with him so we could have some eb time--thanks) said that she thought his vocabulary was growing a bit more than "no" since this morning. :) those of you who know my little fella pretty well would really be shocked to see how little energy he has--but you would not be surprised that he was ready to tell me pretty clearly where he wanted me to put a popsicle i was trying desperately to make him eat this afternoon. :)

we are hoping that we might take him home tomorrow afternoon. i am not going to count on it until i see him drink a bit more. he has to pee his own pee (i.e. off fluids for a while) before that happens. we shall see.

we continue to be so grateful for the love and support from near and far. it brings tears to my eyes as i write this. it makes it a bit easier to get through hard days when you know there are people praying all over. thank you.
i am not surprised, but i am also reminded as i walk through the halls at duke and have staff come over to visit us from other areas that we are so incredibly blessed to be in a hospital like it. what an amazing group of people we have caring for us. i stand in awe.

on that note, i promised everyone that i would get some sleep tonight. it has been a long week.
hope you do too!
hopefully even more positive news tomorrow.

back in the hospital...

I realized that many of you may have heard that heath was sick and not know much else, so i am doing a quick blog update--and will do more later. i am home taking a shower after a night in the hospital with heath. he is doing much better.

back story--on sunday morning he woke up with a fever. there is a virus (or a couple we now know) going around right now, so it made sense that he had picked it up now that we are more "out in the world." at first he still seemed ok so we thought it would just run its course. by day 4 he was not eating or drinking much of anything, was throwing up here and there and was pretty lethargic. but he would rally each night a bit and we would think he was turning a corner. finally, yesterday afternoon, we made the decision, with our wonderful pedatrician, to take him to the ED at duke to get some fluids. we were told to plan to stay overnight so they could monitor him.
turns out he was really dehydrated. and, he has some weird strain (I say weird because i can't pronounce it) of hand, foot and mouth disease. he only has the fever and throat ulcers, though. he has been a pretty sick dude, but we're hoping with fluids he will start bouncing back pretty quickly. this morning he was ASKING for a sip of the drink we had for him, which was great. AND, he had enough energy to do his "almost done" repeating thing in a very mad voice the whole time they were doing his vitals, which was also a good sign.

SO, they have to run the regular tests that they run on heart transplant kids who get sick as well as the regular tests that they run on kids who have this virus, and hopefully we'll be home this afternoon or tomorrow. we shall see.

chris is getting ready to pull into the hospital. he has been in decatur all week doing his last 2-week dmin class. eb has been spending the week with mimi and papa and at clubs at montreat, so she luckily had a great time and didn't have to deal with the sickness of the week. mom, strow and sarah have been wonderful caregivers. whew.

i will write more later today with details. thanks so much for your prayers.
love, carrie

good tired...

AND HERE WE ARE--Hands on hips...observing the chimps in the rain...looking very "in charge..." that is my guy.

We had quite a memorial day weekend! Mimi (Pat--chris' mom) was here. Grandpa strow came over and fixed up a swingset that a friend had given us all day on Saturday (will post a pic of this soon too). On Sunday evening we went to a Bulls game with friends and family (i will post a picture of this soon--hilarious). On Monday we went to the zoo and met our good friends, the Oedys, for a rain-filled zoo extravaganza--complete with an hour or so
in the chimp "house" during a pretty heavy storm. We went straight from the zoo to be with some of Chris' family in Hillsborough for a memorial day cook-out--so delicious and so much fun. wow. we were tired, but a really "good tired." we were feeling so full--of love for family and friends, of excitement for being able to get out into the world. good tired.

it has been so much fun to watch heath enjoy getting to be in the world. he loves it--well, he loves pretty much everything except for being separated from mom and dad (who also have had a few chances to sneak off to join the world too!). we got so excited about joining the world in the last few weeks that I think we almost did a little too much. we're trying to settle back down a little. may was a busy month! i certainly won't complain too much about that, though.

aside from our comings and goings--really good health news! we had an appointment at duke for a regular cardiac transplant clinic check-up. Heath had a grand time with "doctor boni" (dr. carboni, the cardiologist who will follow him throughout the years). I was glad that they got to see him pretty "normal" (he was full of himself). We were able to get him through the echo without being sedated--i must say it may have been thanks to the max and ruby dvd that i brought and the attention of 3 wonderful nurses and mommy lying next to him in the bed--whatever it takes. He also barely cried during his blood draw. I was so relieved. We had all been dreading those two parts. The results--all looks good! They are really thrilled with his continued progress. We were told that there isn't much of anything he can't do now--other than continuing to stay away from sick people (he is always going to be immune suppressed). step by step.

so, i think we'll plan to be "good tired" for a long time. he's a busy, healthy guy.

blessings to you all.

carrie