Cutest Blog on the Block

Saturday, December 25, 2010

Merry Christmas!!!

From our family to yours...
Have a blessed Christmas and Happy New Year!

Friday, December 10, 2010

Prayers needed for a heart baby

Please lift up Mason, his mom, Neysa, and his dad, Todd. Mason was rushed by private jet to MUSC last night and may still be in surgery right now. You can read about his battle here.

Sunday, December 5, 2010

An Update and Some Important Dates

Merry Christmas!!! I can't believe it is already December! I have a good start on my Christmas shopping - how about you?

We finished up most of our decorating last weekend, despite most of us being sick. Zach hung the first ornament on the tree, gave Daddy a huge hug and said "It's Christmas Time!!!" So cute! He hung maybe 2 more ornaments and lost interest. Oh, well. They say their attention span about equals their age in minutes, so that's about par for the course!



Ta-da!

Here's our hearth decor, which Zach has destroyed for the most part. He thinks it's all for him to play with.

Rebecca with her best friend, Sarah, in front of Rebecca's new Christmas tree she put up in her room

We just need to put out our reindeer, snowman, and lighted trees out front. It has been cold and/or rainy this week, so we haven't been able to do it yet. We also need to take our Christmas picture so I can get our Christmas cards ready to go out.

We have a couple of important dates on our calendar. First, Zach has a speech evaluation on Jan. 4. He talks with quite a lisp still and is not saying a lot of blended sounds. We'll just have to see what they say.

Also, Zach will have a heart cath done March 17 at MUSC. They need to close the fenestration that they created during the Fontan and I suppose they will have a look around to make sure everything is working well, too. Even though I dread going through another procedure, at least we know what to expect from Zach. We pray we will not have any surprises.

Monday, November 29, 2010

The Funky Heart

Steve Catoe, aka The Funky Heart. A heart warrior. A hero in our CHD community. An inspiration to moms and dads of Cardiac Kids. A blogger who researched and shared important information about this disease we are all fighting. A devoted advocate in the fight against CHDs.

Steve passed away last night. I don't know any details. I just know that we will all miss Steve so much.

Please pray for his family during this difficult time.

Saturday, November 27, 2010

Mystery Bug - Be Gone!!!

We really thought Zach was on the mend after my last post but he started coughing more and more on Thursday --- and had a fever over 102 Thursday evening. We called and talked to the answering service and the doctor advised that if we could not get his fever down to take him into the ER. Fortunately, we were able to get it down with Tylenol. Daddy slept with Zach in the recliner so he could be sitting up more.

Friday morning we were on the phone at 8am and got an early appointment. The doctor we saw always seems to listen more aggressively to their lungs than any of the other doctors --- he had helped Rebecca last Fall when she had allergies with a cough that would not quit. We may switch and start seeing him regularly. Anyway, he could hear something going on in Zach's left lung and bronchial area. They tested for RSV (another nose swab) and tested for walking pnumonia (another finger stick) but they were both negative. Nonetheless, he prescribed Azithromax, a steroid, and breathing treatments (he cleared this with our cardiologist first).

Coughing MORE is not Zach's idea of getting better --- unfortunately that is exactly what these meds are doing. Helping him get the gunk up and out. Bless his heart, he could not get to sleep for coughing last night. We tried him sleeping in our room. He had coughing fit after coughing fit so daddy took him to the recliner. Still more coughing fits. Did I mention that each coughing fit results in Zach gagging and sometimes hurling? So, Mommy slept on the couch next to the recliner so she could help manage cleanup. Not a fun night.

Oh, and did I mention that now I have a sinus cold??? Sigh.

Despite my whining, we do have so much to be thankful for. God is so good and I am trying to keep an attitude of gratitude. First, I have to go blow my nose.

We are getting ready to get all the Christmas decor down from the attic. Zach keeps asking when we are going to put up the tree, so maybe the excitement will help him feel better. Pictures later of our progress...

Tuesday, November 23, 2010

Good News - Bad News

The Good News: Zach's cardiology checkup was great! He was 31.5 lbs, 39" tall, pulse ox 93, bp good, and echo good. Dr. R. said his heart looks great! His fenestration (a hole they made during surgery that acts as a "pop-off valve" ) is still open, so Dr. R. is putting in the request to Charleston for a heart cath in March. They will place a coil to close it and have a look around to make sure all is well.

The best part of the appointment was when Dr. R. said "We are going to stop the Lasix." Woo hoo!!! I am so glad to get rid of that. In case you don't know, Lasix is a diruetic. Diruetics and preschoolers do not go well together. Basically, when we give it to him, we have to stay home for the next 2 hours so he can go tee-tee every 15-20 minutes. Trying to get a 4 year old to stop playing every 15 minutes to go potty results in lots of complaints. Dealing with accidents during this 2 hour period has been frustrating. Hopefully, he will do well off of it and we can be lasix-free from now on!

The Bad News: We thought Zach was on the mend, but he spiked a fever again this afternoon. He also has a bit of a cough. Daddy promptly called and got an appointment at the pediatrician. They tested for strep (negative), flu (negative), AND pricked his finger (white count normal). Poor guy! They are culturing the blood and strep swab.

So, we are not sure what is going on. All I know is that this little bug that's causing him to feel so bad has overstayed its welcome. We have places to be and people to see and TURKEY to eat!

Hope your Thanksgiving is full of blessings!

Sunday, November 21, 2010

Thanksgiving Festivities... unless the sickies have invaded

Bill got to go to Zach's preschool on Thursday for their Thanksgiving dinner and program. Zach's class sang "Every Turkey Can Tango" and acted out the story of the pilgrims and the Indians on the first Thanksgiving. They had a great time!

Here's the place setting that each child made














Zach (the one with his shirt pulled up!) is showing off how thankful he is to be a CHD Survivor














Look at all the desserts!















This morning before church, Zach did not want his breakfast. This has become more and more common on school mornings and we often take it in the car with us for him to eat on the way. Toward the end of children's church, he started acting like he didn't feel good and sure enough, after we got home, he started running a fever. His tummy has been a little upset, too. Please pray that this is just one of those short-lived bugs.

While I'm on the subject, can anyone recommend a really good thermometer? I bought a temple-read thermometer from Walgreen's but it doesn't seem to be reliable --- I can take his temp several times and get several different results. I know he has a fever because I can feel that he's hot. I just like to keep tabs on how high it is.

Some other prayer requests for our family...
  • Zach goes to the cardiologist on Tuesday for a checkup.
  • Zach has an assessment, also on Tuesday, for his TEFRA (Medicaid) to see if he still qualifies for benefits. I am nervous about this because we could be denied and have to go through the appeal process. Anyone have experience with this? I don't know if it differs from state to state?
  • We are supposed to travel to have Thanksgiving with Bill's family if everyone is well, so please pray for good health.

We are thankful for your faithful prayers!

Monday, November 8, 2010

Good Ole Fashioned Fun

Did you ever do this as a child?

















There's nothing like a simple cardboard box, big or small, to entertain a child, big or small, for hours on end... My two children actually played together in this box (yes, it's in the middle of our living room!) for about 30 minutes without any fussing or fighting! I think that might be a record!

Saturday, October 30, 2010

Snips and snails and puppy dog tails... and WORMS!

THIS is what little boys are made of...


For their Halloween party yesterday, Zach's VERY wonderful, VERY brave preschool teacher, Mrs. Amy filled their table (that is usually filled with beans or rice or sand or occasionally water) with potting soil and WORMS! LIVE ONES! EWWWWW!!! The little boys in the class LOVED it! The girls squealed!

video



Of course, Zach wouldn't have anything to do with wearing his costume to school for the party --- a Clemson football uniform (CarolinaCarters, I know you'll love that!). We put on his camo sweats in the hopes that he would look like a hunter or an army man. Maybe he'll actually wear his costume for Halloween?

Wednesday, October 27, 2010

Prayer request

Please be in prayer for some good friends of ours --- The Williamsons --- whose 3 year old son, Brice will have heart surgery Thursday morning at 7:30am in Atlanta. They recently found that he has some extra tissue near a valve inside his heart. Please pray for everything to go smoothly, for pain management for Brice, and for peace and comfort for his mom and dad, Shane and Angel.

You can follow him tomorrow at http://www.caringbridge.org/visit/shanewilliamson --- feel free to leave them some words of encouragement.

Thank you for your faithful prayers!

Sunday, October 24, 2010

It's a slippery slope...

Every once in a while, my mind wanders into some dangerous territory and I allow myself to dwell on certain questions that haunt me...

"Will kids pick on Zach as he gets older because of his health condition?"
"Will he 'fit in' when he is a teenager?"
"Will he be physically able to participate in PE?"
"Will he be physically able to play on a sports team when he is older?"
"Will he have to have more surgery?"
"What will Zach's life be like as an adult with CHD?"
"Will he be sickly?"
"Will he be able to work or will he have to go on disabilty?"

Once I allow them into my mind, these questions won't leave me alone. They peck around inside my head and bring me down. When I allow myself to ponder these things... when I open that door just a crack, more negative thoughts and more questions force their way in. I find that once I start thinking, I cannot stop. The negative thoughts take root in my mind and grow like an aggressive vine, wrapping chutes around every positive thought... smothering... choking. These thoughts lead down a very dark path.


These are the things I must turn to when my mind gets carried away.

Truth is what I need to dwell on when I start down that slippery slope. Truth uproots that deadly vine. Truth shines light into dark places. The Truth is that Zach has done incredibly well in his 4 1/2 years despite his medical diagnosis. There is no reason to believe that he won't be able to do whatever he sets his mind to. 
"Then you will know the truth, and the truth will set you free." John 8:32

Faith forces me to change my focus from these worldly troubles and "turn my eyes upon Jesus." Jesus is Zach's Great Physician. Jesus is Sovereign. Jesus has a plan for Zach's life and will equip him and us to live it to the fullest. If we have Faith.
"He replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm." Matthew 8:26


Hope keeps out those negative thoughts and searing questions. Hope allows us to dream big for our Little Heart. Hope reminds us that awareness and advocacy lead to research and research leads to improved healthcare for CHDers and improved healthcare leads to a better life.
Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

 
Truth, Faith, and Hope cause me to turn from the negative and seek the positive... to turn from what the devil would have me focus on to the abundant life that Jesus intends. For Zach's sake.

What helps you fight off the questions that haunt you?

Sunday, October 17, 2010

Craziness...

It has been so long since I have posted! I miss blogging. I miss recording all the funny things Rebecca and Zach do and say. I have still been reading up on all of our Heart Buddies, but I haven't had time to sit down and write, nevermind taking and downloading pictures! Bad, bad Mommy!

This new way of life feels like craziness! I am exhausted --- do working moms ever get enough rest? Our evenings are filled with fixing dinner picking up dinner somewhere, doing laundry, helping with homework (btw, is it my imagination, or is 7th grade homework harder now than when I was in 7th grade?), making lunches for the next day, ironing clothes for the next day, bathing one little wild man (thankfully, Bec can take care of all that for herself!), and hopefully getting to bed at a decent hour. Whew! Then it all starts over again the next morning!

I do love what I'm doing, though. I have a great faculty and administration to work with. I feel like I am accomplishing a lot, although there is still so much to do! This week will be extra exciting --- we are having a Book Fair! It ought to be interesting!!!

And Zach continues to LOVE 4K. He is learning so much! It's fun to hear him share the songs they sang at "'cool to-day" (gotta work on those S's!). He is learning about his letters and the sounds they make. Friday they made chocolate chip cookies. This week, they go on another field trip - this time to the pumpkin patch!

Health-wise, Zach is doing wonderfully. He goes to the dentist Tuesday. Hopefully he will let them really clean his teeth this time. He's not crazy about them doing things to him. I wonder where that comes from??? He's not gonna like it but he's gonna get his flu shot Tuesday too. He doesn't go back to the cardiologist until sometime in November.

Friday night, we attended a reunion of the 1990 Union High School State Championship team. Bill got to reminisce with coaches and players. Zach and Rebecca got to run and play in the end zone with the other kids.

FCA ministers to coaches wives through a group called Bench Backers. So Saturday, we went to an annual picnic with a bunch of coaches and their families. We have it at this beautiful horse farm - the wonderful owners allow the kids to ride horses, take everyone on a hayride, and have a bonfire for roasting marshmallows.

The only way Zach was having anything to do with horse back riding was to get Daddy up there with him. I asked him why he didn't want to ride the horse and he said "I fink he gonna frow me off!"





This year they had a special treat for us - Redneck Sledding! Lots of fun!








Look at that smile!
The big kids playing football --- that's Rebecca the Running Back on the right.
The hayride wagon

Hopefully it won't be another month before I post again. Just know that we're not MIA --- we're still here!

Saturday, September 18, 2010

Living Proof...

Here's living proof that the Fontan Completion does indeed give the CHD survivor MORE energy...

video

Hurricane Zach wreaking havoc on the Owens household

...which just may lead to this...
Zach knocked out on the floor of the hallway outside his bedroom

One thing's for sure, being at work all day sure does make it difficult to get important things done, like grocery shopping, going to doctor's appointments, and blogging! It's a good thing that Bill and I work so well together as a team to get everything taken care of... except the blogging. Sorry it's been so long since our last update!

Zach continues to do well in preschool. He was so excited the other day because he got to be the teacher's helper for the day. He got to help carry her clipboard and hand out pencil boxes. He has been learning a lot about the letters A, B, H, Z, W and has been singing lots of new songs that they have learned. This week on Tuesday he goes back to cardio for a checkup and on Wednesday, he will go to the apple farm with his class! We are so thankful to God that he is doing well!

Rebecca only has a couple of weeks left in her volleyball season --- she will get to start in Monday's match. She has fallen in love with the game and I hope to get some good pictures of her in action.

I am loving my job! I still have a lot of work to do to get my library organized, though. I am trying not to get frustrated and impatient. I know it will take a while, and all the hard work will be so worth it!

Tuesday, August 31, 2010

Celebrate!

Just a quick update to let everyone know that...

Zach is no longer on a fat-free diet... AND the doctor released Zach from all activity restrictions which means he can finally enjoy the playground at preschool! Hooray!


I have to admit that the fat-free diet hasn't been all bad. I think I have lost a little weight without even trying! The problem is, so has Zach!

Bill sent me the picture below today after Zach's marathon cardiology visit (x-ray AND echo, and all the other usual stuff). As they were headed to Zach's preschool, Zach asked if they could stop at Zaxby's. Dad told him they were not open. Zach thought about it a second and said, "OK, we can go to Chick-a lay!"

See the box of Chick Fil A chicken nuggets? See Zach's BIG smile?


This is one happy boy with a good lookin' Heart Zipper!

Sunday, August 29, 2010

Prayers needed...

What a privilege it is to pray for our fellow heart families...

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

And the prayer offered in faith will make the sick person well; the Lord will raise him up. James 5:15

Two more cardiac kids are going to make their appearance very soon.  That means that two more families will jump onto this CHD rollercoaster. Two more families will be turned upside down, twisting and turning, going up and down, just wishing they could stop it all. We veteran heart families have two more chances to lift up prayer for those who will feel overwhelmed as we once did.

The first, Mason, who was diagnosed en utero with Tetrology of Fallot (TOF), was actually due Saturday. Mason's mom will be going to the OB Monday. They could possibly decide to induce, although she does not want that. Please pray for discernment for her doctors as they decide what will be best for him, for a smooth delivery, and for Mason to be stable.

I heard about this second family during an interview on the radio. A member of the Christian group Sanctus Real is about to have his third child, Bowen, who was diagnosed en utero with Hypoplastic Left Heart Syndrome (HLHS). Bowen is due to come in the next couple of weeks I think.

Also, please pray for us as Zach goes back to the cardiologist on Tuesday morning. He will have a chest x-ray to make sure there is no accumulation of fluid left over from surgery. The doctor will let us know if Zach can begin to eat fatty foods again. Zach will be soooooo happy to go get some Chick-Fil-A nuggets! We are also praying that Zach will get rid of the cough that he has had since last week.

Thank you prayer warriors!

Monday, August 23, 2010

Every Heart Has a Story...

Today my good friend and fellow heart mom, Stef, shown below, is hosting a linking blogging thingy. Not sure what to call it, but it is a great way for heart families to connect and share their heart journeys. It is also a great way to spread awareness of the #1 birth defect in our country - Congenital Heart Defects.

Every Heart Has a Story


Every heart is different but one thing's for sure... Every heart has a story! For us, we were "adopted" into this world of CHD's.


Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...


Our family a few hours after Zach's birth --- before we knew there was a problem...

Click here to visit and read the rest of this earlier post telling Zach's heart story...


Now, in August of 2010, I am proud to announce that we are post-Fontan and Zach is doing great! He is an amazing boy who is full of life and smiles for everyone he meets. He has started preschool and is learning new things every day. We are blessed.

Sunday, August 22, 2010

Alarm Clocks, 4K, and Sniffles

So, I am finally getting around to blogging about our first day of school. It's been a very hectic week, but a good one!

On Sunday, my sweet family gave me a framed collage to put on my desk. Every time I look at it I feel so loved!

We got Zach an alarm clock to help him get up and get ready for school. We hoped it would help him be excited about getting up at 6am (he's never had to get up early for anything except an occasional early doctor's appointment) and we hoped it would help him to sleep in his room all night rather than coming into our room as he now does every night. So, on Sunday night we set the alarm and put it on his dresser. Lo, and behold, he comes into our room at 2am carrying the alarm clock! Stinker!!!


Monday morning at 5am my alarm clock woke me from a deep sleep. Like Zach, I am not used to having to get up super early, or at least not used to having to be ready and out the door at 6:45am! I have about a 20 minute drive and have to drop Zach off too and be at school by 7:30. Zach wanted to know why it was still dark outside!














\
Here we all are ready for our first day of school! Despite the look on Zach's face he really was awake and in a good mood. A few minutes later he started fussing. Do you see what Zach has in his hand? Cardiac Kid's Breakfast of Champions --- Enalipril!!

Zach did really well going to preschool all week. Bill was able to pick him up after lunch on the first day but he had to stay for pretty much full days for the rest of the week. I was afraid he would be wailing every day but he fussed very little and really seemed to have a good time. He is learning a lot already!

Apparently he hasn't learned to avoid the kids with the snotty noses (heart mom humor!) because he has a little cold. Yesterday we hovered around the tissue box, wiping his little nose every 2 minutes. Today he sounds a little stuffy. Nonetheless, he has felt good and been his usual self. I know sickness is inevitable and I am thankful this hasn't developled into something bad.

 













So, I guess we will get up and do it all over again starting tomorrow morning!

Tuesday, August 17, 2010

New member of the cardiac kid club...

Please lift up some big prayers for the newest member of the cardiac kid club --- baby Joshua, born yesterday with HLHS. He and his family have just hopped on this rollercoaster that we veterans know so well. Right now, he is stable and they are praising God for all the little victories. Check out how he's doing at http://fierceandfiesty.blogspot.com/.

I will post about our first day of school soon... hopefully before mid-semester!

Thursday, August 12, 2010

Bok! Bok bok bok BOK!

You might be wondering about the title of the post. Click below...



The question is...

Just how many ways can you fix chicken???!!!


























Hopefully, we only have a couple more weeks on the low fat diet (PTL), but I declare... I cannot wait to go get a big, juicy, dripping cheeseburger! Wherever we go to get that big burger, I'm sure when we ask Zach what he wants to eat, he will say, "Chicken!"

Zach loves to tell everyone, "I am on a fat-free diet!" like it's something to be proud of. Not easy to explain to complete strangers in the grocery store or to the poor girl at Chick Fil A that took our order today (he can eat 1/2 of a grilled chicken sandwich from CFA --- he cannot eat his favorite 6-pack of nuggets). And I'm pretty sure that Zach is the only 4 year old who reads nutrition labels. The other night we were having a snack and I was reading the label on a couple of boxes from the pantry. He said, "Lemme see." He turned the box around to the label and said, "OK, two grams of fat!" Funny Boy!



So, praise the Lord, Zach continues to do well. He still gets tired but we are at that point where an afternoon nap keeps him up at night, so we just deal with a grumpy boy at night and try to get him to bed earlier. We have been trying to adjust his schedule to get him used to getting up early and going to bed early because he starts preschool Monday! He will just go for 1/2 day for a few days this week to allow him to build some more endurance. I am nervous about dropping him off this week and pray that it goes smoothly. We have not been used to getting up and having to be much of anywhere early in the morning so this is a big deal!

Rebecca has been in try-outs for volleyball at her school this week. There are 40 girls trying out for 12-15 spots! We hope she makes it --- I might be biased but I think she is pretty good! I think she is all ready for school --- in middle school a girl's gotta have just the right school supplies and clothes!

Bill has been busy following up from summer FCA camps and gearing up for the new school year. Football season is always busy for him --- lots of ministry opportunities. Zach has been glued to Daddy's side these past few weeks, so we hope we can un-glue him (Zach, I mean) on Monday.

I worked the first three days this week getting my library ready for the start of school. I love the folks that I work with and am really excited! I felt like our kids on their first day of school --- Bill just had to take a picture of me all ready for my first day of work! Notice the sleepy look in my eye and the large mug of coffee?



Thanks for checking in on us!

Tuesday, August 3, 2010

Cardiology checkup

Zach's cardiology appointment went well today... except for the part about holding him down to remove... you guessed it --- THE BANDAID!!! The good news is that Dr. Raunikar said that we do not need to keep a bandaid on it anymore. Hallelujah!!!

He weighs 30.3 lbs, is 37.5 inches tall, good bp, good pulse ox at 90-92, EKG and echo looked good. He left him on the same doses of aspirin and enalipril and reduced his lasix to one time a day (Yay!!!). The poor kid gets a lot of exercise running back and forth to the potty after taking that lasix!

The doctor said he can start preschool when school starts but he cannot climb on the outdoor play equipment. I will have to check to see if they can accomodate him in that way. The other issue is that he is still on the fat-free diet until the end of the month, so we will have to provide all his food. You can imagine that this "hovering heart mom" is having a hard time with trusting that someone else will protect him from collisions, climbing, and fat-laden food. I also have to compile a list of symptoms for the preschool staff to look for in order to educate them about his condition. Fortunately, he will be at a preschool about 2 minutes away from my school.

Rebecca will be trying out for volleyball at her school next week. She loves the sport and is pretty good at it, so we are hopeful that she will make the team.

Speaking of school, I can't believe its almost here!!! I have been in my first-year-teacher class this week and will be officially starting next week. I am feeling overwhelmed and anxious but I am really excited to begin this new adventure! We welcome your prayers as we make these adjustments within our family.

Tuesday, July 27, 2010

Stuck...

Remember this?



Well, that's the problem. The Band-aid's stuck on Zach.

How is it possible that open heart surgery is a piece of cake compared to changing the bandages on Zach's chest tube incisions? Do you know how hard it is to hold down a screaming 4-year-old --- without hurting him, mind you (I mean we are only 2 weeks post-op) --- and peel off a little-bitty Band-aid? And can it possibly hurt that bad?!!

OK, now I feel a little better. Please share your experiences with this and what to do about it.

Friday, July 23, 2010

Is it possible?

Can Zach, a.k.a. Flint Lockwood, really be back to normal already? Only 11 days after open heart surgery? He is feeling great (not even taking Tylenol!), sleeping great, and eating great (despite the Fat Free Diet). The only time he feels any pain is if he has to cough or sneeze (just the thought of it makes me cringe). Incredible! I shouldn't be surprised, really. Not with all the prayers that have been lifted up to The Great Physician.

video
Zach and Daddy laying in the bounce house playing with his bouquet of balloons that our good friends sent him.

Zach had a great visit with the cardiologist this morning. Zach was funny this morning as we headed downstairs for his x-ray. Daddy pointed down the hall and told him we were going to Radiology. Zach said, "No Dad, we hafta go to X-RAY!" When the doctor came in, the first thing Zach said was "I'm on a diet!" Great report: nothing of concern on the chest x-ray, sats were great at 92-94, blood pressure just where it oughtta be. We go back in 2 weeks for another chest x-ray. So now that I don't have anything to worry about heart-wise, I am worried about all these x-rays. Aye-aye-aye --- the life of a heart mom!

I talked to the dietician from MUSC for a little more guidance with our diet. We are VERY limited, but I think I have a good menu planned. I just hope Mr. Picky can hold out for another 5.5 weeks!

So, we are looking forward to a very restful weekend at home. Hopefully next week we will feel like getting out a little at a time. After all, we gotta go see Toy Story 3!

Wednesday, July 21, 2010

Now, Dorothy, close your eyes and repeat after me...

There's no place like home.
There's no place like home.
There's no place like home.

There really is no place like home. We got in this evening after swinging by to pick up Rebecca. With all 4 of us under one roof, Zach likes to say, "We are a family!"

Now we can get down to some REAL recovery!

Thank you all for your prayers and encouraging comments --- they carried us through!

Please help carry another heart buddy through. Sam is having the Fontan (the same surgery Zach just had) at MUSC tomorrow morning (Thursday). Please lift him and his family up.

If you'll excuse me, I'm going to sleep in MY bed!

Tuesday, July 20, 2010

Tubeless and fancy free!

I can't believe it!!! NO MORE TUBES!!! They just removed the 2 remaining chest tubes and Zach is sitting up in bed eating his lunch! Hallelujah!!! We have to hang out until sometime tomorrow to make sure there is no fluid accumulating (they will do another chest xray and echo at some point). If all is well, we will be packing up to go home tomorrow! I keep reminding myself... Don't count your chickens until they are hatched.

In the meantime, here's a video I shot of Zach this morning. Just to prove how good he's been feeling.

video

Monday, July 19, 2010

A Day in Pictures...

After getting over his initial grumpiness, our day ended up being pretty good. We had some visitors --- so sweet of my good friend and fellow librarian, Susan and her son William to come and visit while they were down visiting family. We also spent some time with our new friends Debby and Melissa. We are so blessed!

Here are a few pictures from today.

 
In the bed but still in constant motion!


The Atrium is a wonderful place!! We were able to go 3 times today. Zach ought to sleep well tonight!

A beautiful view of the city from the Atrium

Playing a little Wii --- he's either concentrating REALLY hard or very tired. Maybe both!

Cheers!

Dad's idea of a turkey sandwich. I don't think you are supposed to put the WHOLE turkey on there, Dad!

Now for some REAL food (well, fat-free cafeteria food instead of plastic food)! I think Zach finally has his appetite back!

THE WALL

We have hit the wall. 7 days of people messing with Flint Lockwood and he's had enough. When I asked him about going to the playroom, he said "No, I want to go home." Blood Pressure? NO WAY! Temperature? NO! NO! NO! Medicine? FORGET IT! GO AWAY!

Thank you for your prayers. Please pray for cooperation from the boy. He needs to get up so we can get the drainage to go down some more. It has leveled off. He still has some fluid around his lungs, too so pray he can pee it off.

As Dorothy says, "There's no place like home... there's no place like home..."

Sunday, July 18, 2010

Still hangin' out in 7C

Zach is doing so much better as you can see! Saturday morning he still wasn't feeling good at all (hence the prayer request for a "movement"). Praises! He had some success on the potty that alleviated his discomfort for the time being. We got to go to the playroom twice yesterday and took a walk in the hall last night. This morning he went to the playroom for about 45 minutes and did great. We are headed back to the playroom at 2pm. One of his favorite things to do is to doctor on the babies.















They said his chest x-ray still shows some fluid around one lung so they want to leave the chest tubes in until at least tomorrow. He will have another x-ray in the morning. It is just a waiting game.

Zach likes to "mess" with the doctors and nurses, so he says, "I not Zach. I Flint Lockwood." (from Cloudy with a Chance of Meatballs. If you haven't seen it, get it. It's a cute movie) So one of his nurses put his name on the door and printed out a picture of Flint. Funny Boy!!!















In the meantime, we refer often to our roadmap back home. Just before surgery, I checked out The Wizard of Oz and Zach fell in love with it. I ended up buying it and he has watched it about 100 times. When we were in ICU, they suggested making a chart to help Zach to cooperate a little bit more. I started drawing this roadmap that would help Zach see all that we need to do to get back home. You can sing it, "Follow the Yellow Brick Road!"















We have been so blessed by all the notes, emails, and calls. Thank you for your encouragement and support. God is so good and His Holy Spirit has truly been here to comfort and strengthen us. Please continue to pray for Zach to be able to eat (this fat-free diet is tricky) so he can regain some strength, for pain management, for the drainage to taper off, to stay free of any infection, and to be able to go potty again (not necessarily in that order!)