Holiday fun!

I guess there's no time like the holidays to pick back up with blogging, huh? There will be plenty to write about, that's for sure!

We certainly have started off our break from school with a bang! Rebecca planned and hosted a Christmas Sleepover for 8 of her friends. (yes, I am crazy!) They played games, ate, listened to music, ate, played hide and seek in the dark, ate, and finally went to sleep about halfway through the night (after a game of hide-and-seek at 2am!). They were up by 8:30am and ready to go again! Zach was the smart one and found refuge at Nana's house. Here are some pictures from the party...

Of course there was volleyball!

Rebecca found these cute snowman cupcakes to make (not as easy as you might think!)

These Christmas Tree Treats are made like Rice Crispy Treats

Pizza makes everyone happy!

They played Christmas Pictionary - can you guess this one?

This game is called Hedbandz and you ask yes/no questions to try to guess what your card is. Lots of fun!

Since we have some time off, we scheduled some doctor's appointments. Zach had a cleaning at the dentist. He did great except for the xrays --- those awful bitewings kept making him gag! He has always been very "gaggy" anyway. They tried putting a pinch of salt on his tongue to keep him from gagging (I've never heard of that!) and they were able to get one side done but not the other.

Rebecca had to have some cavities filled :(  They used nitrous oxide on here and she was sooooo goofy! At one point, she said in a very nasally voice (because she had the "clown nose" thing on) "I can't find my hands!". Apparently, she couldn't feel her hands - she asked her daddy if he had them! She was so funny!

Then, today, Zach had his cardiology checkup with Dr. R. It's been 6 months since he's been seen and honestly, I was very anxious. You just never know when you are going to have a curve ball thrown your way when you are dealing with CHD. We weren't really seeing anything of concern with Zach except that he has seemed more tired lately - he has been falling asleep in the car after school a lot and that is not like him. He fights sleep. Anyway, we are praising the Lord because his checkup went wonderfully!!! He weighs 39.4 lbs, he is 41 inches tall, his bp and EKG were good, his pulse ox was 98 (yay!!!) and Dr. R. said his echo looks great. He didn't even have any leakage today! His meds are all staying the same (1 baby aspirin and 4 ml Enalipril 2xday) and we go back in 6 months.

So, for the rest of the week, we are spending time with friends and family and looking forward to Christmas day. Zach's nightly devotions started in on the Christmas story tonight. It is amazing to think about all that was happening at this time of year for Mary and Joseph. I'm sure Mary was miserable, being that she was 5 days away from giving birth. I'm sure she was excited, too. What do you suppose she was thinking? I bet she was scared to death! Being a first-time mother is nerve-wracking enough but to be the mother of the Son of God? Whoa! I wonder if the angel had to keep reminding her not to be afraid? I wonder if she questioned God about whether she was ready for this or not. I just pray that I can be a faithful servant like she was, that I can find favor with God and fulfill his will.

May you find joy and peace as you worship the Baby in the manger this Christmas.

Vacation, vacation, vacation!

So far this summer, our family has been all about vacationing! To start with, we went to Nags Head, NC with my family for half a week. The weather was incredible and we had a blast!

A mean game of Jenga between my brother, Phil and me. I won!

My mom and Aunt Mable

Monkey!

Rebecca and her best friend, Sarah

You think they are a little tired???

Next, the kids went with Nana and Papa to Myrtle Beach. They had a great time too! Unfortunately, I haven't gotten any pictures from their trip yet. I will have to post them later (maybe I'll get that done before the end of summer!).
While the kiddos were at the beach, Bill and I took off in the opposite direction to Gatlinburg, TN. We rented a nice little mountain cabin and just hung out! It was a great chance to relax and eat some good food. We went out to eat a couple of times (you have to go to the Apple Barn if you are anywhere near Pigeon Forge!!) but also took some good food to cook. We ate every meal out on the deck overlooking the mountains. Check out this view!

We actually needed this little fireplace burning a couple of the mornings while we drank our morning coffee!

So now, FCA Camp season has officially started. Bill is directing a couple of camps and helping with some others. Then, at the end of the summer, he will start a new job! We are excited that he will be the Athletic Director at a local high school!

Zach had a cardiology checkup this afternoon and everything looks and sounds good. He also had his first session of speech therapy, which went well. Zach has a very strong lisp and struggles with many blended sounds. The therapist gave us some pointers for things to work on at home. We will go every Thursday afternoon for the rest of the summer.

We hope you are enjoying your summer as well!

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!

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!

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!

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!

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.

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.

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!

Cardiology checkup

Zach had a checkup with the cardiologist this morning. Dr. R is following him closely in preparation of his upcoming heart cath on April 6 at MUSC. He did another heart cath and said that everything looks as good as it can get. His leaks are the same (not worse - PTL!), murmur sounds the same, systolic function (whatever that means) is as good as a healthy heart.

I asked about Zach's weight (he was 30.3 lbs) and if we should try giving him something to supplement his diet. He is a typical preschooler in that he eats mostly chicken nuggets and mac and cheese. He likes baby carrots w/ ranch and will eat green beans with a lot of encouragement. He loves fruit. The problem is, he doesn't drink much milk and lately doesn't eat cheese except on pizza. He does like yogurt and eats 1-2 tubes of Go-Gurt a day. He said it would be ok to try some Pediasure. He just doesn't want to overdo it because he is pleased with Zach's growth thus far and proportionally, his weight measures up to his height (no pun intended). He doesn't want him to get chunky.

One thing that he said bothered me a bit --- no, a lot. He said the heart cath would help them assess whether Zach was a good candidate for the Fontan. Not sure if he meant "right now" or "ever" and I didn't think to ask at the time. So, not having the Fontan means... what? Anyone with any insight on this, please chime in and calm this mama's nerves.

The biggest blessing of our visit with Dr. R is that he prayed with us! We circled up and held hands, Zach included, and had prayer for Zach's cath, for safe travel to MUSC next month, and for wisdom for us as Zach's parents. How precious! We are so blessed to have a wonderful, Christian doctor!

Cardiology checkup

This morning, we had a checkup with Dr. Raunikar. He is so wonderful! He adores Zach and obviously loves what he does. He is very thorough and takes time to answer all our questions. We thank God for him!

If you'll recall, I talked to Dr. R. recently about Zach being out of breath, so we were a little anxious to see what this checkup would bring. Would Dr. R. see that Zach is getting "in trouble" --- that his heart function has decreased to the point that there needs to be an intervention (cath/surgery)? We have been members of this CHD family long enough to know that you must be prepared for unexpected news. It is all part of the journey, unfortunately.

I am so grateful that we are past the days of anxiety over these checkups. We still prepared Zach by talking about what they would be doing and since Zach loves to arrange "structions" in numbered lists, we told him he would have to:

Number 1: stand on the scale and see how much you weigh.

Number 2: let the nurse "hug" your arm to check your blood pressure.

Number 3: let the nurse wrap up your finger to check your oxygen saturation.

Number 4: lay down like a big boy and watch a movie while they take a look at your heart on the echo.

Number 5: talk to our buddy, Dr. Raunikar.

He was 30.1 lbs, up about 1/2 lb from his last visit not quite 2 months ago. His bp was good, heart rate was 112, and sats were 86-87. Dr. R. listened to his heart, lungs, felt his liver (an enlarged liver is a sign of heart failure), which was all normal. Zach happily chatted throughout the exam without a bit of fussing. Of course he giggled as Dr. R. pushed around on his belly to check his liver - lots of tickle-spots there!





He sent us across the hall for an echo and said that everything looks about the same as the last one. The med (enalapril) that Zach takes for his leaky valves is helping and he is increasing the dosage just a bit up to 2.0 ml 2xday.

He also sent us downstairs for a chest x-ray. We had not prepared Zach for this, so he was a bit anxious when we walked into radiology and he saw that huge machine. Daddy stayed right by his side though and he was just fine.

Dr. R saw some streakiness on the x-ray and said Zach may have some "vascular congestion" (I think that is what he called it). He is putting him on lasix for a while to see if he can "pee it off". Zach hasn't been on lasix since right after his last surgery. While he is potty trained, he does sometimes still have "ack-idents", so I am not looking forward to adding this. We plan on him wearing a pull-up for the first few days!

We go back for another chest x-ray on Feb. 23, so we'll see if his lungs look a little better and if his breathing improves. We are still on track for the heart cath April 6 and the Fontan sometime this summer.

It was a treat to see our friends who were there for their first checkup with Dr. R. They just got home from the hospital after Anna Grace's birth and first surgery. She is a cutie!

We are so thankful for Zach's continued progress, growth, and overall good health!