Summer... almost!

The kids are out of school now! I am so looking forward to a schedule that is not packed so our family can enjoy spending time together.

I have to work on Tuesday :( and then we head to the beach! My side of the family is going to Nags Head this year --- there will be about 30 people there at various times throughout the week. It's always a blast --- crazy, but a blast!

Last Monday afternoon, Zach started running a fever. Once we got his fever down, he acted fine. Tuesday, he stayed home with Daddy and he ran no fever so we thought he was ok until 5pm when it started again. I took a look at his throat, which looked like he had 2 red-hot fireballs (you know the hot candies?) stuck back there. When I saw that, Zach did tell me that "his tongue hurt". The child hardly ever complains! I declare that he does not feel pain the way other children do, with all that he's been through. Anyway, I took him in on Wed. mornint and the dr. said his throat looked "impressive" but the strep test came back negative. She decided to treat him with an antibiotic anyway because the strep test is only about 90% accurate. He seems to be back to his old self again and was able to finish out the week at school.

So now, as a reward for taking such good care of Zach, I am the one suffering with a sore throat and now a "like-a-faucet-runny-nose" and sneezing. UUUGGGHHH! I woke up at 5:30am and could not go back to sleep. I kept trying to sneeze but could never get it out. My eyes are watering and watering. Please pray with me that everyone else can stay healthy for our beach trip.

Also, I have a couple of other prayer requests... Our neighbors, Jo and Al, have a new grandbaby. They knew something was not right all during the pregnancy but the possible diagnosis changed with each doctor's visit. He was born on Thursday, and they know he will have surgery sometime because his esophagus and stomach do not meet. I do not even know his name yet, but you can pray for Carter and Amy, his mom and dad. Many of you with heart babies know how they are feeling right now.

Also, please pray for Emma and her family, who go to church with my mom. I think Emma has the same heart defect as Zach and she had surgery on Thursday. I do not know any other details yet but will update when I know more.

Hope you have a blessed Memorial Day Weekend! We have so much to be thankful for in our country and we owe so much to those that made the ultimate sacrifice for our freedom and those who are serving us at this moment. Remember them this weekend!

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.

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!

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!

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!

Bumped

We got home from our pre-op checkup with our cardiologist this morning to find a message on our machine from MUSC. I thought, "Maybe they just want to confirm everything...". No such luck.

We have been bumped.

They are having to clear the whole schedule next week so they can take care of some emergency cases. My heart goes out to those families. I hadn't ever thought about the fact that we were once one of those emergency cases (when Zach was 3 weeks old and registered a 65 on the pulse oximeter - yikes!) and may have caused some other family the heartache of having to rearrange their schedule. The woman I spoke to indicated that we might not be rescheduled until the end of the month.

I have been so bummed out all day. I know I shouldn't feel this way. I know that God is in control. We have so much to be thankful for... but most do not know how hard it is to prepare for your child's heart surgery. You get yourself all psyched up and ready to get it over with and behind you. You prepare yourself mentally (thinking about what to expect), physically (making arrangements for siblings, planning what to pack), and spiritually (sending out prayer requests). You stay cooped up, avoiding germs. You...

Ooooohhh! Hold on... Phone call from MUSC!

Hallelujah! Our new date is Monday, July 12. I can handle that. We will have to be there for pre-op on Friday, July 9, which is a bit inconvenient since we will be 4 hours from home, but I'm not complaining. Oh, thank you Lord!!!

Thank you for your prayers for Zach as we prepare! Continue to pray for all of us to stay healthy and for Dr. Bradley and his team.

Zach and Daddy wrestling/snuggling on Father's Day

Prayer request for Anna Grace

I don't think I've mentioned lately that I am so thankful for this faithful community of heart families! I love how we can come together to pray, encourage, share, educate, laugh, and cry together. One of the family is in an all too familiar place right now...

Please pray for The Bentley family today while little Anna Grace is in surgery right now for her Glenn. Everything is going well so far. Please pray for Dr. Bradley and his team.

She was born at MUSC 6 months ago, had her first surgery there before coming home at 1 month old. How fresh those memories are for her mom and dad, making it all the harder to hand her over this morning. She did well (thanks to versed!).

You can follow their updates during their stay at http://baasheepbaa.blogspot.com/  Leave them a note to let them know that they are being lifted up to The Great Physician.

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!