Sam's Icky week

Census is low at my work right now, so we are rotating PTs and OTs having a day off during the week. My day off was Tuesday. Sam and I stayed home from work and school and got all kinds of things done. When I took Sam back to school on Wednesday, there was a sign on his classroom door that said "ROTOVIRUS CONFIRMED IN THIS ROOM"....oh joy. But I thought maybe he'd be alright since I had kept him home on Tuesday, and maybe he'd missed the initial spread of the bug. However, as I discovered, rotovirus has a two day latency...he had actually picked it up on Monday and by Wednesday mid day he was showing symptoms.

I picked him up from school with a fever of 101 and he did throw up a few times that day. He had a low fever and diarrhea for the rest of the week. Chris stayed home with him Thursday and Friday. He woke up a much happier boy today! But still...in Sam's 9 months of life he has had two fevers and one bout of bloody stool...pretty good record, I think.

On an unrelated note, ALWAYS question your medical bills. We have discovered that literally ALL the medical bills we have received since Sam's birth have been in error in some form or fashion. If we had just paid them, we would have paid about $10000 in unnecessary payments. This past week I did A LOT of work going through hundreds of insurance EOBs and found huge errors. If they had been smaller and fewer bills we probably would have just paid them. But when you get $4000 bills, you naturally tend to question their accuracy! Long story short, we owe nothing.

On another unrelated note, I have become a master diaper cake maker. They are great baby gifts, and super adorable! I'll post some photos when I finish handing out the three that I still have sitting on my counter.

~Kathy

In Honor of Sam

We received information about an event to benefit Children's Healthcare of Atlanta (the hospital where Sam had his surgery). It is called the CVS Strong Legs Run, and all money goes to benefit this hospital system, which is world class in children's oncology, neonatal care, transplants, and CARDIAC SERVICES! Chris and I decided right away to participate in honor of Sam.

The event is a 10K run/walk, 5K run/walk, 2K family run/walk, All Kids Can Race 75 yard dash (disabled children only), and a Mascot Trot (for all children, who will get to race popular college/business mascots). Basically there is something for all. The event is on November 14 (Saturday) at Turner Field in Atlanta.

We are participating on the Cardiac Services team (Team Strong Hearts), and 100% of the money from our registration and any donations we receive will go straight to the Cardiac Research team at Children's Hospital...these are the people who SAVED SAM'S LIFE and who will give him new life again when the time comes for his next surgery.

We are hoping to get a lot of friends and family involved in this. How can you get involved, you say? Well here are two ways:

1. Run/walk with us! Go to the link below and register for any of the events. Strollers are welcome! Everyone gets a long sleeve t-shirt for participating, and kids who race in the two kids races get finisher ribbons and tshirts. When you join, BE SURE TO JOIN THE STRONG HEARTS TEAM so that your money can go to Cardiac Services!! Once on the Strong Hearts team, if you earn an ADDITIONAL 50$ in donations, you will get a Strong Hearts Team t-shirt!

2. DONATE! If you can't be there with us but still want to support Sam's hospital, you can send a general donation. You can either donate on my web page (listed below) or send us a check.

If you can come and race with us, there may be a bonus for you: We are hoping to organize a 'tailgate' at Turner Field for after/during the races to celebrate with family and friends!

We're really excited to participate in this race (we're going to do the 10K) and help out this seriously amazing hospital, and in particular the cardiac services department. These people save babies and kids every day, and are constantly researching new approaches to help extend the lives these children. They already saved Sam once. We are praying that their research will give Sam a chance at the full live expectancy that all of us take for granted. Every dollar really will make a difference!

Contact me if you have any questions!!
My Donation Page
CVS Strong Legs Run Page
Children's Hospital of Atlanta Race Info Page

Another Eventful Weekend

We had another travel weekend. This time we went to Mobile for the wedding of a friend of ours from high school. Chris had flown to Houston during the week for business, so my mom, Amanda, Sam, and I drove to Mobile on Friday. We got in late, and then I had to go pick up Chris, who flew into Pensacola from Houston. Randomly Chris met up with a friend of ours from grade school in the airport, and we drove him home from P'cola, too. It was a nice surprise, although I wish I had been more awake to have a better conversation...it was 2am when we finally got back to Mobile.

Saturday was Matt Shelby's wedding. It was at the Explorium in Mobile, which is a great place to have a wedding if you have a lot of kids present...or a lot of adults who act like kids. We had such a good time playing in the Explorium, and it was so nice to hang out with friends we have had since 4th grade! The wedding was super sweet, the reception was too much fun, and to top it off, we took the after party to Mobile's newest night club...a dueling piano bar! Sam was present for the wedding and then went home with Chris's mom. But he had a great time meeting our friends...he even loved up on my friend Angela, whose purple dress he was particularly drawn to! A little LSU fan, I guess!

We also went to meet our friend Catherine and Thomas's new baby boy, Thomas Michael. He is so freakin' adorable, and so small! He weighs 8lbs, and yet looks so tea tiny. I can't believe Sam was ever that small! Sam got to meet little Thomas, and his big sister Addie. Addie, who is 14 months, waved at Sam, and Sam hugged on her little leg like he was totally in love! Adorable...

A prayer request: There are a ton of things and people to pray for right now, and it's hard to give you just one. But in particular, my friend from high school and her husband are pregnant with a baby girl who has a trisomy condition. They have been told she will not survive outside of her mommy. They are having a tough time reconciling with this, as anyone would. I think and pray for them everyday. We talked a bit tonight, and like she said, sometimes it is hard to know what to pray for. But Chris and I learned the value of prayer with Sam. There were times when I didn't feel like praying, and times when my mind was too busy to pray. It was in those times when I was comforted to know that there were other people doing the praying when I simply could not. Say a prayer for them and their baby girl, so that when they are too disheartened to do so themselves, they too can know someone else is getting the prayers said!

~Kathy

An Interesting Friday and Redeeming Weekend

Last Friday, around 4 am, Sam woke up crying. He rarely wakes up crying, so I went to check on him. He had a dirty diarrhea diaper, and I guess it burned his little butt cheek a little. I changed him, got him a bottle, and he happily went back to sleep. When he got up in the morning, I went to change him again. He was dirty again, but this time there was a hint of blood in the diaper. Chris and I debated what to do, since I knew the daycare would NEVER keep him with diarrhea, especially with blood present. 5 min later, Sam made another diaper. This time it was MOSTLY blood. We freaked out.

We called the doctor, but the office was closed. Their nurse answering service took our information and determined it wasn't an emergency but that he would need to be seen ASAP. She confirmed my two fears: this could be resultant from Sam's aspirin therapy, or a bacteria like C. Diff. The latter runs rampant at my hospital on occasion and I would probably quit my job out of guilt if it is C. Diff.

We got an appointment and took him to the Pedi. She said that since he is eating fine, sleeping fine, acting fine, and was happy, it is probably a milk protein allergy. I find this hard to believe. She wants us to switch to soy formula for a while. She also sent us to the main hospital to get a stool sample cultured, so that we can rule out the C. Diff. Sam acted fine the rest of the day, although he still had the diarrhea with the occasional blood spot. We tried the soy...Sam's not a fan. We also decided to narrow his food choices down a bit, just in case it is one of those that is upsetting his tummy. I will let you know the results of the culture when I get them!

As a side note, we saw a horrible wreck right in front of the Pedi's office. Chris called 911 while I jumped out and stopped one of the ladies from getting up and walking around. The whole thing happened right in front of a Chiropractors office (Chris thought that was great) and the Chiropractor stopped the other lady from moving around. We talked later, after the emergency people took over. He was a nice guy. I'm not a fan of Chiropractors but I may keep him in mind if I have back problems with my next pregnancy like I did with Sam.

After being cleared by the Pedi, we continued with our plans to go camping with my family at Lake Martin in Alabama. This was Sam's first camping trip. I was really worried about it being too hot for him, but it stayed cloudy and cool the whole time. Sam swam in the lake and played with his aunt and uncle. He didn't sleep in the tent with Chris and I though, since we were still worried about it being too hot. He slept on his own queen size bed in my parent's air conditioned pop-up tent trailer. He saw ducks, watched the boats in the little lagoon right at our campsite, and took a hike in his back pack. Of course, everyone who saw him told us how adorable he was!

He had a great time camping, and then capped off a nice weekend by cutting another tooth! He cried and cried and cried last night. It was so horrible. Now I wonder if all the diarrhea and stomach upset from Friday had to do with the tooth. Add to that the fact that this 20 lb baby takes half a baby aspirin (when full grown adults take one whole baby aspirin), and I wonder if just a tiny upset may have caused his intestines to bleed a little. Who knows. I just hope the culture is clear!

~Kathy

Great Weekend

We had a great weekend! We drove to Birmingham to see Chris's cousin, Josh. Josh has battled cancer in various places over the last two years. He had half his lung removed on Thursday. They came to visit Sam in Atlanta when he had his surgery, so Sam HAD to go visit Josh! I didn't bring him the first day we went to visit, since Sam still has this cough from the Lisinopril...I didn't want to bring a kid with a cough into a room with a guy who just lost half a lung. But we brought Sam in today and Josh and his wife seemed glad we did. Sam has gotten to the stranger anxiety phase, but wasn't at all scared of Josh or Kimberly. They both held him, and until he got fussy because he was hungry, he had a great time. Josh was discharged shortly after we left, and is home recovering. We are so happy for him and his wife!

While we were in the 'Ham, we stayed at Chris's sister's house. Sam had a great time with his aunt, uncle, and cousins. Russell kept saying how much he loved Sam. He also mentioned that he wished baby Noah had the same name as baby Sam so he wouldn't have to remember two names. Kim and Jason watched Sam while Chris and I visited Josh and toured downtown B'ham. Even if it's just for a few minutes, it is nice to have time to ourselves. But we always miss our Sammers.

When we left B'ham today, we stopped and had lunch with some of my PT school classmates. Most of them hadn't met Sam yet, so it was fun to introduce everyone. They are seriously some of the coolest people I know. Everyone is doing great with their jobs, getting married, buying houses...it was wonderful to catch up. I really miss them and being with them...I guess when you spend at least 8 hours a day, everyday, for three years, you tend to get attached. I'm crossing my fingers for an Alabama/LSU football game reunion tailgate this year...

~Kathy

Cardio Appointment

Sam had his cardiologist appointment today. It has been two months, and we had a lot of questions that needed answering. Chris took him to the appointment. He said he was mostly good for everyone and cooperated with the EKG and such. Here are the results of the appointment:

1. Sam's heart sounds good, his lungs are clear, his oxygen saturation is within expected limits, and all in all he is doing remarkably well.

2. Sam's cough, which has lasted since his surgery in March, may truly be a result of his blood pressure medicine (which he started after his surgery). Dr. Cardis said that the medicine is really just 'sprinkles on the ice cream' when it comes to pediatric cardiac meds....as in you don't really need it necessarily. SO he took us off of the medicine to see if the cough stops. GREAT news for us...I hate giving him adult medicine.

3. Sam has been cleared for circumcision. Barbaric, I know, but it actually reduces infection risk in the long run and the fewer infections kids with chronic illnesses have, the better. We will have to go to Atlanta to see a specialist because of Sam's heart, but Dr. Cardis agreed it was time to go ahead and start that process. We had to hold off originally because they didn't want it too close to his first heart surgery as it is an infection risk while healing.

4. Sam's next heart surgery could be pushed back until he is 10! Dr. Cardis says Sam is doing so good and staying so stable that we will hold off as long as possible. Of course, we will play everything by ear and just take one day at a time. But Dr. Cardis's theory is that the longer we wait, the more time we give Sam to live. Once the next surgery is completed, 'the clock starts ticking' to when Sam goes into heart failure and needs a transplant. The down side to this is that we are adding more years to the amount of time that Sam's body (especially his brain) is exposed to low blood oxygen levels. I did some research and there are studies that show kids with heart conditions have increased risk of ADHD and similar learning disabilities, but there are some that show there is no correlation. Only time will tell. I would rather have Sam alive longer than have him be a genius.

5. Vacations officially just be came more complicated. We were planning a vacation to California in December. While there, we were planning on staying at my Grandmother's house in the mountains (approx. 6000 feet elevation). Dr. Cardis said all of that is fine...HOWEVER we would have to have supplemental oxygen. He said the airline will provide oxygen for the plane, but while in the upper elevation we would need to bring oxygen with us. UGH. Sam HATES the nasal cannula thing and the thought of dragging around oxygen tanks freaks me out. We will do whatever it takes though, because we really want to go and I don't want to keep Sam from experiencing things because of this condition. But I have to explain that this makes me incredibly sad about future vacations. My best memories as a kid were camping in Colorado, Utah, and California, usually at REALLY high elevations. I wanted to share that with Chris and Sam. Now it looks like we will have to avoid these places all together. On top of that, how do you recharge portable oxygen units in a campground?!? Chris didn't get really specific with Dr. Cardis, and there is potential that these restrictions are just until he gets through his next surgery. But still, I am really sad about the thought of not sharing the best parts of my childhood with Sam during his childhood.

All in all the appointment went well, and we are happy with Sam's progress and health. In other news, we joined a few heart groups, including a program run through the Egleston Hospital Cardiac Services team. Through them we were asked to send a photo for a casting call! Everyone keep their fingers crossed...Sam might be part of a PSA commercial for congenital heart defects to be filmed soon! I got an email back from the film people who said he was a 'cutie' and they would be contacting us as soon as they had details!

~Kathy

5Ks and Such

Chris and I just finished a 5K in downtown Macon. Yes, I know...running in the south in July...we're crazy. The weather actually wasn't bad at all, and was probably the coolest day we have had in a LONG time. We walked a couple of tenths but ran (slowly) the rest. Two great girls from my work ran, too. The one in the middle (Stephanie) is leaving to Arizona soon, and I am going to miss her terribly. She's my team OT and she is the best OT I have worked with while at the rehab hospital. Or ever, actually.

Sam stayed at our neighbor's house. He was so funny when we dropped him off. You can tell he is starting to recognize faces as either familiar or not familiar, and he was staring down my neighbor like she had two heads. But apparently after we left he played and flirted with their beautiful granddaughter, drank a full bottle, and fell right to sleep. When we picked him up he was knocked out, and he woke up on the walk back to the house. I thought for sure he'd be up for a while but he fell right back to sleep when I laid him down! What a good kid.

For all those runners, joggers, and non-athletic-philanthropic peoples out there, I want you to know about a run coming up on November 14. CVS pharmacy is hosting a 10K, 5K, 2K family run, and 100 yard dash for kids all to benefit Egelston Hospital (the hospital in Atlanta that saved Sam). We are recruiting people to run, walk, or donate money. All the money we raise will go to the Cardiac Services team, who truly gave Sam a second chance at life. When I get more info, I will post it. I want to get people to run or walk with us...it should be lots of fun for a great cause.

Now...off to my celebratory McDonalds fries!

~Kathy