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

Nana's Visit

Sam's daycare closes for one week each year to re-carpet, repaint, and bleach EVERYTHING. My mom came up to watch Sam for us. I'm relatively sure she was in heaven. We got to sleep in, catch up on a movie, and 'train' for our upcoming 5K run. Sam, on the other hand, got spoiled.

Sam HAD been sleeping totally though the night. If he DID wake up, he would fall back asleep within a few minutes without us going up to him. When my mom was here, if Sam made a peep at night she would rush in to spoil him with an extra bottle and attention! I am a little worried about how that might switch up his schedule. BUT on the flip side, she did teach him to eat! He just wouldn't eat for us, and would pitch a fit if we tried to feed him solids. She was really persistent with him and now he bottoms out a jar of baby food in minutes! I'm really happy about that!

Sam will miss the one on one attention from Nana. And Chris and I will miss sleeping in. Sigh.

~Kathy

First Fourth...and First Tooth!

Sam has been quite busy recently. He has sprouted his first tooth! We noticed it last weekend while we were in Mobile. Today I noticed his second tooth (both on the bottom front)has started showing, too. He has also (FINALLY) started to sit up. He can hold himself up for a few seconds before falling to one side or another. He had his first bath in a tub (since he has pretty much outgrown his sink tub)! He still needs help holding himself up but he LOVES to kick the water around.

My parents come over for the weekend and the Fourth of July. Sam got plenty of attention and Chris and I got to catch up on our movie back log. Sam missed our 'big' fireworks, but he got to see some sparklers, which he loved! My mom is staying for the week and Sam will get plenty of Nana time. Chris and I will get a chance to go running together, see a few movies, maybe go out to eat, and I have an hour massage scheduled for Thursday...ahhh so nice.

~Kathy

Sam Has a Girlfriend!

We drove to Mobile on Thursday for my dear friend Kathryn's wedding. When I picked Sam up, his teacher told me he has a girl friend! Apparently a little girl who is a few weeks younger than Sam was playing with his toes. Then a few minutes later they were holding hands! Adorable!

Kathryn's wedding was great! Sam came to the ceremony and a few minutes of the reception. He got to meet our friend's baby, Charlie. He JUST missed meeting his future wife, Shannon. Both babies are just a few months old, and Sam looks like a grown man next to them! Fun was had by all, and even though it was super hot, it was a wonderful ceremony and perfect reception.

I would be writing more detail but my mind is too busy. Just recently, I have been reminded over and over how lucky Chris and I are to have Sam, heart defect and all. I have had two people in my extended circle of acquaintances who have lost perfectly healthy babies in the 9th month of pregnancy. Today, a Hypoplastic LEFT Heart baby that I have been keeping up with died suddenly. I don't know how you go back to living your life after such losses. I don't think I would have been strong enough. When the doctor gave us a 50/50 chance for Sam just before he was rushed to Atlanta by ambulance, I told Chris I would die if Sam died...and I meant it. I can't stop thinking about these families and how they are supposed to go on...how do they go back to work, how do they come home to a house full of baby toys, how do they get out of bed? Having a chronically ill baby is NOTHING compared to losing a baby, and I've been close enough to know the difference and to feel just a fraction of the pain they must be feeling. We are SO blessed to have Sam. Even with a rough future ahead, I KNOW we are the luckiest people alive to have him with us. Chris and I feel like we KNOW this...other people with healthy kids THINK they know they are lucky or blessed. We KNOW because we have been to the edge and back. Please say a prayer for these families and families who have been through similar experiences.

~Kathy

Father's Day and 6 Month Shots

Chris had a good First Father's Day (as far as I can tell, anyway)! Sam and I made him his requested breakfast: cinnamon rolls and a tomato basil omelet. We bought peg board and tool holders to complete (or almost complete) Chris's work station in the garage. I have to admit it looks pretty good, and clears out some much needed shelf space!

Sam went to the pediatrician for his 6 month check up. He weights 17lbs 10oz (30%), is 27 inches long ( 55%), and has a head circumference of 17.5 inches (60%). She said he looks great! I asked her about the need for therapy and she thinks he is doing just fine, and doesn't need anything at this time. We also asked her about this chronic cough. She doesn't have any experience with Lisinopril side effects, so she wants us to ask our cardiologist. She said his lungs are clear though, and said if the Lisinopril isn't the culprit, that we can try a prescription antihistamine (in case this is allergies). We'll see what Dr. Cardis thinks. I actually thought the cough was getting better last week but all the sudden last night it came back with a vengeance. Needless to say, Chris and I were very tired this morning.

Sam also got his 6 month shots. It was tragic. He survived though, and hopefully we won't have the fever like we did last time.

Exciting news: A Publix store is opening TOMORROW right across the street from our neighborhood. We can't wait.

Sad news: I doubt I will make it to Kathryn's Bridesmaid Brunch, rehearsal, or After Rehearsal Dinner. I worked a couple of weekends, and knew I should get compensated a weekday off of work. I guess I requested the date too late, and now they can't find coverage (someone to take my patients for the day). I'm super sad. And once again it will be a whirlwind weekend in Mobile where we drive in just long enough to NOT get to see anyone and then drive right back to Georgia. I was also looking forward to taking a day off of work for something OTHER than a Sam Episode. The wedding should be great though...I hope my dress still fits...

~Kathy