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

Pool Time!

The last time we were in Mobile, my mom bought Sam a baby pool. We finally got a chance to blow it up and use it today! Sam was a little apprehensive at first but he loved it in the end. He's getting so much better at holding his head and shoulders up, and we noticed today that he is really getting to where he can support himself momentarily in a sitting position.

One of Sam's teachers said she felt like Sam was behind with his motor skills. I knew this, but it felt kind of harsh to hear it come from a relative stranger. She thinks (in her non-medical opinion) that he may need therapy. I personally don't think we are at the point of needing therapy yet. I think he lost a month of development around his surgery, and I'm sure he'll catch up. He has a pediatrician appointment coming up so we'll see what she thinks.

Sam still has a cough. He's had it for about 8 weeks now. We discovered that his blood pressure medicine (lisinopril) has a side effect...a cough!! And he's been on the lisinopril for about 8 weeks. We'll see what the pediatrician thinks on this one too, and maybe we can change his meds and nip this thing for good!

Sam has found his voice. He LOVES to make a super high pitch squeal (like when you pinch a balloon opening). He especially loves to do this in the middle of church! He has also started to laugh a lot more. He laughs at Chris mostly...he's definitely a Daddy's boy.

On an unrelated note, I'm tired of lugging Sam's baby fat around. Not HIS baby fat, but the fat he left on me after he was born. I started Weight Watchers. My sister in law is having great success with it so I thought I'd give it a try. I looked at a few gyms in the area but they are WAY too expensive and I really don't have time. When Sam gets older and I feel more comfortable leaving him in the gym daycares, maybe I'll get a membership. For now, kickboxing videos and Weight Watchers will have to do.

~Kathy

Funeral

Chris and I drove BACK to Mobile (the third time in 12 days) yesterday. We woke up early this morning to attend my grandfather (Daniel Scully)'s funeral. My mother's siblings and their children came in town and got to hang out with Sam before we made it home. I think Sam had a good time in Mobile without Chris and me. I'm relatively sure we didn't cross his mind once...

The funeral was very very nice. I didn't expect so many people to show up, and Deacon Pryor did a great job with the homily. An honor guard met us at the cemetery. I totally thought it would be just a bunch of punk ROTC high school kids but it was the cutest group of little old men! They did a great job and really topped off a wonderful ceremony for a wonderful man.

The drive back to Macon wasn't too bad...Sam was the best he's been so far! I'm only awake now because I have no pants clean for work tomorrow, and I'm waiting on the washer to stop! The photos are of Sam hanging out with friends/family over the last couple of days.

~Kathy

Good and Bad

We drove back to Mobile on Friday to attend a birthday/anniversary/graduation party for Chris's brother and parents. Sam did great on the drive but got a little too much stimulation too late in the night once we got in town and it took us a while to get him to sleep. He got to see all of his cousins on Saturday at the party, including his cousin Noah (in the photo) who is just two months older. Good times were had by all, and Sam did great with all the new faces.

Sadly, my Mother's father (Daniel Scully) passed away early early Saturday morning. He had been sick for some time, and while this is a sad event, it also brings some peace to our family knowing he is no longer in pain. The funeral will be Wednesday at 10am at St. Mary's in Mobile. I don't have a ton of vacation saved up at work because of Sam's surgery, so we drove back to Macon tonight and will drive back to Mobile for Wednesday to attend the service. Since the drive back and forth in such a short amount of time would be too hard on Sam, we left him with my parents. They were thrilled, clearly. I'm missing him a bit, but we'll see him again in 48 hours! It will be our third trip to Mobile in 12 days. I hate the reason for our 3rd visit, but I'm excited to see some family that we haven't seen in a while, and I'm excited for family to meet Sam.

I'll post more photos when I get my camera back (I left it in Mobile so Mom could take photos of Sam with our family as they arrive in Mobile).

~Kathy

Much Needed Update

It's been a few weeks...time for an update!

Sam is doing fantastic! He had a cardiologist appointment last week. He weighs 16lbs 1oz, and is 26.5inches long. Dr. Cardis ran an EKG and an Echo. He said everything looked great and was functioning as best as could be hoped. He took us off the Lasix entirely (finally), but we will stay on the Lisinopril and Asprin indefinitely. He is going to start spreading out our appointments (the next will be in 2 months). He thinks we will make it a long time before we have to do the Fontan surgery. The only thing I hated was he said, "We want to give you as long as we can with him before that surgery." I don't know...draw your own conclusions for the many ways you can take that statement. But on the whole, Sam's heart is doing wonderful.

Sam's cough, however, will NOT go away. He has been coughing for almost 5 weeks now. No fever, not really even a runny nose, but he coughs and coughs and coughs all day and night. Especially at night. He will spend literally hours coughing ever 2 or 3 minutes, like he can't really clear his throat. Interestingly, this rarely actually wakes him up. It DOES wake Chris and I up...and makes sleeping really difficult for us. The doctors office originally told us there was nothing they could do for him if he didn't have a fever. You can't give kids under 4 years old ANY cough medicine anymore. But I'm getting super sick of this and plan on calling again tomorrow.

We drove down to Mobile last weekend so that I could attend a Bachelorette party for one of my bridesmaids. I had far too much alcohol but hanging with the girls was wonderful. Sam spent his weekend between grandmothers' houses. He was pretty happy the whole time, and didn't seem bothered by all the 'new' faces and people handing him around. He did great on the drive TO Mobile, but he was a total butt on the drive home. My sister came back to Macon with us, so she got to handle the crying baby in the back seat for a 7 hour drive that should have only taken 5.5 hours.

We are getting ready to do it all again this upcoming weekend. We are going BACK to Mobile for a graduation/anniversary party at Chris's parents house. Hopefully Sam will behave! Enjoy the new photos!

~Kathy

Sam's First Party and Mommy's First Mommy's Day

Yesterday we went to Sam's first birthday party. Our neighbors' beautiful little girl turned 3. They had a big party in their back yard, complete with McDonalds burgers and Chick-fil-a nuggets (kid and daddy food essentials). There were a ton of kids there, and the birthday girl got WAY more presents than I ever got on any one birthday! She was clearly having a blast! Sam had a good time too. He met a bunch of new faces, including the birthday girl's 3 month old adorable cousin! My clinical instructor from one of my internships happened to be there (his daughter was an invitee). It was really nice to catch up with him and hear about his new clinic.

Today was Mother's Day. Chris kindly got up with the baby in the middle of the night, and then again when he woke up at 7am. While I slept, Chris and Sam made breakfast for me. We all went shopping for new clothes. Sam ended up with the most swag, naturally. We went to church. Sam has learned that he has a voice...and he decided to use it....ALLLL during mass. The obstetrician who delivered Sam sat right in front of us. We spoke after, and she was so surprised at how chubby Sam is getting! We went grocery shopping after church and spoke with our super sweet pharmacist, who is expecting a little girl in September. She was surprised, too, at Sam's growth. He's just thriving...what can I say!

It was a good weekend. I hate that it's over already. I hope all the momma's had a good Mother's Day. I have so many friends who are new mommies this year...I hope they especially had a good one! Say a special prayer for new mommy Christina (Catherine Cannon Arensberg's big sis) who spent her first Mother's Day in the NICU next to her first baby. Mom's go through a lot for sure, and she has already been through more than any mom I know.

~Kathy