Holidays

So once again I have fallen behind in posts. I have had many “friendly” reminders that I haven’t posted any new pictures lately, and I get the hint. So here is a little holiday montage from the last few months. Let’s start with my three little pumpkins on Halloween:

Sean was Thomas, Jack was a scarecrow, and Rex was an astronaut.

And Michael and I joined in on the fun as Cleopatra and Julius Caesar:



The weather was a little rainy, but who cares when you are filling up a bag with tons of candy? As we were sorting through all that candy later that night, I told Rex we could keep the candy for one week, and then we'd have to throw away any candy that was leftover. He looked devastated. I asked what was wrong, and he said, “There is no way I can finish all of this candy in one week.” I said, jokingly, “Don’t worry, I will help you.” I expected him to be incredibly protective of his candy and insist that I not help, but instead, he let out a huge sigh of relief and said, “Thank you, Mom, for helping me, because I know I can't do it by myself.” HA! He actually thought I was offering out of the goodness of my heart! In reality, I just wanted his Kit-Kats. But I did not feel the need to destroy his altruistic vision of me. That will happen on its own all in good time.

For Thanksgiving, we headed up to Pennsylvania to spend the weekend with Grandma Bernie. The boys LOVE going to Grandma’s house. The look forward to eating Fruit Loops for breakfast (a special treat that they ONLY get at Grandma’s house), and, of course, visiting with Grandma and lots of their Aunts and Uncles. We spent Thanksgiving at Aunt Edie and Uncle Dave's house, but only after starting the morning off with the Macy's Thanksgiving Day Parade.



Any female who has ever worn shorts or a skirt around Sean, knows that Sean has a strange obsession with knees. (Why ask why...somethings just are.) You can imagine his excitement as he watched the Rockette's performance. If only he could have jumped inside the tv....






The highlight of the weekend was visiting Santa and riding the train at the mall.



Sunday was very special as the family gathered together for lunch to celebrate Grandma Bernie's 75th birthday! Happy Birthday, Mom!





Then it was back to Maryland to get ready for Christmas. Grandma Sutton came to visit for a few days, and she and the boys had fun decorating gingerbread cookies and a gingerbread house.



Rex didn't care for the taste of gingerbread very much, but Sean seemed to like it!


Grandma Sutton was able to baby-sit for me (I'm so glad she's back in the same time-zone!) so I could attend Rex's class for Moms and Muffins. It was fun re-living life as a kindergartner for a little while. It makes me thankful for adult sized chairs. But I had a great time eating muffins and having some special Mommy/Rex time.



This past week, Michael and I were able to attend Rex's Kindergarten Christmas Pageant. Yes, St. Mary's has an actual Christmas pageant. It's Catholic school- no "holiday festivals" here. And it was adorable. All three kindergarten classes (about 60 kids total) were dressed as angels. A few children were chosen to dress as Mary, Joseph, shepards, etc. and they acted out the parts as Deacon Moore read the Christmas Story. (No, not the one with Ralphie and the Red Ryder BB gun...the real Christmas story with the manger and baby Jesus.) The "angels" sang Christmas carols as they signed them in sign language. It was absolutely precious. Definitely put me in the Christmas spirit.






Finally, last night we bundled up and headed downtown to watch the Boat Light Parade. The members of the Eastport Yacht Club string up Christmas lights on their yachts and sailboats and parade down Spa Creek and Ego Alley. Some of the boat lights were impressive, some were not, but they all get kudos for effort and for braving the cold. Our favorites: "Christmas Story" complete with Dad's Leg Lamp, Ralphie stuck to the frozen flag pole on the bow, and the crew chanting "You'll Shoot Your Eye Out", and the Blue Angel. Sean favorites: "Train!" and "Christmas Tree!":












I had a hard time getting pictures that were not blurry. I don't know how to use my camera to photograph moving objects. Given that I have three children that rarely sit still, perhaps that should be a New Year's resolution...

I would like to think that maybe I will get another blog post in before Christmas, but the realist in me says to wish you all a Merry Christmas right now. So, may you all find the warm spirit of this wonderful season, and may you be able to share it with those you love, near and far. Merry Christmas! With lots of love from the McAllister Family.

Happy First Birthday, Jack!

Our baby boy has turned one year old! That is call for celebration! But with respect to all of the other "excitement" that has been going on around here, we kept our One -Year -Old bash very low-key, but still full of lots of love for our youngest munchkin.

After a nice family dinner, we sang happy birthday...

and of course, no first birthday is ever complete without the official first cupcake:

And finally, he opened his presents:

Poor Jack...he is the low man on the totem pole around here, but he still has a smile that could melt any heart. He is one of the sweetest, smiliest, most joyful babies I have ever known. And he does. not. sit. still. He started walking about two months ago, and now he is into EVERYTHING!!!!! He loves to spend his days emptying out the recycling bin (leaving empty water bottles and cardboard boxes strewn throughout the house), splashing in the dog's water bowl, rearranging furniture, and emptying out kitchen cabinets and drawers:

He is so proud of himself...how can you get mad at this face?

You are exhausting, little one, but your smile and the way you snuggle in so nicely on my shoulder have kept me sane on more than one occasion. You, of course, are growing up way too fast, but it is so much fun to watch you discover the world. The simple joys of a flashlight or blowing bubbles are amazing to you, and it helps to remind me to appreciate the little things in life. Sometimes they produce the biggest smiles, the deepest belly laughs, and the best memories. So Happy 1st Birthday. May it be the first of many and may you find more and more happiness with each one.

Our Little 'Saint'

In the blur of the past few months, there have been several monumental milestones for the McAllister family. Rex's first day of Kindergarten is one of them. Yes, Rex is officially a 'Saint'- and no, I'm not referring to his angelic behavior. On August 26th, Rex joined the family of the St. Mary's Saints as he started his first day of Kindergarten. Doesn't he look adorable in his uniform?

Usually, Michael takes Rex to school in the morning, and I pick him up in the afternoon (gotta love the carpool line...). But on the first day, Michael dropped us off in front of the school, and I walked Rex into the courtyard to line up with his class. Rex was a little nervous, but very anxious to start the school year. He was a little disappointed that he doesn't get to ride a school bus, but he was so excited to find out that one of his friends from preschool is in his class.

On that first morning, when it was time to walk with the teacher into the school, the other little boy grabbed Rex's hand, and they walked off together. It was adorable. It's as though they were sure they would be okay as long as they stayed together.

Unfortunately, there was no one there to hold my hand as I cried the whole way back to meet Michael at the car. I wasn't so sure I would be okay. Rex had always been with me. From the time he was born, and even when I went back to work when he was six months old, he's been with me. Even as he went through the different preschool classrooms, it was only for a half-day, and he was still just down the hall. And his teachers were people that I knew and trusted. Now, I have to send him across town, to a completely different school, with complete strangers, for an entire day. It's a little hard to let go. But we have both survived, and he is doing really well. His teacher is strict, (which we love) and it works well for him. She keeps him in line, and he really likes her. There are also two assistants in the class that help the children rotate through their different centers (Reading, Math, Language Arts, etc). In addition to the centers that they do in the classroom, they have six different "specials" that they rotate through on a six day schedule. The specials include Media (which we always knew as library), Spanish, Phys. Ed., Computer, Music, and Art. Rex loves having a different "special" to look forward to each day. After eating lunch in the classroom for the first few weeks, the kindergarteners took a big step earlier this month, and now they eat in the cafeteria just like the older grades. They even have the option of buying their lunch (yay!), and Rex loves chicken nuggets and pizza days. He has really grown up in the past few months. It's hard to believe that he has begun a journey that will end with him leaving home. Time is going to fly by... but we're looking forward to the fun ride.

Home Sweet Home

For the past two weeks, Sean has literally been bouncing off the walls. If it weren’t for the scar on his back, you would never know what he has been through. I guess in my rush to tell everyone what was going on, I forgot to tell him that he had major surgery. He certainly doesn’t seem to realize it! He’s too young to milk it for all of the sympathy that it’s worth. The nurses said he would “self-regulate”, meaning that if physical activity hurts or puts too much strain on his incisions, he won’t do it. I’m guessing he’s not in much pain anymore. He’s back in full force!

We returned home in the evening of Wednesday, September 23. We are glad to be back, but part of me wishes we could have brought the heart monitors and a nurse home with us just for piece of mind. The other part of me is glad the doctors felt that we didn’t need them. Sean’s blood pressure was still a little high at discharge, but he was getting around so well that the doctors just could not justify keeping him in the hospital any longer. They said his blood pressure could be monitored here locally. I think they were sad to see him go- he was a stellar patient. I’m guessing most children in the hospital are a little difficult to examine, but not Sean. Any time a nurse or doctor came in to listen to his heart or take his blood pressure, he would march right over to the chair, lift up his arm and say “take a blood pressure,” or when he would see a stethoscope, he would say “listen to my heart.” It was adorable. I don’t think the doctors and nurses were very used to that.

On Monday, September 28, we went to Sean’s regular cardiologist (Dr. Cummings) for a post-op appointment. Sean’s blood pressure was lower than it had been, but still a little high. We will go back in eight weeks to check his blood pressure again. If it is in the normal range, we may start to wean him off of Enalapril, his blood pressure medication. They will also continue to monitor his mitral valve and the thickening of the walls in the left ventricle to see if, with the elimination of the coarctation, those areas improve. The cardiologist still thinks that his mitral valve will need to be addressed at some point, but there is no way to know if it will be in two months, two years, or twenty years. It just needs be to watched closely.

In November, we have an appointment with Dr. Caplan, a geneticist with the University of Maryland. Sean was evaluated in May 2008 by Dr. Greene in the same office, but has since had some major changes to his medical history (i.e. hearing loss, heart defects). There are some additional genetic tests we’d like to have run on Sean to see if there is a genetic component to his medical issues. We have always assumed there is something there, we just don’t know what it is yet. The tests they conducted last time all came back normal, but there have been advancements in genetic testing over the past two years. The results may be different this time.

Until then, I am hoping we can take a break from doctor offices for a while. We are being extra vigilant with hand washing, etc. to help ward off the flu and other fun illnesses. The flu is basically Sean’s worst enemy right now. He is especially susceptible given his age and heart condition. If only I could keep him in a bubble…

I want to thank you all once again for the wonderful support you have shown to Sean and our family. Your thoughts, prayers, and well wishes mean so much to us. Sean is doing so well…there is no doubt that God heard our prayers. I cannot thank you enough. And Sean thanks you, too:

Heart Repair

First things first- The surgery is over, and it went very well. Sean is recovering very nicely. We could not be more pleased with his progress. Now- how we got to this point:
We drove back up to Philadelphia Thursday

and spent the night at the Philadelphia Ronald McDonald house. What a wonderful program they run! We had called the day of arrival, as instructed, to see if they had any open rooms, and we were incredibly fortunate to get the last room available. It’s a simple room in the “Carriage House” section, with the bathroom located across the hall. Upon check-in, Sean was able to choose a book, a stuffed animal, and a toy from a huge bin of donated items; after he found a “talking” Thomas-The-Tank-Engine book, he never made it to the toys and stuffed animals… ‘peep-peep’ was all he wanted to hear. (Again, and again, and again, and over again...) We were then given a mini tour of the house. We saw where the kitchen is, with its fully stocked pantry, and where a donated dinner is provided each evening. There are also play rooms, a playground, lounges, and laundry areas. And there is a model train set up in the dining room area that Sean fell in love with....

he was so sad when we finally made him say goodnight to the train so we could all go to bed.
The house is mainly run by volunteers, and only charges $15/night for each family. You are welcome to stay as long as you need, until the day your child is discharged from the hospital. This particular Ronald McDonald House was the first ever, and is housed in a former mansion that has had several additions over the years. The mansion area is gorgeous, and if I ever get a chance, I’d love to take a more detailed tour (Michael did). But I digress... we headed to our room and pretty much went straight to bed. We needed to get up at four-thirty and we knew we would need our sleep for the next day. I’m sure I did sleep for an hour here and there, but it felt as though I simply watched the clock all night long. Sean was snuggled in between Michael and I (a very rare treat for him), and he slept very peacefully.

Since Sean couldn’t have anything to eat or drink after 11:00 pm, we let him sleep until it was time to go, leaving a few extra minutes to visit the train downstairs before leaving.

When we got to the hospital (a few blocks away), we signed in and were taken back to a room where Sean changed into a hospital gown and was given a sedative to help relax him and eventually make him sleep. It worked like a charm. Around 7:30, we met with the anesthesiologist and then followed her and Sean (asleep in his rolling bed) down the hallway to the outside of the operating rooms. We gave him a kiss, and off they went. I can honestly say at that point, I have never been more nervous in my life. I knew he was in good hands, but still, handing your child over to strangers for heart surgery is terrifying. As Sean went off to be prepped for surgery, we were taken up to Dr. Spray (the surgeon)’s office to meet with him. We had been told he is a “tall man of very few words”, and that pretty much sums it up. No idle chit-chat, there's work to be done; a heart that needs fixing. He explained the surgery and the risks (so many! becoming a paraplegic?!), asked if we had any questions (we didn’t), then off he went to get scrubbed up. We were then taken on a tour of the cardiac floor where Sean would come after surgery, and finally, we were shown to the family lounge just outside the area where Sean would be recovering (also sponsored by Ronald McDonald). The nurse promised hourly updates. By 9:30, we were told that the repair was done and they were closing him up, and by 10:00 we were told and we could go to the consult room to meet with Dr. Spray again. He told us that the surgery went very well, and after a brief visit back in the lounge, we were told we could go to Sean’s CICU (cardiac intensive care unit) room to see him. All cardiac patients go directly to the CICU following surgery. Sean was sleeping peacefully when we came in.

He was hooked up to lots of different tubes and machines (a chest drainage tube, one arterial & two vein IV lines, EKG leads, a blood pressure cuff, and oxygen). But he had good color. He would half open his eyes every now and again, but he was pretty much out of it. Until the sedative meds wore off. Then he raised hell. He was already on morphine for pain, but after he ripped out one of his IVs, the nurse (who’d been with Sean since before surgery) gave him “anti-anxiety” medicine (a sedative). That chilled him out for awhile. He went through a cycle where he would rest peacefully, but then freak-out every 2-3 hours when his pain meds wore off. Sean’s surgery required a thoracotomy, which means that instead of accessing the heart from chest, they access it from his side under his arm and around to his back. From what the doctors & nurses have told us, this is one of the more painful surgeries you can have because they have to cut through so much muscle and tissue). So he was pretty out of it the first day. By Saturday, he was off of the supplemental oxygen and was able to go a little longer between morphine doses. By afternoon, they backed off on the sedative as well. By evening, Sean was able to stand, but not really walk around. He also started to eat a little more, but was still on IV fluids because we could not get him to drink very much. He had a good night, and by Sunday morning, he was up and walking around. His full appetite was back, and he was hungry! He was (as he should be) incredibly protective of his incision- he would not use his left arm, or even lift it above waist level. Other than that, he was back to his old self. He was up out of bed, singing songs, playing with his trains,


and eating very well. Amazing. In fact, we had to settle him down a few times because he'd get excited playing with trains and his heart rate would shoot up to almost 180 beats per minute... a little time-out with a train book calmed him down, then back to playing.

At this point it was time to transfer him from the CICU to the CCU (cardiac care unit). So Sunday afternoon, we moved down the hall, and Sean continues to do well, improving almost hourly, eating and playing:


The only concern right now is that his blood pressure is still high. This is not uncommon after a coarctation repair. Basically, his body has had high blood pressure due to the narrow part of the aorta. Once that was cut out, his body is in a bit of shock and overcompensates by raising the blood pressure. This should regulate itself over time (weeks to months), but for now, he has to take blood pressure medication. They are now working on fine-tuning the dosage. Once that is figured out, I think we will get the all clear to go home! Sean has been an amazing little trooper through all of this. He has remained in good spirits through all of the poking and prodding and pain. And the nursing staff here at CHOP has been fantastic. They have all fallen in love with Sean, and work very hard to keep him happy. We could not be more pleased. God heard all of our prayers, and has taken very good care of our little man. For that, I am forever grateful.

Surgery Update

I will give more details later, but I just want to let everyone know that the surgery went very well and Sean is recovering very nicely. He is in a good bit of pain, but the pain meds are helping with that. He's in good enough spirits to flirt with the nurses now and then ;-). Thank you for your continued prayers and support!

Minor Setback

So we packed up and drove 2 hours to Philadelphia Wednesday. Sean had his pre-op appointment where they took an x-ray, took his blood pressure, and took some blood. Then they told us that due to some emergency surgeries that had come up, Sean's surgery had to be moved to Friday. So after a lot of deep breaths, (and a few choice words), we got back in the truck, and headed back home for the night. A word of advice- don't try to leave Philadelphia at 5:00. Especially in the rain. Everyone else is trying to leave, too. Over three and a half hours later, we were exhausted, but safe at home. Unless we hear otherwise, Sean is scheduled to arrive at the hospital at 6:00 am tomorrow (Friday) morning. We will drive back up tonight to spend the night so we won't have to get up so early (and sit in traffic with the same people who were trying to leave last night). I'll keep you posted if there are any changes. On a good note, we have another full day to send loving prayers Sean's way. And I send a prayer to the children who had to have the emergency surgeries, and their families, too.

A Broken Heart

**Sorry for the long post- there is a lot of important info to share**





I’m waaay behind on blog posts right now. I promise I eventually will cover everything that has happened in the past few weeks; somehow I lost the entire month of August! The last thing I remember, it was July- now here we are in mid-September. How did that happen? Actually, you are about to find out- but let me first apologize. Some of you know about this, some of you don’t. I haven’t been very good about keeping track of who I’ve talked to and what I’ve told them. So here is the whole story from the beginning. Back in the Spring (it was either April or May), Sean had croup. Twice. The second time, when Michael took him to Nighttime Pediatrics, as the doctor was listening to his chest, he off-handedly mentioned that he could hear Sean’s heart murmur. Michael was a little surprised by this, considering that we didn’t know Sean had a heart murmur. The doctor assumed we knew about it, and then suggested that we make an appointment with our regular pediatrician to have it checked out.

I took Sean to his regular pediatrician the next morning, and sure enough, he heard it, too. He said there are many “innocent” heart murmurs, but that this one sounded like it was in a different area of the heart. He referred Sean to Dr. Susan Cummings, a Pediatric Cardiologist at Children’s National Medical Center (Washington, D.C.) for further testing. As with many specialists, there was a two month wait for an appointment.

Two months later (the end of July), Sean met Dr. Cummings. She did an exam and also ordered an echo-cardiogram, which is a sonogram of the heart. This involves Sean lying still on a table for almost an hour. Luckily, they had a small TV nearby with a Thomas DVD playing, and that made life a lot easier. Based on this echo-cardiogram, the doctor diagnosed three separate heart defects. They are all congenital, meaning he was born with them. The first is what is called a Coarctation of the Aorta. Sean’s aorta narrows in the section that goes to his lower body, leaving the blood pressure in his upper part of his body about 30mm higher than in the lower part. A simple procedure to indicate this condition is to take his blood pressure in both his arm and his leg. The numbers should be similar; his are 30 mm different. So Sean’s heart has to work harder to push his blood through his body. This extra effort has resulted in some thickening of his heart walls. The heart is a muscle, and like other muscles, when you stress it, it grows bigger. While this seems like a good thing (hey, you work-out to get big muscles, right?) in the case of the heart, it’s not a good thing.

The second defect that the echo-cardiogram showed is mitral valve stenosis (or narrowing), and “regurgitation”. Normally, blood flows through the mitral valve in only one direction. In Sean, some blood is regurgitated (leaks) backwards into the left atrium with each beat of the heart. At least some of this is a result of high blood pressure caused by the coarctation; it will be re-evaluated after the coarctation is corrected. Regardless, the stenosis will remain.

Finally, the echo showed a bicuspid aortic valve. The aortic valve is supposed to have three sections, but two of Sean’s are slightly fused together. The doctor explained that Sean’s first step will be to correct the coarctation. The hope is that by fixing that, some of the problems with the mitral valve will be relieved, and the thickening will subside.

Dr. Cummings said Sean would need to have a procedure done- probably a catheterization/balloon angioplasty procedure, to open up the narrow part of the aorta. She referred us to Dr. Slack, who also works at Children’s National Hospital. We were able to get an appointment for the next week. Dr. Slack was very nice, and felt that in addition to doing the balloon angioplasty, Sean would need a stent in the aorta to keep it dilated (held open). Unfortunately, since the stent is made of metal, it will not grow with Sean’s aorta. As Sean’s heart grows, the procedure will need to be repeated at least two more times in order to continue to widen the stent to the proper size (probably at about ages 12 & 18). The idea of the stent made us a little nervous, so I spent many hours on the phone setting up appointments with Johns Hopkins (Baltimore) and Children’s Hospital of Philadelphia, PA (CHOP) to get second and third opinions.

There are two different approaches to correcting a coarctation. One approach is the catheterization I discussed above. This is performed by cardiologists called Interventionalists. They insert a catheter with a balloon attachment into the upper leg and feed it through to the heart. When the balloon reaches the narrow part of the aorta, it is dilated to open the area up. At this point, the doctor either inserts a stent to hold the aorta open, or they just remove the balloon and the tissues of the aorta stay stretched to the proper size. The other approach is corrective surgery. This is performed by cardiac surgeons. During this procedure, the surgeon accesses the aorta through an incision on the patient’s side under the arm. The surgeon cuts out the narrow part of the aorta, and then stitches the two remaining ends back together.

Two procedures, same outcome: blood-flow through the aorta is normal. One procedure is more invasive, the other needs additional procedures to be done in the future. Dr. Slack was very honest with us; he explained that he is an Interventionalist, and his specialty is catheterization. That is the procedure he recommends because that is what he does. We were eager to see what the other doctors had to say. Both Hopkins and CHOP were eager to get us in as soon as possible for evaluation. The nurse liaison at CHOP was incredibly knowledgeable and informative, and very helpful through the whole process, but due to scheduling, our next appointment was at Johns Hopkins to meet with Dr. Brenner. Dr. Brenner is a pediatric cardiologist; he does not perform either of the procedures, but, like Dr. Cummings, he examines & diagnoses heart defects. (I think at one point he may have performed procedures, but now works as a diagnostician). We had a second echo cardiogram done (before we do anything to our three-year-old’s heart, we want to be sure the first echo caught everything), and it confirmed the findings of the first. Additionally, with the new echo-cardiogram, Dr. Brenner saw a small atrial septum defect (a small hole between the right and left sides of the heart) and mild tricuspid valve regurgitation; as with the other valve defects, these do not need to be addressed at this time. The main focus is still on the coarctation. Dr. Brenner felt that we should opt to do the surgery. It is slightly more risky and much more invasive, but compared to the catheterization where Sean would need at least two more procedures, the surgery is likely to correct the problem with only one. Because of Sean’s age, the chances of having a recoarctation (meaning the corrected aorta narrows again) are very slim. So at this point, we have two different doctors, two different hospitals, two different opinions, and two different procedures. What do you do when you have a tie? You get a tie-breaker. Off to Philadelphia.

We met with an Interventionalist named Dr. Rome. Despite the fact that catheterization is his specialty, Dr. Rome also recommended surgery. Michael and I had been leaning towards that anyway, but it was nice to have some confirmation that we were making the right choice, and Dr. Rome gave us additional arguments in favor of surgery. Now we just needed to choose which hospital. Dr. Brenner from Johns Hopkins was by far one of the nicest doctors I have ever met. His bedside manner made you feel as though he was your father and he was taking care of everything; you knew that you were in the best hands. Unfortunately, as I said, he does not actually perform the procedures. Besides, CHOP has the #2 Pediatric Cardiac Unit in the nation. They literally do twice as many of these procedures each year than Hopkins does. Not too shabby. And luckily, since that is the same hospital where Sean’s lip repair was done, we are pretty familiar with the hospital. So we have chosen CHOP, and Dr. Thomas Spray will be performing the surgery. While we have not met him yet, his qualifications speak volumes. Sean is in good hands.

This Wednesday (the 16th), we will head to Philadelphia for Sean’s pre-op. appointment. Surgery is scheduled for Thursday, September 17. We have been told to expect a 5-7 day hospital stay, possibly longer if there are any complications. We have every reason to believe that surgery will go smoothly, and that Sean will recover nicely. I will do my best to keep everyone informed of his progress. I don’t know what kind of computer access will be available.

So, you can see why the month of August was pretty much a blur. We have sorted through many emotions over the past six weeks- from anger for how this has gone undetected for so long, to sadness of what Sean has to go through, to fear of what could happen… Right now we are in the “we know what is wrong, let’s get it fixed” stage. It is likely Sean will need more procedures in the future to deal with the other defects, but they are at the bottom of the checklist right now. The coarctation needs to be repaired first, and we are eager to get it fixed. Luckily, Sean is young, and doesn’t really know what is going on. He just knows that we go to the doctor’s office a lot. He has been incredibly patient for a three-year-old. Rex is old enough to have some understanding of everything, and we have been very open and honest with him. When I explained to him that parts of Sean’s heart were not working properly and we were going to have to take Sean to the hospital so they could fix it. It didn’t seem to faze him at all. He wanted to know how the parts got broken, and I explained that he was born with his heart this way. A few hours later, he came to me and said, “Mommy, why would God give Sean a broken heart? Isn’t he supposed to be good?” Seriously. It's hard to answer a five-year-old’s question when you can’t even answer it for yourself. I explained to him that everything happens for a reason. We may not always know what that reason is, but God does, and we just have to trust him. That seemed to comfort him for now. We are so blessed to have such wonderful family and friends who have reached out to us with offers to help in every way imaginable, as well as sent us much needed and very much appreciated prayers and good thoughts. Thank you all so much. Sean is a very special little boy, and he is a fighter. (Just ask his brothers…or anyone else who gets in his way...) It's somewhat humorous how the doctors keep asking us if Sean fatigues easily or sleeps a lot, and they reassure us that he’ll have more energy after surgery. HA! Sean has more energy than any six people I know combined. Between his spunk and zest for life, and lots of thoughts and prayers, I know he’s going to be just fine.

Rehoboth Beach

Our friends, the Thibaudeaus, spent a week at their neighbor's beach house in Rehoboth this summer, and they invited us to come down for a few days. I had wanted to get the boys to the beach, and this seemed like the perfect opportunity. So we packed up our swimsuits and beach toys and headed to the beach! The first night we got there, we took the kids to ride go-carts. I had never been in a go-cart before- they're a lot of fun! Sean giggled the whole time. Rex was big enough that he could drive some of the smaller ones all by himself. It's a good thing the track wasn't crowded- he had to sit down so far to reach the pedals that he could barely see where he was going. He did great until it was time to stop. No one had thought to tell him where the brake was. The poor attendant was nearly run over as he tried to bring the cart back to the starting area. I made a mental note to make sure I show him the brake pedal in eleven years when he starts driving a real car.

The next day was cloudy and rainy in the morning, so instead of hitting the beach, we went miniature golfing. The kids had a lot of fun, even if they did cheat the whole way through.

Afterwards, we headed to Fun Land, which is a little amusement park on the Rehoboth Boardwalk. The Pirate Ship was a big hit. Sean broke out into tears every time we rode it...not because he was scared, but because he was mad when the ride was over and he had to get off! I learned that five times is my limit on the Pirate Ship before my lunch starts to reappear in my throat. I think Sean would still be riding it if we let him. Luckily, he also enjoyed "flying" the airplanes:

That night, we hit the outlets. No trip to Rehoboth is complete without tax-free outlet shopping. I'm a sucker for a bargain. I was excited to visit the new Kate Spade outlet. I will spare you the details, but suffice it to say, I wasn't disappointed. The kids were easily entertained as they waited.

The next day, we finally made it to the beach. The boys had fun splashing in the waves a bit, but they spent most of their time playing in the sand.

Michael spent his time digging a huge hole for the kids to play in. Then he kept them busy by making them fill it back in again.

And don't worry, Michael was very careful to dig the hole in tiers so it wouldn't collapse on anyone. He is an engineer after all.

Jack's first trip to the beach was pretty uneventful. He slept most of the time, and when he was awake, he preferred people watching to playing in the waves. The water was a little too chilly for his liking, but he loved eating the sand!

We were having such a nice time, but alas, it was time to come back home. It was a nice little get-away, but I’m thinking a longer beach trip will be in our plans for next year! I should have all the sand cleaned out of my van by then.