Cath Tomorrow

I got a call from SLCH today saying that next week's cath schedule looks crazy busy so they want him in tomorrow! We leave at 5:30 and he's Dr. Balzer's first case. We feel so blessed that we were able to get Dr. Balzer after all, and some of our anxiety is relieved knowing that the same doctor who has done his other caths in St. Louis will again be the one doing it. They told us to plan on being admitted Friday night, but we're hoping it will just be a diagnostic cath and that we'll be discharged by dinner time. We'll update tomorrow during/after the procedure. Goodness knows we'll have plenty of time while he has to lay flat for six hours afterward! Pray for him to remain calm. When I tried talking to him about this coming up he started getting all panicky about the mask again. He is deathly afraid of having tubes or anything near his mouth. I think subconsciously he remembers things from infancy and that period of time when his oral aversion was so bad.

Surgery Needed and AHA Heart Walk

Well, our gut instincts were right. We have been noticing changes in Conway lately related to how much he is sleeping so we had an appointment in the middle of April where Dr. Bromberg was leaning toward thinking this was indicative of his RV-PA (right ventricle to pulmonary artery) conduit needing to be replaced to a larger size, but wanted to give it another month to rule out the possibility of Connie just having a virus or something. We went back today for an echo and sure enough, his RV pressures have gone from 66% in late February to well over 80%. Anything over 75% means that the conduit is too stenotic, or narrowed. He's had this gortex conduit since he was 5 months old, so as his heart has grown, the conduit has stretched and become obstructed. We knew it would have to be changed at some point. Now we're just crossing our fingers that Dr. Bove (his surgeon in Michigan) will be able to use a large enough replacement that it will last Conway a very long time. The thought is also that while he is in surgery he will have an additional ventricular lead wire placed and have his pacemaker generator changed out to a new, upgraded model called a bi-ventricular pacemaker. That would give us more options in the future regarding the mode in which he is paced. When he was younger, he had to be changed to VVIR mode from the typical DDD mode because of his high atrial rates. Today he was switched back to DDD mode to see if that impacts his RV pressures, but we aren't holding our breath that doing that will have any positive effect. The good news is that his function is still good! Surgeons can fix obstruction, they can't fix function, or the squeeze of the heart muscle. The next step will be to have a diagnostic cardiac cath done here in St. Louis and send that info, along with his clinical reports and latest echo to Michigan for Dr. Bove's evaluation. If he agrees that surgery is necessary at this time, we will wait for his team to schedule it and have it done at C.S. Mott Children's Hospital at the University of Michigan, Ann Arbor, where his previous surgeries have been performed. We are hoping to have it done soon, so that he has the whole summer to recover and will be ready to start Primary (kindergarten) in August. We have given the okay to have the cath done by another doctor at Children's besides Dr. Balzer. The reason being is this is purely diagnostic in nature and no interventions will be attempted and we'd get in sooner. We may have to wait weeks to get an appointment scheduled with Dr. Balzer so it would be best just to move forward with the earliest possible date. The American Heart Association Heart Walk was held Saturday at Busch Stadium and Conway had a special treat this year. He got to walk with his heart buddy, Grant, the whole time. He and Grant have the same structural defects and have had a very similar surgical path. Both have pacemakers, both traveled for surgery as infants, etc. They are only 6 months apart and our hope is that they become life-long friends on this journey. They'll be able to confide in someone that understands what it is like to have heart problems. Here's a picture of the two of them comparing their medical alert ID bracelets.

And here they are posing for the camera

Connie and the girls also got their photo snapped with the SLU cheerleaders and the Billiken. Maybe he'll go there just like his Mommy, Daddy, Grandpa Beckemeier and Uncle Geoff!

We'll update again after we get a date for the cath. Thanks for keeping us in your prayers as we embark on this next step of Conway's heart journey.

Results

After a chest xray, exam and nice long chat with the good doctor, we have settled on taking another, closer look in a month. This sleeping more thing has only been going on for 1.5 weeks, so we want to wait a month and see if this is a sustained issue, or could possibly some random virus or have another cause besides the heart. This is probably the beginning of him becoming symptomatic due to the stenosis in the conduit. If he's still sleepier this time next month, Dr. Bromberg will do an echo and likely send him for a cath here in St. Louis and then send the info to Dr. Bove in Michigan for his opinion on timing of surgery to replace the conduit. He said things could go quickly so that hopefully he'd be fully recovered and able to start kindergarten with no restrictions.

Oral Surgery Follow-Up and School Update

Conway met with his oral surgeon today to make sure his mouth healed properly and to discuss the biopsy results from the mass that was removed. Thankfully, it was benign and his mouth looks great! Both boys came and were very well behaved so we made a trip to the cafe for jalapeno chips and gatorade.

On the school front, things didn't go as we'd hoped at the kindergarten screening back in February so he's been invited back for a rescreening mid-April. We are confident that wherever this boy ends up for kindergarten (if he even goes to Kdg) will be exactly where the Lord wants him to be and that God has great things in store for him. We are praying for God to show us His will and trust that while it may not be our will, it will be what is best for our son.

Thank you for your continued prayers. We are so blessed to have you in our lives!

p.s. Conway can now pump himself on the swing!

Labs

Not really updating this time to fill everyone in, but more for our own records. Connie had labs drawn yesterday and his BMP was normal and pro BNP elevated at 677 (100 is upper limits of normal). While this may seem high, his trend continues to go down so we are taking this as a good sign. His levels have decreased 10 fold since his mitral repair in 2009.

Back to Normal

Connie stayed home yesterday and was pretty close to normal. He ended up getting one dose of ibuprofen around lunch and looked a little blotchy faced all day but other than that was himself. Today he went to school and has been eating his normal diet of hot sauce, jalapenos and ice water! We follow up with the oral surgeon in three weeks. Thanks again for the thoughts and prayers!

We're home

First, you need to read the next post, then jump back up here.

We arrived home at about 6:40pm after his 30 min. surgery. You know our Connie, he does nothing by the book. Right after they brought us the discharge papers to sign just before 3pm, he got lethargic and limp and wouldn't respond to his name. He had been up, alert, talkative and happily drinking slushies for an hour and then this happened. It was alarming for sure. The nurse happened to be in the room when it took place because we had just called for help with getting him up for the bathroom (still had IV). She was calm, but immediately called for a doctor, which got me a little worried. His anesthesiologist was right outside the door and came in to observe. They hooked him back up and checked his vitals, which were normal. He just could not maintain any level of alertness. I later described the episode to cardiology and they think it could have been a vasovagal syncope type of thing (brief fainting spell). He took a decent nap afterward and then once we were discharged, we headed straight for the hospital cafeteria, where he'd been begging to go all day. All he was allowed was soft foods but he's not crazy about puddings and such. We let him get some salami and juice and sat down to enjoy. Moments later he vomited all three slushies! On the way home he got sick again and did so again following his bath. We gave him half a percocet at bedtime in hopes that when his local wears off he won't hurt too badly. He'll stay home tomorrow, mainly so we can make sure some food stays down. If he's doing well he'll go back to school on Thurs.

Thank you for your prayers today! They mean a lot.

Surgery Day

Conway's oral surgeon just came back and said all went well. He was able to save the front baby teeth and work around them so that's great. He gave us the tooth he pulled out so Conway can get a visit from the Tooth Fairy tonight! We will go back for a follow up in three weeks. He said there will be some swelling and soreness, but they will numb it which should last until bedtime and then he can have some percocet tonight to help him sleep. This was the first procedure he's had (and he's had many) where he's been scared beforehand. He was scared mainly of the mask they use to give the gas. This puzzles me since he uses a mask at home for his nebulizer breathing treatments. He wanted us to go back with him and some hospitals allow that, but not Mercy :( he did get Versed beforehand and it did knock him for a loop, but it didn't make him silly and goofy like it's done in the past. There was definitely still a somber mood in the room. Now I just hope and pray he won't need anything else medical for a good, long while. Thanks for the prayers. We'll keep you posted after we get to see him.

The Birthday Boy

Connie thoroughly enjoyed his day. And to make sure he made the most of it, he got up at 5am! We had a mini party opening gifts this morning at 6am on our bed! Soon after he woke he wanted his favorite breakfast, McDonald's. Then he spent time watching bowling videos on YouTube and waiting patiently for 2pm. That's when his cousins Liam and Brooklyn and Aunt Mary (godmother) arrived and went to Brunswick with us for bowling and arcade games. He got several spares today (thanks to the ramp) and probably will require some PT for his shoulder given all the skee balls he threw. When we returned home, Grandma and Grandpa George and Uncle Terry (godfather), Aunt Celeste and more cousins Anna and Keegan were waiting to celebrate with us and share in the bowling birthday cake. He opened his presents, we sang, ate and he played. He just climbed into bed a very happy boy! Thank you to everyone who shared in this day with us, both in person or in prayer. You all mean so much to us.

Here are some pics from today.

Five Years Ago

...a beautiful baby boy joined our family. He gave us a little scare during delivery as there was some evidence of meconium when they broke my water. They brought in the NICU team to check him over. They gave him a good suctioning and said he was great. He was gone for his bath for what I believed to be a very long time, but we were more annoyed than worried. Before the nurse brought him back, she came in to deliver the news that they heard a heart murmur, but that it was very common and nothing to worry about. We had no reason to believe anything was wrong. We enjoyed the next two days with our new addition, so grateful for the smooth delivery and the fact that he was born at term (ON his due date, just like Mary Kathleen!) and was a very hearty 9 lbs. 2 oz. (also just like his sister, Mary Kathleen!). Here are some photo memories from that day:

Pre-Op Check-Up

Well, Conway wasn't due back to the cardiologist until mid to late March, but since he's scheduled to have this oral surgery on 3/6, he was required to get a full cardiac work-up. His appointment was today and here's the news we've got so far:
1) He looks great. His stamina and endurance are unchanged and we have no new concerns with that. He never complains of fatigue or chest pains so that is good.
2) His pacemaker is AWESOME! He has about 5.5 years of battery life left on it and his leads look good.
3) He had an echo and we don't have the complete report yet as it wasn't available for the doctor to read yet. The doctor did come in the room a few times during the echo and remarked that the tech told him things looked pretty unchanged. His gradient across the valve is higher, but it might just be an issue of the angle the measurements were taken. He's going to compare it to his last two and get back with us.
4) We were supposed to head over to meet with the anesthesiologist after the cardiology appointment, but the wonderful Dr. Bromberg made a phone call and spoke with the doc himself and was able to save us the trip. So, if the echo looks unchanged and Dr. Bromberg feels Conway is safe to have surgery on 3/6, then he will.

The Children's Heart Foundation is having a trivia night on 3/10 to raise funds for CHD research. We will be going and sitting at Dr. Bromberg's table! If you are interested in getting a table let me know and I'll pass on the details. There is also a CHD Night at Busch Stadium at the end of May. I believe the Cardinals are also having some sort of pre-game ceremony for CHD survivors as well. Tickets go on sale soon and a portion of the proceeds go the the Children's Heart Foundation. Again, let me know if this is something you'd like to join us for.

While we certainly wouldn't wish complex heart disease on anyone or their child, we are so grateful and forever changed by the relationships we've made on this journey. We know God has placed so many special people in our path and we thank Him every day for each and every one of them and each and every one of you!

Crazy Times and Prayer Request

Okay, prayer warriors! We need you to storm heaven again. Life has been pretty hairy here lately and is about to get even more so. I am sure things could be much worse. I remind myself that we are living life at home and not cooped up in some hospital so for that especially I am thankful.

Here are our specific needs for you to keep in mind:
1) Kindergarten Screening. Conway goes tomorrow (Saturday) morning for testing to see if he qualifies for entrance into a private school. We are especially nervous given his recent tears over attending said school. I am pretty sure he might think he's going to be switching schools tomorrow and no matter how many ways we try to explain it, he is virtually inconsolable on the issue. Please pray that God calms him so that he can do his best and showcase the gifts God gave him.

2) Oral surgery and pre-op appointments. We got several calls today regarding his upcoming oral surgery scheduled for 3/6. We were told that the anesthesiologist wants to examine him and also needs clearance from his cardiologist. While I appreciate their thoroughness I am disappointed that they won't take our card's word. Rather, they are requiring a full cardiac work-up prior to the surgery. Conway was just seen in Sept. and cardiology assured them that nothing major happens over the course of a few months. Don't get me wrong, I appreciate the fact that he needs to be his best before going under, but I also am upset that this is turning into such an ordeal. He was put under for his broken arm surgery at the same hospital in summer of 2010 without all this fanfare. And at that point, he was less than a year out from major open heart surgery. He's been healthy now for 2.5 years so I'm puzzled as to why everyone's so alarmed. Please pray that the appointments go smoothly, efficiently and that there are no surprises. It also wouldn't hurt if we could be so lucky as to get into cardiology and anesthesiology on the same day!

3) My knee. I blew out my ACL and have to have an ACL reconstruction on 2/16. Greg and I are getting more anxious by the day about what my limitations will be as far as taking care of the house and kids. My doctor says to expect to be out of work for 4 weeks while I'm on crutches. Trying to fit in PT appointments with our already busy schedules seems daunting! Not to mention, Greg is spread so thin right now we don't see how he can take on another task (caring for me, the gimp).

4) My grandma. Evangeline Veronica O'Leary passed on 2/3 with her family by her side. She was almost 98 and really enjoyed Conway. Conway knew that he and great-grandma shared a special bond; they'd both had open heart surgery. They had matching zipper scars on their chests. This last year or so she's been battling painful injuries and broken bones and been in and out of hospitals and rehab nursing homes trying to get better. Most young children are apprehensive or afraid of visiting such places, especially when older adults try to talk to them. Not our Conway! He genuinely greeted every patient he passed and asked to go visiting quite often. Conway doesn't grasp the fact that we're not going to have those opportunities any more. Today we went to her apartment bldg. to celebrate her life with the other seniors she befriended and he kept asking to go up the elevator to her apartment to see her. He knows she lives with Jesus now, and that she's all better, but I don't think he really gets it. He still prays every night for her and that her bones will heal and she'll get well enough to go home. We just keep telling him she IS home now, but her home is in heaven.

As I said, these "problems" are so very minor compared with some. We are so grateful to all of you who still keep up with us and our journey. We hope and pray that God continues to reveal himself to us through your thoughts and prayers.

January 2012 Update

Some of the photos I promised...
MK had her first week of school at the Academy of the Sacred Heart. It seems to be the perfect fit for her and the answer to our prayers! Her teacher sent several pics. Here is one from recess.


And Conway is doing much better with keeping his glasses on. He had just started getting used to them and the frame broke! We got them fixed and he's back to looking sharp!


In mid-December he sang in Assumption Preschool's Christmas program. Even though he only attends in the afternoons most days and the rehearsals were in the mornings, he learned all they lyrics well. He LOVES to sing. Here he is in his dressy duds.


We also attended school's Breakfast with Santa for the obligatory photo with the jolly fellow. Karsten wanted nothing to do with him (or, as I've mentioned before, ANYone else besides parents and grandparents), but the kids had fun. Conway told Santa what he wanted for Christmas and then as soon as he got down off the stage he asked me where the table tennis set was. He actually thought it would appear then and there. I had to explain to him that there was a waiting period and it wouldn't be until Christmas morning that he'd be seeing the present.


...and of course there was Christmas morning. Conway got is still big into bowling so that was the prevailing theme yet again for him. He got a new piggy bank,

and his favorite, an automatic return bowling lane!


As always, thanks for looking in! We are so blessed to have so many people thinking of and praying for us and our children.

End of Year Update

With 2011 coming to a close I thought I'd take a moment to fill you in on our dear Connie and the rest of the family. He's healthy as of this moment (actually the healthiest in the family---half the others have strep!) and has been having a pretty good run. He was just prescribed glasses again... he had them for a brief time when he was very young. He looks just dashing in them. He knows he can take them off at night and if he's napping so he asks for a nap constantly now to try to get some time sans specs. Of course he's not really falling asleep for the most part, little devil.

He had a fabulous Christmas and absolutely LOVES his automatic bowling lane and table tennis set.

He saw his oral surgeon again today and the date was set for the extraction of that supernumerary tooth. It's going to come out on March 6, 2012. We'll go back to see him again in late Feb. for a physical and to meet with the anesthesia team, but it should be pretty straightforward. Please pray that he will be in top health when the time rolls around for this procedure and that all goes smoothly.

Mary Kathleen has been having daily migraines and stomach issues which we think are related to some anxiety-type issues. She's quite the little worrier and is easily overwhelmed. Please say some prayers for her as she prepares to transition to a new school in January. It is one where we hope she will be able to find her voice.

Karsten is a joy, as usual. He still dislikes most people that are not in his immediate family and grandparents. God help the little old ladies that smile at him in the check-out line. He scowls at them until they look away! He's been singing his ABC's and other nursery rhymes and LOVES to throw his food down to the dog.

Cece is starting her final semester in elementary school. She's a great student, as evidenced by her latest report card. She volunteers to serve at mass and is still involved in the girl scouts.

Greg's business is undergoing some big changes and we are both filled with some anxiety over the future. Please keep him in your prayers at this time, that he would continue to seek the will of the Lord in his decisions, and that he be able to turn over any fears whenever they present themselves.

I promise I'll get some pictures up soon! Thanks for thinking of us!

Ann Arbor Visit

Conway, Mookie, my dad and I flew to Ann Arbor for a quick weekend getaway to tour the new C.S. Mott Children's Hospital. We were invited to the Creator's Preview since Mary Kathleen made a clay tile that was used to decorate the interior of the new building. Her bunny tile that she made in Conway's honor back in 2007 is at the check in desk of the Michigan Congenital Heart Center. To access the photos, copy and paste this link into your browser. From some reason it's not letting me link it. http://www1.snapfish.com/snapfish/thumbnailshare/AlbumID=3842718012/a=97017826_97017826/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/ It was the first time for the kids to fly that they remember. The last time was that 2007 surgery trip.

The kids really enjoyed the trip, especially going into the O.R. and playing with the sink the surgeons use to scrub in. They got to see the Physical Therapy gym, indoor playground, Ronald McDonald house, therapy dogs and so much more. One floor had a life-sized game of "Operation" and Mookie was quite skilled at removing the pieces without making the buzzer go off!

It was nice to go for a good reason this time and not a scary one. We didn't even go near the old hospital building. I really didn't want to conjure up any of those old feelings and I figured it was a time to celebrate and not relive the pain of the past. Hopefully the next time we have to go for a surgery we'll have this experience to look back on and go with positive feelings.

Extra tooth update

Conway had a follow up with the oral surgeon today. Dr. Noble repeated his x-ray and determined that it is time to get that tooth out. We go back in a month and will probably schedule the outpatient procedure for sometime over Christmas break. I wish it didn't have to happen at all, but feel reassured that all will be well. The doctor said that by day two post op he should be back to himself and he may even be able to save the two front baby teeth.

6 Month Cardiology Check-Up

Time has flown by. I can't believe it's been six months since we last saw our friends at Mercy Children's Heart Center. The whole staff couldn't get over how great Connie looked and how grown up he appears now. It must be the spiky, gelled hair-do. Conway went in late Thursday afternoon after waiting all week. I had told him about the appointment on the Sunday prior and he squealed with delight and asked/reminded me every day leading up about the visit. He happily went through all the assessments and answered questions when asked. It's fun to see them involve him more in his care now that he's older. I can only imagine how I'll feel when he's a teenager and they'll discuss it all with him and I'll merely be a spectator.

His pacemaker report showed that he's got about six years of battery life left on his current generator. This is great news! I am not sure without going back and looking at old posts, but I think the last time this was checked it showed 4.5 years. That means it's added energy! Dr. Bromberg commented that he's never seen one go down this slowly before. How awesome is that?!

After his echo was reviewed, we learned that there has been no change since the last one. He still has leaky valves and obstruction/narrowing through the RV-PA conduit, but it hasn't worsened and it's well tolerated at this point (no RV or LV dilation, no symptoms). His tricuspid valve is the leakiest, but since his anatomy is so weird, it's actually in the pulmonary circulation and therefore doesn't affect his heart function much. The trouble with it being in the pulmonary circulation is that his conduit is obstructed as well. In essence, he's pumping against obstruction AND the blood is regurgitating back through the leaky valve, further limiting flow into the lungs and creating more work for his RV.

At this point, we are barely increasing his two heart meds, Enalapril and Aldactizide (just to keep the dose accurate for his current weight). We'd like to eventually take him off of the diuretic since we're not convinced he needs it, but the last time we tried that he gained a few pounds rather quickly due to water retention. Needless to say it's not worth it to us to risk that again. Why mess with it if it's working, right?! We'll send in a pacer check over the phone again in three months and he'll be seen again in the office in 6 mos just to keep an eye on that conduit. Maybe Connie will be one of those lucky kids whose conduit that was placed in infancy lasts until he's 8 or 10 years old. Wouldn't that be amazing? We were first told that it would last him anywhere from 3 months to 3 years. It's already been 4 years and Dr. Bromberg told us it could be YEARS before it needs replacing.

We went over lots of issues, including development and diet. Dr. Bromberg is amazed at his speech/language and cognitive abilities given what he's been through. Connie was disappointed to hear that he needs to lay off the hot sauce, but he's been a trooper about it and hasn't had a drop since the appointment because "Dr. Bromberg said too much hot sauce is not good for my heart." (it's loaded with sodium... plus, it's just weird for a kid to eat hot sauce with every meal/snack).

Thanks to everyone who continues to pray for our boy. He brings us such joy (most of the time) and is a living testament to God's grace, mercy and miraculous power! We are so grateful he is doing so well today and ask for prayers for continued good health and happiness.

School has started... and so have the illnesses!

Connie's first day of PK4 was Aug. 17th. When we went to meet the teacher night he was especially excited about the pretend play area and making pizza. Since starting he's talked about the workbench and bowling. He seems to like his new teachers (all 4 of them). He's also attending Assumption's Preschool program in addition to the three mornings a week he goes to United Services. That transition was a bit rocky at first, due mainly to the fact that my classroom is connected to his classroom and he had some trouble understanding the boundary that first day. Since then he's done fine. It's a long day for him, but he seems to be outgrowing naps anyway.

Last Friday he wasn't acting himself and looked very sick. He had four immunizations on Thursday so we thought he was just having a reaction to the shots (after we panicked and thought it might be heart related... it's a reflex, can't help it!). We sent in a pacemaker tracing just to be sure and it looked fine. Saturday morning he woke up feeling great. Same for Sunday. Monday he went to school and seemed okay but at soccer practice was he barely participated at all. Early Tuesday morning (1:30am) Greg heard him wheezing loudly so he ran in to find him sitting up in bed struggling to breathe. He woke me up to get Connie a breathing treatment going while he called 911. By the time the EMT's got there, he was stabilizing but they felt he needed to be seen and they suspected croup. They were right. He was diagnosed with croup and given a dose of racimic epi and monitored for a few hours. He slept a lot on Tuesday but was ready to go back to school today. This afternoon when he got off the bus the driver said his teacher told her that he'd been complaining of a headache but still participated in activities. Mookie has been home sick from school herself these past two days with headache, sore throat and barky cough as well. I guess they both have a similar virus. Now tonight Karsten started up with a low-grade fever. I'm so afraid this is going to be a very long winter if it's already starting!

In better news, we are on the heels of a couple of big milestones at our house. Last Saturday and Sunday (8/27 & 8/28) were the anniversaries of his two open heart surgeries. His mitral repair and ablation was 8/27/09 and his big repair, the Rastelli-Senning double switch, was 8/28/07. Can you believe we've been on this journey for over four years?! Seems like 10 sometimes, but other times it feels like just yesterday. We took the family to Connie's favorite place on Saturday, Brunswick Zone. He played skee ball to his little heart's content. Then we went to Grandma and Grandpa George's house for a cookie cake and ice cream. He topped off the fun by watching some DVR'd episodes of Max & Ruby at their house. Saturday was fun, but Sunday was divine-literally. He started the morning at 8am mass where he received the sacrament of Anointing of the Sick (they do it every six months and it just happened to fall on the anniversary this year!). Then we went to the 1st Annual Children's Heart Foundation Heart Walk around Creve Coeur Lake and ran into some of the SLCH staff. Charlotte talked to us about camp next year. It's so unbelievable to me that next summer he'll be old enough to go to heart camp, Camp Rhythm, as a mini-camper. Those events really made the day special and memorable.

General Update and Swimming

Just wanted to pop on and tell everyone that Connie is doing well. It's been a little over a month since the last update so I thought I'd pass on a few new things about him.

He is tolerating the heat far better than he ever has in the past. Everytime we're out and about I think to myself how "we couldn't have brought him to this last year" or "how miserable he was last year at this".

We took him on his first "train" ride recently to Union Station via the MetroLink. We ate lunch at the Hard Rock Cafe and fed the fish. He loved it!


July 4th has come and gone and even though the parade was a little rainy, he had fun for most of it. Patience is not his strongest skill and there was a lot of waiting. Waiting for the floats and candy. Waiting for the fireworks to start. This year he was also brave enough for the rides at the carnival AND the fireworks. He was very disappointed that he didn't meet the height requirements for most of the more thrilling rides so I've convinced him that certain foods (fruits and vegetables) will help him grow bigger so that he can ride them soon.

Connie has developed a passion for the water. Last summer he would barely let go of the sides of the pool and never even think about putting his head in the water. This year he is jumping off the side and going under. He can even jump in and swim under water across the pool! His favorite thing to do in the pool is to have Greg throw him in. He's so fun to watch. We went to Raging Rivers earlier in the week and he even did the water slides. His favorite activity there was the giant wave pool.


It seems like summer is already winding down, unfortunately. We got a postcard in the mail from his preschool and he'll be attending on M, W and Th mornings. He's all set with his James (from Thomas the Tank Engine) backpack and he chose a green binder to be his portfolio. We put a Thomas cover on the binder and he's excited to ride the school bus again.

Soccer has kind of come to a stand still. The last two weeks have been cancelled due to the high heat so hopefully it'll cool down here enough soon that he can get back out there. Practices for his fall team at Assumption will likely begin after Aug. 1.

First Soccer Game

Connie played in his first game last night. Turns out he was not put on his friend Leyton's team, but he didn't seem to mind. Leyton was playing on the field right behind ours and at one point during the game he turned to Connie while they both sat on their respective benches and said, "You're on the wrong team!" Connie got out there and ran after the ball. During his first attempt, he got knocked down and decided he needed to sit on the bench. I think he most enjoyed drinking from his Thomas the Tank Engine water bottle. He went back in a few more times and even had to take a potty break at half time (because he liked the water bottle so much!). He got a snack afterward and everything was great. Go Orange!

Make video montages at www.OneTrueMedia.com

Last Day of Preschool and Soccer News

Conway attended his last day of preschool for this school year. He and his classmates celebrated by wearing tie-dyed shirts that read, "508 Rocks." He was a pretty sad when he got to school. Not because he was being sentimental, but because he didn't want to change into that shirt. He had worn his beloved bowling shirt today and was not happy about taking it off. I convinced him to leave it on long enough for them to take a class picture and by that time he forgot and wore it the whole morning! He also got to jump in a bouncy house and have a beach themed party time in the classroom. He had a great year. Looking at his portfolio reminds me of just how much he's grown these last 9+ months.

Now that he's off school, he can focus on fun things that he didn't have much time to do during the school year such as visiting the library and aggravating his sister. Story times for his age group fell on mornings when he had preschool so it'll be nice to get back to the library for some activities this summer. And now that he and MK are going to be with each other all day, every day, I'm sure he'll find new and interesting ways to bug her! It's already starting, unfortunately!

The coolest (well, technically probably the hottest as in warmest) new thing he's going to be introduced to this summer is SOCCER! That's right. Our boy is all signed up to play soccer. It's a very recreational league of 4 year old's and it's coached by a friend's dad. This makes me feel better because he'll let Connie sit and rest as much as he wants. Or dig in the dirt, or pretty much whatever the kid is up for. Dr. Bromberg even went so far as to say he thinks it would be a great experience for him to be with his friends and maybe even make some new ones! I am ashamed to admit it, but I have struggled for awhile now with feeling like Connie will never fit in with the other boys if he doesn't play sports. I know it's ridiculous, but I can't help but see the friendships that other kids in catholic schools have because of their unity on the field, in church and in the classroom. That sense of community and togetherness is the main reason we chose Assumption for their school so I have just been worried that if he doesn't play soccer like the other boys going into kindergarten he'll be left out and never accepted or something. Having said all that, he may play one game and hate it. He may get too overheated, or just not be interested or we may deem it too rough for him and just be uncomfortable with the potential risks posed to his pacemaker and wires. And that's okay. It's totally okay. It's not like he's ever going to be an Olympian. In fact, we were told that in our very first conversation with Dr. Bromberg on March 5, 2007. He said that once he had his double switch, he would expect him to live life like any "normal" child, but would not reach the Olympics. He then reminded us how few healthy-hearted athletes attain that level in their sport. We'll for sure be taking some video at his games and post it here. I am not sure, but I think his first game in this summer league is in just about two weeks. I can't believe that two summers ago he was in pretty bad heart failure and now he's running around and dancing like crazy! I don't know why we've been so blessed, but I'm going to continue to give the glory to God and try to stay ever-grateful.

Heart Walk 2011 and General Updates

It's been a month so I thought we'd post some recent pics and give you a glimpse into the world of Conway Beckemeier. I say that because he's big on spelling his full name right now. He also loves to sing. He sings constantly, especially when I'm on the phone or talking to someone. And at those times he even sings louder. Fun! He sings songs he hears on the radio (JoyFM), songs from church, songs from preschool and songs Mookie plays on the piano. The only thing is he has a tendency to make some errors on the lyrics. We are in stitches nearly every time he's learning a new song. The boy still loves hot sauce on everything. He eats Frank's RedHot on his breakfast sandwich and dips most everything he eats into it. He suddenly has started to LOVE being outside. I think a new swingset may have something to do with that! Even on the hot days we've had the past couple weeks he's wanted to be outside. This is very new for him. We're hopeful that perhaps the improvements in his mitral valve regurgitation and his decreased heart size will help him tolerate the heat a little better this summer. He can climb up the 7' rock wall and climb the rope ladder all by himself. The most impressive change in his development comes in the way of his social skills. I am so surprised and glad to see him initiating interactions and really branching out. I guess it's so different for us because his older sisters are both so painfully shy. At the park he walks up to other kids his age and asks them to play and then plays well with them. At school his teachers report that he and the other boys "clown around" a lot and are very silly and that he's got a pretty decent sense of humor. Out in public he greets people and when he's spoken to, always gives an appropriate reply. He wishes other women 'Happy Mother's Day' on his own. When Mary Kathleen comes home from school he asks her about her day. He's thoughtful and loving (most of the time) and funny and honest. We LOVE his personality!

Yesterday was the heart walk. It was a dreary, chilly day but we had fun seeing everyone in the Heart 2 Heart group and meeting David Atkinson in person. He works with Conway's Uncle Geoff and he participates in the heart walk every year. He asked us if this year he could use Conway's story in his fundraising efforts. He also pledged to personally 50% match what he was able to raise. He ended up raising $16,825 and was the top individual fundraiser for the walk this year. He shared with us that this was the most he's ever raised and he felt Connie's story was a big reason why. He gave Conway his award medal and posed for a picture with him by the Stan Musial statue. We were honored that our son has touched others to be so generous with their gifts, and we hope that those funds will help the American Heart Association further their mission of "Building healthier lives, free of cardiovascular diseases and stroke."
2011 HeartWalk Memorabilia

Conway with David Atkinson of RGA, top individual fundraiser for the American Heart Assoc.'s Walk... raised almost $17,000 by sharing Connie's story with his family and friends.

Connie showing off his red "survivor" hat

Foam heart from Children's Hospital

Connie and Mookie and me standing behind home plate at Busch Stadium

My 6 year old daughter and 96 year old grandmother on Mother's Day

Downtown before Cards Game

Daddy and Connie at the Cardinal game


During a fundraiser for Conway's school called Walk with US


Easter Egg Hunting

Dyeing Eggs

Future Plans???

Just a quick update to tell fans and loved ones what Connie said this morning during mass. During the homily he asked me if, "When I grow up like Fr. Joe can I stand on the steps and talk and the people will listen to me?" Little does he know that since we found out we were having a boy I dreamed of him one day joining the priesthood. He was so cute!

Important Meeting

Conway with the daughter and widow of Dr. Giancarlo Rastelli at St. Louis Children's Hospital 4/6/11

Conway doesn't realize it now, of course, but someday he'll be able to look back at this picture and hear stories about the time that he met Dr. Antonella Rastelli. He's been introduced to far too many doctors in his short life but this one was different. She didn't examine him, poke or prod him. She held him and talked to him and told his mommy all about her father, Dr. Giancarlo Rastelli. You see, her father is a big reason why Conway is alive today and why he's got a great chance at keeping his special heart going strong for the next 75 years. Dr. Gian Rastelli was the heart surgeon whose pioneering work led to the surgical procedure he developed using a conduit to connect the RV and the PA in transposition cases involving pulmonary stenosis (The Rastelli Procedure). The version of the double switch Conway had done in 2007 was called the Rastelli-Senning. Here's a little bit about the life of the great doctor. We were so blessed to be able to hear her speak about him and the kind of man he was. Usually these types of physicians are "untouchables" but he was different. She shared many excerpts from his own letters back to his family in Italy that he wrote during his years conducting research and surgery at the Mayo Clinic. It was fascinating to hear how passionate he was for his work, and how dedicated he was even after a life changing diagnosis of his own. To think of the sacrifices those women made so that he could develop that procedure... it's just mind-boggling!

Cardiology Check-Up

We saw Dr. Bromberg this morning. All is unchanged! We go back in six months and NO SURGERY THIS SUMMER! His narrowing is not any worse than December and there is an advantage to waiting to replace it... the longer we wait, the better chance it could mean less future replacements. Praise God! Now, we just need to storm heaven for my mom, as her new artery is failing in her leg and the doctors are trying to decide what to do next. They sound like they are going to amputate below the knee. Please pray for her.