Surgery Scheduled and Facebook Page

Hello to everyone in Conway-land!  My how things have changed since the last post on this page!  For those who aren't regular facebook users, you will be happy to hear Connie has a new baby brother, Hugo.  He was born on March 15.  School just let out for the summer last Friday and the kids are loving summer.  MK is still playing tennis and is taking Geometry this summer.  She will start 8th grade in the fall.  Conway is playing golf, skiing, doing archery with DASA and will enter 6th grade.  Karsten just made his first communion, is LOVING golf this year, and will begin 3rd grade.  Frankie just graduated from preschool and will start kindergarten.  All four of them go to my school, St. Charles Borromeo, where I teach 4th grade.  We love our SCB family!  Celeste just got her driver's license and will be a senior next year.  Can you believe it?!

I'm updating today to share that it is finally time to replace his pacemaker that was placed when he was five.  He also has a bad atrial lead.  It has gotten so damaged that with any activity, his heart basically goes into atrial fibrillation.  This has impacted his quality of life in recent months so we are relieved to be getting this done at last.

We will travel to Ann Arbor on Friday, June 8th.  His pre-op appointment is at 2pm on the 8th.  Please pray for safe travels as we are taking the whole crew.  Then on Saturday, the hospital is hosting a reunion for heart center patients (this is the one we have attended three times before).  Sunday we will find something fun to do in Ann Arbor and then on Monday is his surgery day.  If all goes well, we hope he will be discharged 24-48 hours following surgery.  The plan is to place a new atrial lead transvenously and replace the generator in his abdomen.  There is a chance they will discover once they get in there that his veins are too small for transvenous placement.  If that is the case they will send us home and reschedule another surgery to reopen his chest and place the lead epicardically.  We are hopeful this will not be necessary as we'd like to see him have as much of a summer as possible.  Even with the first option of transvenous lead placement, he still will not be allowed to lift his hand above shoulder height for six weeks following surgery.  This will make swimming, golf, and summer camp a no go for him. 

Most of our updates from here on out will be via a Facebook page we created to share his status more conveniently.  You can like and follow it here:
https://www.facebook.com/Care4Conway-146862799441923/

Blessings,
Erin and Greg

Upcoming Surgery

Well today was Connie's annual heart check up with Dr. Bromberg.  It was just about the last thing to check off our list of things to do this summer.  And what a summer it was! We were as busy as ever.  Mookie played lots of tennis, including a week away from home in Urbana, Illinois at a tennis camp at the University of Illinois.  She and some friends from school participated in an art camp and a robotics camp in town as well.  She even flew by herself to Chicago for a tennis tournament! Conway had scout camps, VBS and two sleep away camps, including his first year as a "big kid" camper at Camp Rhythm.  He had lots of fun and made new friends to boot! His other big news is that his wish to go to LEGOLAND was granted and we traveled to Orlando right after July 4th for 6 hot, but wonderful days enjoying the theme parks and all that the Give Kids the World Village had to offer. 
Karsten and Frankie are doing well, too.  Kar will be starting kindergarten (primary) and finally gets to go to "Connie's school". Frankie is obsessed with Anna from Frozen and asking (demanding) for things all day long. Oh! I almost forgot.  We moved. Again. It took almost a month from start to finish, but we did it.  Hopefully it is the last time we will move... EVER! Tomorrow I am taking the kids to Dallas for a quick visit with grandparents and cousins before school starts.

Back to the appointment.  Things went great.  He is in the 94th percentile for height and 84th for weight.  All the routine questions and tests were a breeze.  We skipped the echo this time since he'd had one in January.  His pacemaker showed 2.5 years of battery life left.  However, when Dr. Bromberg came in, he shared that the lead issue we'd been following for close to the last two years is finally to a point where it needs to be dealt with.  He had us get a 24 hour holter monitor to track exactly how much his pacer is over sensing and delivering extra beats and skipped beats.  When listening, he hears an increase in the frequency, and the pacemaker interrogation backed that up.  He'll compare the holter results with last year's to be sure, and then consult with the team in Michigan that placed the pacemaker about getting on their surgical schedule to replace the atrial lead wire and the pacemaker battery itself, likely early this fall. It should take a couple weeks before we really know definitively what the plan will be. 

Thanks for checking in! I want to post pictures soon!

First Communion Sneak Peek

I took Conway to school today (on a SATURDAY... you would have thought I was cutting off his arm the way he carried on this morning) to have his portraits taken for First Communion.  His actual First Communion is April 11 (all are welcome!).  After the portraits were finished I took a few snapshots with my phone.  I think this one turned out really cute and wanted to share it.

8 Years Old Today!

Greg and I were already on our way to the hospital this time 8 years ago.  Connie entered the world at 2pm on March 3rd and has been filling our lives with a deeper love than we knew we were capable of ever since. Here he is this morning before school.  He loves all things Nerf gun and is excited to share peanut butter cookies with his class today.  This evening we are celebrating with Grandma and Grandpa at Cracker Barrel and tomorrow evening he has a laser tag birthday party with his classmates.

Prayers Answered!

Connie saw his cardiologist this morning and, after 2+ hours we left feeling quite relieved.  His exam was normal, other than a bit of a louder murmur.  His echo was unchanged from August.  The doctor is blaming the elevated CRP test on inflammation due to a non-specific virus. He really made over the fact that Conway's chest x-ray looks so much better than the last one on file.  His heart has a nicer contoured shape and everything.  He said we were absolutely doing the right thing by bringing him in, and to come back in two weeks or so if the chest pain is still present and we will consider a stress test.  Thank you so much for the prayers!

Unplanned Visit to the Cardiologist

Conway has not felt himself the past week and a half or so.  Especially concerning are reports of chest pain, mainly during exercise in P.E. or when wrestling with Karsten at home. He looks pale and has cold extremities. We have done all we can do to avoid seeing the cardiologist, but after results of labwork came back yesterday, the pediatrician's office wants him seen by Dr. Bromberg today.  So far here is what we know: Chest x-ray is normal, CBC red/white blood cell counts are normal, pacemaker check was normal, holter monitor last week of Dec. was normal.  He had two labs come back funny yesterday.  One was the sed. rate and the other was the C-Reactive Protein test.  It was high at a value of 13, where 0-1 is in the normal range.  This indicates inflammation.  We are unsure as to the cause.  Something minor like a virus could possibly explain the result, but he has had no fever and blood cell counts don't indicate he is fighting infection.  This test is used to measure risk for coronary artery disease, and given the chest pain he's been experiencing, the pediatrician did not feel comfortable dismissing this lab result. Please pray for wisdom for the doctor today as he evaluates Connie, and ask God to provide Greg and me with peace as we watch the clock until the appointment.  My guess is that they will do an echo and possibly a stress (treadmill) test.

More EXCITING News!

This came via email today!

It is pretty early in the process so we don't yet know all the details.  What we do know is that Conway is going to be a "wish kid" and get to make a wish to either go somewhere, meet someone, be something or do something.  When we told him he was getting a wish (a total surprise for him) and asked him what he would want if he could pick anything in the world he replied, "Well, there is this Angry Bird toy I would like." I can't wait to see what he comes up with!

Overdue Update

February! That is the last time I posted anything on this page!!  That is too long!

Connie is doing well.  He just saw the cardiologist for a regular check up and things are looking stable.  His pacemaker shows 2.5-3.5 years of battery life left and his function and numbers all look excellent, unchanged.  The doctor is happy to hear that he is taking part in activities such as archery, golf, tennis and swimming.  He won't have to go back for a year as long as he looks and acts healthy.

this poster makes me chuckle. most patients at this office have a heart that looks NOTHING like this, lol.

Dr. Bromberg, our fav!

He was also excited to hear all about Conway going to his first sleep-away camp this summer.  Connie spent a week at Camp WeCanDu, held at Babler State Park in St. Louis County.  He went kayaking, visited the Magic House, swam, did archery, martial arts, SCUBA diving and more! He loved it.  I swear, this kid was made for camping.

first time scuba diving

Chocolate sauce water slide

after falling out of his kayak

Kelly, director of Disabled Athlete Sports Association, wrapping Connie in bubble wrap at camp

As soon as he got home from there, he attended a cub scout day camp.  Then we were off to Ann Arbor for the Congenital Heart Center Patient Reunion that is held every other year. Just like in 2012, his favorite part was dunking Dr. Bradley!

Big Bird was about the only "kid friendly" thing at the old Mott Hospital. He was moved over to the new one in 2011. 

Taking his best shot at Dr. Bradley (making a run for the target)

July was a busy month, too! We went to Destin to visit Grandma Marybelle and see the beach for the first time since before Conway was born.  He absolutely LOVED playing in the surf, and just got pounded by 

  

waves for hours.

At the end of July Conway attended Camp Rhythm for his third year of heart camp.  He is now officially going to be an overnight camper next year.  I think he is ready!

Needless to say, it has been a whirlwind of a summer.  And that was just for Connie! The other kids stayed busy too.  Mary Kathleen played tennis at least 4x/week, competed in Junior Team Tennis and earned the chance to travel to KC to play in the JTT MoValley Sectionals. She also went to sleep away camp (Camp Ondessonk) for the first time, in Ozark, IL.  Additionally, she attended several high school camps for tennis, track and volleyball. Karsten even tagged along for a week of vacation bible school with her. Karsten played t-ball this spring and summer and seemed to enjoy it.  He is signed up for PK soccer this fall so we will see how that goes.  Celeste finished out her club volleyball season in May, played spring softball and continued to work out at the gym three times/week.  Greg went whitewater rafting in Tennessee with five buddies and I got to see Las Vegas for the first time in late July when I went there for a math conference. I even won $13.65 on a penny slot machine! All in all, I feel like we packed more in this summer than ever before and we are so grateful to God for the ability to enjoy traveling and spending time together as a family, without much worry about Conway's health. Frances is growing like a weed and the sweetest baby ever.  She now says Dada, Mommy, baby, bye-bye, night-night, happy, and makes the sing songy sounds for uh-oh and thank you, but doesn't yet have those exact words. I am surprised she has any words given how we all jump whenever she motions or mumbles for something. :)

Before you know it, we will be posting back to school photos of the kids.  Karsten and Celeste start 8/13. Connie and MK start 8/20.  I go back 8/12 and am moving to 3rd grade (from Pre-K).  I am over the moon excited at this opportunity and have already been working on getting things ready for my my new students.
Thank you for the continued prayers.  We are in a very good place health wise and are not taking this for granted.  Several of Conway's heart friends from camp or that we know online are having procedures and surgeries this summer/fall and we ask that you pray for them as well, especially Hailey, Holden, Angela, Grant and Maggie.

BNP Results

The doctor emailed late last week with results from Connie's lab work. His pro-BNP, the test which measures heart failure, was elevated.  Normal is below 124 and Connie's was 180.  Last summer his BNP was 18.6, so on the surface this looks like a concerning development.  However, given the exam and echo results the doctor is not worried.  He also discovered that these two labs were slight variations, so the numbers aren't comparable, unfortunately.  There are three forms of BNP tests and different laboratories draw different tests by default apparently.  The more reliable test in the field today is the pro-BNP, which is what he had drawn last week.  Bottom line is we will check this level again in three months and if it continues to rise above 180, we will likely make changes (go back on meds or something), but at least we will be able to compare apples to apples.

Great Report

We braved the icy roads (which weren't very bad by 9:45am) to make the trip to Mercy and see our favorite cardiologist.  Everyone was so happy to see him and couldn't get over how much he'd grown.  Seriously, like four people in the office remarked about how old and tall he looked.  After he got weighed and measured, it was official.  He's grown 7 (!) inches in 18 months!

Nurse Kelly did his vitals and caught up with him on what he's been feeling like.  He said P.E. is hard and that he gets tired, but that is nothing new.  I actually think he is more tired from his physical/muscle delays and weakness than he is from a cardiac standpoint. 

Connie waited patiently to get called for his echo. Here he was practicing taking "deep breaths" for the doctor.

He had his echo and had the added bonus of having his echo analyzed by an echo tech student along with Dr. Bromberg.  Doctor told the student that if he could read Connie's, he could read any echo!

Next up was the doctor visit.  He was getting a little squirmy and bored by this point, but was friendly as usual.

The doctor was pleased with his unchanged echo and thinks he looks great.  He ordered some lab work to check his BNP level just to be sure it isn't creeping back up now that we're off of the Enalapril.  He said to stay off of it for now and he'll see us again this summer just so we can get on a yearly summer visit schedule.  He's going the last Monday in July.We didn't do a pacemaker check this time since we just sent in a reading in early January, but we'll continue doing that every three months and at the July appointment he will interrogate again.

We went downstairs for the blood draw and our superstar didn't even flinch.  He is really growing up! In the past, he has always sat on my lap for blood work but not this time.  He just hopped up in the chair and rolled up his sleeve!

We'll update when we get results, but are pretty ecstatic that once again, God has blessed us with a wonderful report and our Connie's heart keeps on beating strong.  Thank you for your prayers!

Cardiology Appointment Tomorrow

I just realized how very long it has been since I've posted an update on here.  I guess posting so many quickie updates on Facebook really makes this almost seem redundant.  That said, I'll try to recap the past few months before asking for prayers for Connie's upcoming cardiology visit.

Waiting for a turn to use the carving knife

School is going well for all the kids.  After Christmas, Connie seemed to have some issues with getting back into routines and maintaining focus, but that seems to have improved slightly.  It is hard when every week has either or snow day, early release due to snow, holiday or faculty meeting scheduled. MK earned straight A's and won the 3rd grade spelling bee.  She finished in 2nd place in the school-wide bee.  I was told by several colleagues and administrators that her presence was really quite impressive, especially for her age.  Confidence is something she has really had to work on, so this was an amazing feat for her.  At the end of February, we will once again have the opportunity for parent teacher conferences, but in these conferences, the meeting not only includes the student, but is led by the student.  This will be the first time Conway will participate in such a way.  It will be interesting to see and hear his take on his learning and how he is doing at school. Speaking of snow, here they are enjoying the first snow day of the season.  Snow has got to be such a frequent occurrence this year, they don't even ask to go play in it anymore :)

thrill seekers!

Karsten happily playing in snow

Connie recently started swimming lessons with D.A.S.A. He gets 1:1 lessons from OT students at Wash U. with a physical therapist supervising.  We're hoping it will be good to strengthen his core muscles, in a fun way.

Conway joined the cub scouts this past fall and is a Tiger Cub.  He will soon move up to the rank of Wolf.  He enjoys doing things with his den and has participated in a lot of events already, such as Pinewood Derby, family camping,  seeing a professional hockey game, raking and composting for the city, and much more.  One thing I love about his scouting experience is the religious aspect of it.  His den and pack take every opportunity to enhance the program for the boys by giving them the chance to earn religious awards and learn as much as they can about saints and their faith. 

Connie and Daddy at the Science Center with scouts

Working together on Pinewood Derby car

A new heart parent support group has merged with our existing one here in StL.  It is called Mended Little Hearts.  I have been attending the meetings and Connie and some of his camp buddies have come along to a few.  We're told that the parents of young babies, the ones in the throws of heart disease, really gain hope from seeing the older kids doing so well.  During Congenital Heart Defect Awareness Week, his school had a "wear red for awareness" day.  Connie was asked to read facts and figures about congenital heart disease over the school's PA system, and money raised during upcoming Mission Day will go to support research grants given by the Children's Heart Foundation. 

Sporting his red for Heart Disease Awareness Day at school

MK is playing volleyball and tennis right now.  Karsten started gymnastics through the parks and rec department.  They are all having a good time and learning a lot.  Piano fell by the wayside, unfortunately.  It was just too hard to make the drive back out to O'Fallon every week in traffic, especially considering the kids weren't practicing. Celeste is playing club volleyball and busy with scouts and band.


Baby Frances is growing like a weed.  She is 10 months of pure joy.  Literally the happiest, most content baby ever known (to us, anyway).  She is pulling up now and it won't be long before she is out climbing on the swingset with the rest of the kids (if this winter ever ends!)!

Crazy driver!

10 months :)

Now that you are somewhat up to speed, we are asking for prayers for Conway as tomorrow is his check up with the cardiologist.  The plan is to do an echo, pacemaker check, etc.-a full work up.  He was not due to go back in until late March, but in November the cost of his heart medicine went from $20/month to $687/month so his doctor wanted to see if he could do without it.  He said he would do a 2 month trial off of the drug and then look him over to see if he could stay off of it or need to be put back on it.  We are actually feeling like a check up will help to reassure us because the last three days he has put himself to bed at least 1/2 hour early and one day even took a three hour nap.  Unusually tired is never a good sign for a heart kid!

1st Grade!

 Look who photobombed this pic. Silly Karsten!

 No more peter pan collar for my big girl this year. She's growing up so fast! PE shoes are a size 5.5 Women's!

Today is the first day of 1st Grade for our boy!  Mookie is starting 3rd this year and is so thrilled to have the teacher she wanted and be in class with three of her best friends.  Conway is happy that his best friend is in his class, but not very excited about the start of school because, "There's no rest time in first grade!" I told him I'd have him come down and explain to my 4 yr old class the benefits of it since none of them seem to want to rest :)  I have met with his new teachers and nurse and they are all up to speed with his current health status. 

We still have not gotten the results of the holter monitor and I have been so busy with the move and getting settled here that I have not even gotten his disposable cameras from Camp Rhythm developed yet! I am behind and the school year is just beginning. This is not a good sign!  He loved camp again and even briefly made an appearance in a news story about it.

We are going to a meeting tonight to learn more about Cub Scouts and see if that is an activity that would interest Connie.  I think it would be good for him since it is not necessarily athletic and will give him something to do besides watch TV/play Xbox.  He is so hard to get up and get moving and it is hard to tell if it is just the way he is or if there is a reason for it.  Unless you take him to a bowling alley or putt putt course/driving range, he doesn't want to get off the couch (except to jump on/off it and wrestle on it with Karsten).  He is still taking piano lessons and seems to enjoy them.  He says he wants to play tennis like Mookie, but I don't think he is physically ready yet.  His coordination and strength are still pretty immature.

He continued with his occupational therapy this summer.  His therapist doesn't travel this far east so they were going to assign a new therapist.  We thought it might be time with the start of school to give him a little break and see how he adjusts to a new classroom and schedule before adding more to his plate.  He has been napping most afternoons if we go anywhere in the car and is probably going to be tired after a full day of school.

And not to leave out Karsten, he started preschool last Thursday and likes it. he cried briefly the second day, but seems to adjust pretty easily to new situations.  

Baby Frances is the happiest baby ever and is our joy.  She is beginning to roll over and screech like a pterodactyl. We just can't get enough of her!

We just had some photos taken and this was the best we could get of everyone!

General Update

No earth shattering news in this update. It is more of a post for our own records but you are welcome to read and stay in the loop.

Connie has been generally well this summer but I have had a nagging feeling he's a bit off for about the past month. He is sleeping more, eating less, whining more, playing less... just not himself. We have seen this in the past when his heart is out of rhythm so we called the cardiologist to see if he'd take a look. I know when Greg notices a difference it isn't just my imagination. We went in last Thursday for a pacer interrogation, chest x-ray and exam. His heart checked out perfectly. Dr. Bromberg understood our concerns and patiently explained that Connie is very stable right now, as hard as it is to believe, and we should expect him to remain that way. Seems tough when you are so connected to the rest of the "heart world" via social media and there are a lot of kiddos struggling right now. He urged us to see the pediatrician for some lab work and another exam to test for a possible viral infection of some sort. He ended up getting a very bad reaction (again) to a mosquito bite Thursday afternoon so the doctor wanted to take a look at him anyway. His left foot and leg swelled so big he couldn't put a shoe on or walk at all on Friday. That little bite earned him 10 days of antibiotics and 5 days of steroids. We got the lab results yesterday and they were all normal. They even checked a BNP at Dr. Bromberg's request and it was the lowest it has ever been recorded in him (18.6)! BNP is the test that measures heart failure. When he needed his mitral valve repaired it was over 7000 and after his last surgery, I believe the lowest it got was around 200-400. So this definitely seems to be a big improvement. His heart size on x-ray was also improved compared to the April 2012 film. It is now considered normal size.  I will be posting about Camp Rhythm very soon as it begins this Wednesday. He is looking forward to it. We are moving on Thursday so there hasn't been much time this summer to post pics lately. We have a few cute ones from recent boat rides on the Mississippi and Illinois Rivers. He loves swimming and tubing, but I think his favorite activity out there is napping in the cabin as the boat sways. 

**Updated 7/30/13: Dr. Bromberg emailed after getting the lab results from Dr. Davis and says he wants Connie to wear a holter monitor and get out a play quite a bit with the monitor on.  When he was interrogating the device in his office last week, he noticed that the unit was picking up "artifact" any time Connie would stretch or move his arms.  It could be that when he is running or very active that the pacemaker is sensing extra beats and getting out of synchrony.  Generally they would test this in the office using a treadmill but Connie is too small for theirs so we will wear a holter and take him to the driving range, outside to ride scooters, to the park and anything else we can find for him to enjoy that is active.  So, we will do this test next week sometime and share the results when we get them.  This should not be a big deal, just some tweaking might be necessary.  He will still be able to have both ventricles paced, but may go back to the old mode he was in prior to the generator replacement last August.

Blessing in Disguise

This post refers to the pacemaker lead issue. I'll try to keep it very simple. While I have a rather firm grasp on most things heart related, this is one area where I still feel very inadequate and out of my league. Electrophysiologists must be about the smartest people on earth.

We suspected Connie had a damaged atrial lead following his July 1st pacemaker
transmission.  This past weekend we were at a birthday party and before anyone saw the warning sign, Connie had touched a plasma tube. They can cause electrical interference and make it so implanted devices get reset to factory settings or fail to work properly. Conway instantly received a shock down his arm (likely from his metal medic alert bracelet). He cried and was pretty shaken up for a few minutes. We notified his doctor who told us to check his heart rate and go ahead and send another transmission. He let me know Connie was okay, but the pacer was still acting up and he was going to have a Medtronic field rep take a look. They decided that there was an issue with his settings and so yesterday we went in and had it reprogrammed. Basically Connie has been rebooted and our doctor feels confident that the trouble he was seeing was indeed this sensing issue and not a fractured lead!!! He said to go on our way and we'll recheck it in three months. We are thrilled that it seems the threat of possible O.R. time in the forseeable future is now gone! Our brilliant doctor may not have been able to make this discovery without this unfortunate incident so we feel this has been a silver lining of sorts and a blessing in disguise.

As always, thanks for keeping up with us and keeping little man in your prayers. We have an AWESOME God who is always by our side.

Multiple Updates

Conway is having a fun summer.  He loves swimming and is quite the little fish.  Poor kid is allergic to most sunscreen but we have found some for sensitive skin that he does well with.  He has become addicted to watching Woody Woodpecker on Netflix.  It is funny to see him enjoy some of the same characters I remember from my childhood.  He attended a three day golf camp earlier this summer and liked it a lot.  A fellow heart mama had some youth clubs she wasn't using anymore and she gave them to him so now he's got something to take out to the driving range or pitch and putt course.   This month he is going to a gymnastics camp for a couple of days and then to the highly anticipated heart camp, Camp Rhythm.  He adores Baby Frances and of all the kids, he is the most loving and gives her the most attention.  And she just lights up when he talks to her.  The only problem is he sometimes needs reminders about being gentle and giving her a little space.  He especially loves to tickle her... when she's eating or sleeping!  He's been reading to her some and she just stares at him and laughs intermittently.  He had a check up at the dentist and no cavities this time!  He was very brave about the x-ray, too.  I think it is so scary for him because it causes a flare up of  PTSD from his early months in patient and all the things that were forced into his mouth. 

We spent a night in Kansas City at the Great Wolf Lodge, an indoor waterpark.  We figured it was ideal considering we have the new baby who shouldn't be out in the sun for long periods and for Connie who tires more easily swimming and might need to nap.  He was the first one "done" swimming both days, but he did very well climbing three flights of stairs numerous times to do the water slides. 

We also enjoyed a recent trip to the Magic House courtesy of the Missouri chapter of the Congenital Heart Foundation.  The heart families had the whole place to ourselves!  Connie loved the vacuum tubes the most.

Yesterday marked three months since his last cardiology check up and pacer interrogation.  We typically have the pacemaker evaluated quarterly via phone transmission so I sent in a carelink report.  The nurse practitioner called to tell me "everything looked good, but..." My heart climbed into my throat and all I could think of was, "Oh, no! We just went through surgery last summer and now this.  I don't want to see him miss out on anything or have anything stand in the way of a smooth start to the school year." She said that this time there is some "noise" or impedance on his atrial lead meaning it is damaged in some way.  It could be from an injury such as a fall, rough housing or repetitive movement, but it is more likely that it is just that the insulation surrounding the wire is wearing down and therefore the lead is less effective and starting to fail.  In Connie's case we are lucky because he does have an underlying rhythm of his own and if this were to happen, he shouldn't just collapse.  Theoretically, his pacer should switch modes and go into atrial sensing, ventricle pacing instead of pacing the atrium and both ventricles, which is what he has currently.  We might notice him having a fixed heart rate around 70, causing him to be rather sluggish and tired.  Dr. Bromberg said that even if the lead did completely fail, we might be able to put off replacing it surgically until he is older, as he has quite a bit of scar tissue on his heart and finding a good place on the atrium to attach a new lead would be a tough job. Conversely, placing a lead venously would compromise his vein, which, as the doctor put it, he will need for another 70-80 years. 

So, we will up our vigilance just a bit while trying to carry on as normally as possible.  I asked about sending reports more frequently or checking his heart rate nightly and was told to not go crazy and just keep doing what we've been doing, which is letting him live like a pretty regular kid.  It is a reminder, though, that he'll never be cured and just when we get out of the routine of being overprotective it seems something comes along that thrusts us back into the reality that he has a pretty messed up heart.  If you would pray that this newest discovery maintains its "let's just keep an eye on this" status, or better yet, clears up by the next transmission, we would really be grateful. 

Last day

Today was the last day of school for Conway and Mary Kathleen.
It was a half day. On this day there is a closing ceremony and the children are called by name to receive awards related to their demonstration throughout the year of their understanding of the goals and criteria of a sacred heart education. Connie's award was for consistently demonstrating enthusiasm for learning. We can hardly believe that 10 months ago our boy had just had open heart surgery and we questioned whether or not he was really ready academically, physically and emotionally for the primary (kindergarten)year.
Here he is today 10 pounds heavier, 4 inches taller and READING! He just brought home a reading end of unit test with an 89%. But get this... it was a FIRST grade, unit two test! We are so thankful for the education he is receiving and are so proud of all that he has accomplished. He really is a walking miracle and a testament to the power of prayer and perseverance.

Mary Kathleen's First Communion

Mookie received her First Holy Communion on April 13th. This was a day she had been looking forward to for years. I remember when she was just a toddler and she'd smell my breath after communion and ask when she was going to be old enough to get it herself. I am confident that she was prepared and fully understood what she was partaking in. Her school does such a wonderful job with sacramental preparation. One thing that made it special was that it was in the Shrine of St. Philippine Duchesne. She also had a special part in the mass. She and some classmates led the congregation in singing the responsorial psalm, "Taste and See", and you could really hear her singing out. The children each processed in with either materials to dress the altar themselves or with wheat, etc. Another really fun thing was that most of the songs chosen for the mass were songs by artists like Chris Tomlin and are played on our local Christian radio station so our family was very familiar with them and MK had a lot of fun singing them. Here are some pics from the special day. Frances' first mass MK with her 2nd class teachers MK with her best friend, Naomi MK with Fr. Sean Martin and Sr. Maureen Glavin (celebrant and Head of School)