"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Tuesday, August 12, 2014

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!

Saturday, August 9, 2014

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 

   video
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.

Sunday, February 23, 2014

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.

Monday, February 17, 2014

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!

Sunday, February 16, 2014

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!