"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

Wednesday, December 22, 2010

Merry Christmas...

...from our family to yours!

Friday, December 17, 2010

Testing and Scheduling

Conway had his EEG this past Monday to rule out seizures. Thankfully, the EEG was completely normal! Praise God!

Children's Hospital also called this week to schedule his upcoming cath. It will be on Weds., 1/5 and he will be first case of the day. His pre-op testing will be done on 1/4. The plan is to take measurements of the pressures in his heart and attempt to stent open his narrowed conduit. They will share the information with us and with Dr. Bromberg and then he will decide if it's time to share the information with Dr. Bove in Michigan. My guess is that if the stenting is successful, he'd hold off on that. If not, and the numbers look bad enough, he'll send the cath report to Michigan for Dr. Bove to review. Please pray that the weather and road conditions are suitable for these upcoming appointments, that Connie will again be "so brave" and that all the little logistics (like getting MK to school, Karsten taking a bottle while we're gone, etc.) will be able to be worked out.

Here's a pic of Connie decorating the tree. He LOVES hanging ornaments! After putting each one on over and over he says, "Beautiful!" just like Max says in the book, Max and Ruby's Christmas Tree.

Tuesday, December 7, 2010

Another Diagnosis

Conway's headaches have continued and intensified so we followed up on Dr. Bromberg's referral for a neurology consult. On Saturday, it got so bad he was going limp, getting very tired, sensitive to light and finally vomited. Dr. Davis was able to see him and ruled out any illness. Today we got in to see a neurologist at St. John's, Dr. Altman. He looked over Connie's CT scan from April, listened to his history and examined him. It's his conclusion that Connie is experiencing migraine headaches. As someone with a history of them myself, this news was devastating because I know how I suffered so with them. Dr. Altman was quick to point out that of the other things it could be, though unlikely, this is the best problem to have. The other things include the possibility that he's having mini seizure-like activity or that he's got a growth in his brain. We'd rather it not be either of those, for sure! He did schedule an EEG just to rule out any seizure activity but wants to hold off on any more testing. If Conway complains more than usual or they get much more severe, he'll schedule another CT scan, this time with contrast. Ideally, he'd love to see results of an MRI, but Conway's pacemaker takes that option away. His CT from April shows four calcifications, or "stones" in his parietal occipital region of his brain. While unable to be proven, the likely cause is his time on the pump (5.5 hours) during his first open heart surgery.

So for now we treat with Ibuprofen until the frequency increases to 2 or more times per week to the point where they inhibit his ability to function fairly normally. If that happens, we will start him on a daily maintenance drug if cardiology clears it. That option isn't too appealing though because the side effects of the drug include fatigue and weight gain. I don't think it would be good for his heart for him to carry around extra weight and my fear with the fatigue thing is that one sign of heart problems is fatigue so I'd be afraid that if he were tired, we'd just write it off as a side effect and miss a potential heart issue.

Dr. Altman quickly became a fan of Connie, just like everyone else who meets him. He had that look in his eye when he told me, "Mom, your son is really a special boy. You sure got a good one." On a side note, as we were leaving he asked, "You call him Connie, right?" I hadn't written that on any of the forms or anything! Turns out he was in the doctor's lounge the other day and ran into Dr. Bromberg and they were discussing him. At that time, Dr. Altman didn't know that the CT scan he was carrying in his back pocket and looking over was the same patient Dr. Bromberg was talking about sending his way. Anyway, it made me feel so good and confident in his care that once again, Dr. Bromberg has our boy on his mind and goes the extra mile to look out for him.

Thursday, December 2, 2010

Surprise Visit

You know Connie. He can't ever seem to go the full amount of time between appointments without throwing us for a loop. The last couple of weeks or so he's been showing some signs of tiring more easily and we were just keeping an eye on him. Well, his school has called the last two days reporting that he's been laying down and complaining of a headache and chest pains. Dr. Bromberg had a cancellation today so we got him in. Nothing seems different on exam, his sat's are high and BP, HR and RR are all normal for him too. His conclusion is that it is possible that the conduit that connects the pulmonary artery and right ventricle is narrowing and more stenotic even than it was in September, when the echo showed it was narrowing more. He said it's time to get some better numbers and measurements to see what the hemodynamics look like in there and unfortunately, that means a cardiac cath is necessary. I really have mixed feelings about this test. I'm anxious to get a clear picture of what's going on in there and see if it is indeed time to intervene with that conduit. At the same time, it's much harder to subject him to such an invasive diagnostic tool when he isn't in heart failure. In the summer of 2009, the last time he was cathed, we handed him over so easily because he was so sick and it was obvious that his little heart needed help. This time it's so much harder. Yeah, we're noticing some changes in him, but it's not like he's laying on the floor all day watching iPod movies and vomiting everything he eats either.

The cath will be scheduled for some time in January-hopefully with Dr. Balzer, the cardiologist that cathed him in April, 2008 at St. Louis Children's Hospital. If the conduit is showing the blockage to be significant, then he may attempt to stent it open. That could buy us more time before another open heart surgery is necessary to replace the conduit. Dr. Bromberg isn't sure that stenting it would be successful since it's made of gortex and not native tissue, but we'll just have to wait and see.

Please continue to keep Connie in your prayers. Ask God to give him relief from these headaches that he's always complaining of and that he remains pain-free, especially so that he can enjoy these upcoming holidays.

Friday, November 5, 2010

Another Reprieve

After two visits with Dr. Noble, an oral surgeon at St. John's, it's been decided that Conway will have his extra tooth removed at some point next summer. The doctors all put their heads together and would like to wait so that he's a little bigger which will make the anesthesia people a little less nervous and hopefully also give the tooth some time to move down in a little better position. He's fairly certain that the front baby teeth will have to be sacrificed in order to extract this one so that means Connie will be toothless in front for a few years :( Like my mom said though, at least he'll be here!

On a medical front Connie's doing so well. He's went to a kickaroos soccer day last month and has been jumping in bouncy houses at fall festivals and acting like a regular three year old for the most part. He's been to see the ped a few times lately with viruses (he gets EVERYTHING!) but has been handling them better than even this past summer when he got sick all of July. At school his teacher reports that he's now doing all the climbers-even the rock wall-to access the play equipment which is a big milestone for him (and a goal on his IEP).
Here he is climbing the big ladder up to the top of a tall inflatable slide--NEW SKILL!

For Halloween he was, you guessed it, a bowling pin. His Grandma Marybelle made his costume and it was perfect for him. He got so many compliments and a ton of laughs when he asked people, "Why didn't the skeleton cross the road?... Because he didn't have any guts." He's talking and singing constantly now. We are trying to be supportive, but I have to admit there are times I wonder why it was I prayed so hard for him to learn to talk, haha!! Five minutes peace, ya know?
Here he is with Wonder Red (Reading super hero with "word power" from the PBS show Super Why!, aka Mary Kathleen)

Monday, October 4, 2010

Are you serious?

If it can happen, it seems to happen to him! My poor son went to the dentist today and aside from the cavity starting on one of his back teeth (my fault probably for letting him eat skittles!), they took an x-ray and found that he has an extra tooth. Not just an extra that can be pulled and we go on about our business. No, this one is up in between his two permanent front teeth and has completely turned one of the front teeth 100% perpendicular to the other teeth. We've been referred to an oral surgeon who will decide when to remove it. The dentist guessed sooner rather than later, but given his heart history they may feel more comfortable waiting some. I am very frustrated right now, and feeling like Connie's had more than his share to deal with thus far in life. I can't believe I'm actually in tears over a dental issue. I think it's just the older he gets and more aware, the more it bothers me when he has to hurt. I feel so bad typing this as I know it's not true at all, but part of me feels like God is picking on Connie a little. I know, I know. That's not the case, but I just want to scream up to heaven, ENOUGH ALREADY! Then I feel guilty because there are so many who have it so much worse. Almost daily I read online about another little CHD'er losing his or her battle with heart disease and our smiling boy is not only still here with us, but he's thriving. Alright, my confession time is over for the day. Off to change the laundry.

Monday, September 27, 2010

Six Month Reprieve

Connie saw Dr. Bromberg today. He was very impressed to hear all about how wonderfully Connie's doing at school and his overall approach to life. He says that when kids are doing well heart-wise you will see them make this kind of progress and it helps to reassure you that they are doing well on the inside too. His blood pressure was normal, good heart rate and left ventricle function looked great. On the echo, his gradient was a little worse than on previous films. His heart has grown (and so has he! He's now 34.7 lbs and 39 inches) and obviously the conduit has not. It will need to be replaced at some point and we knew this. We were hoping it would be in about 5 more years or so but he estimates it will be more like within 1-3 more. We were really praying that he could hold out with this one until he was big enough to handle and adult-sized one and that may mean it would be the last open heart surgery he'd ever need. Dr. Bromberg says that still might happen and would definitely be optimal. We go back in six more months to look things over again and see if there's any difference. Right now he's asymptomatic and so there's no rush. He feels Dr. Bove would say with the LV function looking as good as it is and him not showing any exercise intolerance at this point, that we should just sit tight. So, that's what we do! Now we have this behind us and can enjoy the fall, the holidays and just being a little more normal. Thank you, Lord for hearing our prayers and continuing to bless our boy with good heart health. We are trying our hardest to make sure he knows you and knows that your love for him is more than our love for him could ever be. Amen.

Thursday, September 23, 2010

Appointment Update

Conway has had a few appointments recently and has a couple more in the next week or so. He went to Dr. Tychsen yesterday for his twice yearly eye exam and after waiting two hours he was cleared for a whole year! He's still far sighted, more than a child his age should be. They said that young children can compensate for this and as long as he's not this far sighted by the time he's eight or nine we can avoid glasses.

He's been to the pediatrician for his flu shot and to check on some bumps on his legs, arms and face. The doctor thinks they were just bug bites that got infected and as a precaution she put him on both an oral and topical antiobiotic. His lymph nodes behind his ear and on the neck were even being affected by the bites. The sores were oozing and draining and looked nothing like any mosquito bites I've ever seen! We just got word back today that thankfully, the cultures came back negative. Yesterday he broke out in a rash again on his torso. Doctor thinks it's unrelated to the meds as the rash is not hive-like. It's better today so they're thinking he just picked up "another virus".

He goes to Dr. Bromberg for a big cardiac exam including x-ray, echo, pacemaker interrogation and lab work next Monday. We'd appreciate any and all prayers for good news. He appears to be doing well but there have been times when he's been a bit off; overly sluggish and tired, excessively thirsty, etc. We'll feel much better after Dr. Bromberg checks him over thoroughly.

A week after that appointment he sees the dentist. Last time he cried and was a little scared so pray that he'll be "so brave" this time.

He's been busy going to preschool, spending time dancing to VBS CD's, riding his sister's razor scooter and riding his trike. He loves playing outside now that the weather has become tolerable. We've been having some fun on the weekends when it's not raining and cancelling MK's soccer games! We recently made our first family trip to Eckert's Farm to pick apples. The girls and I made pies and shared our haul with all the neighbors. We also went to a fundraiser for St. Louis Children's Hospital. Connie had a blast riding on the "train" at both places.

Sunday, August 29, 2010


What a difference a year makes!
After his first surgery

Post-op 2009 repair

Friday was the one year anniversary of Connie's mitral valve repair and radiofrequency ablation at the University of Michigan. Yesterday marked three years since the big double switch, in which his entire bloodflow and structure of his heart was altered. Many of you who have been following his story since that time remember what tremendous complications and setbacks he suffered in the days and months that followed. It is truly remarkable to see him today, doing what any other three year old can do. Instead of laying in a hospital bed this time of year-as he's done two of the three years he's been alive-he's swimming, kicking soccer balls on the sidelines at Mookie's games, quoting lines from Max and Ruby, counting to 30, using his manners and enjoying being a little boy. I almost cried earlier this week when his preschool teacher told me that he's "ahead of the curve in a lot of areas". She went on to say that he's the "little model of the class" and that she points to Connie to show others in the room how to do things or how to behave. Back in 2007 we were praying for God to take him and put an end to his suffering and now we are just in awe of the blessing he's been in our life. We know that his future is uncertain and we've definitely seen how quickly kids like him can deteriorate, but we try to make a conscious effort daily to soak up every special little part of him, even when he's being a stinker! Here's part of the "thank you" we sent to Dr. Bove to mark the anniversary.

Yes, he LOVES pickles and when they are gone he apparently likes the juice!

Wearing sisters rollerblades with no pants on. He's gonna hate me for this one someday!

Wednesday, August 18, 2010

First Day of Preschool '10-'11

Connie's first day was today. Grandma George drove him since today was also Mookie's first day of Kindergarten. He and I had already met his teacher and visited his classroom earlier in the week. He had a great day and the teachers have already learned how much he likes bowling as he found something on the playground that he could use for bowling pins. Some of his same classmates from last school year are with him again so that's nice. He's such a big boy! He did perfectly asking to use the restroom (no accidents, yay!) and asking for a drink when he was thirsty. They said he has very good manners (which we knew).

Thursday, August 12, 2010

Quick Update

Not much to report lately. Sorry it's been awhile since there's been an update on how Connie's doing. We've been winding down the summer mostly indoors, unfortunately, due to the high heat and humidity. We've taken a couple trips to the local pool and of course been swimming in the little pool in back too. We're really looking forward to school starting. Connie starts preschool up again next Wednesday. That is also Mary Kathleen's first day of Kindergarten. Celeste will be entering 4th grade on Monday.

Health-wise, Connie has been a bit off for the last month. He had a virus of some sort starting in mid-July. He got like he normally gets when he's not feeling right-whiny and lethargic and not sleeping well. We rode the "Is it his heart or just an illness?" roller coaster for awhile. Then he got a rash and low grade fever. His rash finally improved a week or so ago. Yesterday, a new rash started and he can't stop scratching. His pediatrician gave him some prescription antihistamine and cream for it today and we'll see how that works.

Milestone-wise, he's just conquered using the potty! He's doing so well and we are very proud. Of course the week he started potty training our washer went out, but he's done so well it hasn't mattered!

Latest Pics
Mr. Grumpy not feeling his best but managed to still be a pretty cute ring bearer for his godfather's wedding

All gussied up

At City Garden trying to stay cool

Monday, August 2, 2010

Professional Pics

Finally got around to getting Connie's 3 year pictures taken. I did them at the same time as I took Karsten for his 3 month pics. I had a little bit of an excuse for waiting so long since I did have a baby right after his birthday and by the time I was getting my head above water he broke his arm and we didn't want that cast in there now did we? At this age, his main loves include bowling, golf and Thomas the Tank Engine so that's what we did for his pictures. I wanted to always remember the joy he got from those things when he was small.

Thursday, July 1, 2010

Follow up on hair loss

Connie saw the pediatric dermatologist today for that hair loss he was experiencing a month or so ago. It took awhile to get an appt. and of course wouldn't you know that by the time the appt. rolled around we aren't seeing it much, if at all. It's certainly nothing like it was in the middle of May. She asked some background questions and determined that the cause of the hair loss was likely the body's reaction to a stressful event such as an illness several months prior. He did have Mono and croup and various other illnesses over the winter so that makes sense. The term for it is Telogen Effluvium. No more follow-ups are required. He was, as always, a good boy and very cute at the appointment.

Wednesday, June 30, 2010

Home Again, Home Again

We arrived home from Texas safely after 10+ hours in the car yesterday. We went down to visit with family, celebrate a niece's birthday and spend time on the farm. Celeste says she'd like to move to Texas now, Connie wishes to live on the farm and Mary Kathleen never wants to see another grasshopper as long as she lives! Traveling with four kids is a bit stressful. Now I know why people say they need a vacation after their vacation! Overall though it was a success and plenty of memories were made.

Cece posing before Daddy took her for a little ride on the 4-wheeler

Celeste and cousins starring in "Rockband" on the Wii

Mary Kathleen hamming it up at the pool

The boys all ready to swim. Now one just has to wake up!

Saturday, June 26, 2010

Connie Update

It's been a few weeks so I thought I'd update everyone on the world according to Connie...
Since he's three now he was able to attend Vacation Bible School at our church for the first time. He calls it "Buhcation Bauble School". It's so cute when he says it. He separated very well from us and we got reports each day that he did great. We were a little disappointed to discover that he got pooped out pretty easily there. The first day he complained a lot at school about having a headache and his teachers were concerned. He had a couple of symptoms of maybe a little something weird going on with his heart so we put in a call. Dr. Bromberg was out of town but when he came back in he was great about having us come in to give him a quick once-over just to make sure everything was fine before we left for our trip to Texas. Nothing has changed with Connie's heart, but he explained that this heat we've been experiencing is hard on everyone, and especially Connie. We held off on giving his diuretic to him until after VBS the other days and that seemed to help some. That way he was plenty hydrated while he was there. Unfortunately for him we are vacationing somewhere even hotter than home! He's spent most of the time either in the a/c or in the pool! My brother has a playground and park right behind his house but Connie hasn't had a chance to visit it yet because of the heat. Hopefully we can get him out one evening if it cools off some.

At home, Connie has been swimming in our little 3 ft deep backyard pool and cautiously enjoying himself. He usually says he doesn't want to swim but we put him in anyway and he ends up having a blast.

Hope everyone is enjoying their summer. This summer is such a change from last summer when everything hinged on his health. Don't get me wrong. It's still on the forefront of our minds and does affect our plans and things, but it's not a critical level of concern like it was last year at this time. He had just been discharged from the second week-long stay due to arrhythmias and had been started on a pretty significant regimen of heart meds. We are so thankful that life has resumed to a much more normal level and we have more normal concerns like where to go on vacation! Thank you, Lord!

Monday, June 7, 2010

ICU at the Zoo

Children's Hospital invited all the kiddos who spent time in the Intensive Care Unit during 2009 to the zoo for a day of fun. We got lunch, entertainment from the clown docs, a photo slideshow of all the kids and free passes to a zoo attraction. Connie chose the train. He loved the fish, especially!

Sunday, May 30, 2010

Recent Pics

Things seem to be settling down a bit here but there's always excitement. Greg is having two hernias repaired next Thursday, Connie is set to get this soccer ball cast off on Wednesday and possibly go to a short cast or just a brace and I'm still applying and interviewing for teaching jobs for next school year. Cece got glasses a few weeks back and practically looks like a teenager now! With summer comes lots of parties and events and we've been busy lately. Last weekend was Karsten's christening and this weekend we've been to the zoo, a BBQ bridal shower for Connie's godfather's upcoming wedding and a nephew's christening. Here are some cute pictures we've taken of the kids... Thanks for looking!
The girls enjoying the pool--girl in middle is neighbor

Karsten loved the water!

Karsten (left) and Cousin Jack

Mookie still loves her bunnies

Cece got smiles out of Karsten while waiting in the parking lot

Showing off his latest injury--"I got skinned."

Cousin Zoe (left) and Connie enjoying "spicy dip"

All four having fun

Zebras at the zoo

Operating the bulldozer at the public works fair

Cece after her piano recital

With Father Joe