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.

Anniversary

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!

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).

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

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.

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.

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!

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!

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!

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

Cardiolgy Visit

Connie saw Dr. Bromberg yesterday morning. He didn't have an echo or pacer check as he just had one in mid April after his little fainting spell/ER visit. He did get a chest x-ray as it's been awhile since we've done one of those. Connie was great. Dr. Bromberg feels that it was a good decision to go back on the diuretic, Aldactizide last week. We're trying to keep the big picture in mind and not over-scrutinize everything with him. However, even with his 2 lb cast on he now weighs a pound less than he did at the end of April without his cast. That, coupled with his puffier appearance prior to restarting the med tells us that he was carrying around a little extra fluid. We tried the little experiment and it didn't seem to work so this probably means that he'll be on some sort of diuretic therapeutically (long term). We brought up a concern that he was often clammy, even when sitting still. Since he isn't short of breath or huffing and puffing after playing or sweating profusely when playing, Dr. Bromberg feels like Connie may just be one of those kids that gets sweaty. He doesn't feel it's a sign of heart failure for Connie as he has no other symptoms! His exam is normal, his last echo was normal, his function is fine. Yes, his heart is enlarged and has been since his first surgery, but that's pretty much it. The doctor reassured us by saying that if we took him to 20 centers around the country and asked if they thought he was a transplant candidate they'd laugh us out of the building. By this he meant that we need to get that out of our heads. He can't guarantee us we'll never have to talk about it, but we need to get last summer's suggestion by SLCH out of our minds. He's not starting him on Carvedilol like we had considered so that's great news too. We will do a pacer check via the Carelink monitor in a month and then go back in September for the next appointment that will include the full work-up with echo, etc. Then he can compare that echo with the one from March and they will be a full six months apart. He also mentioned that at some point, he would like him to have biventricular pacing. In order to get that, he'd have to be opened up and another lead placed on his heart. He's not in any hurry, but thinks that this could be a big deal and a huge help and possibly the answer to all of Connie's problems so for now we're kind of thinking that whenever his conduit needs replacing we'll do it at that time.

We also brought up two other concerns. One was his head size. Greg felt like his head has grown recently. Dr. Bromberg measured it and according to the pediatrician, it is normal for a three year old. Our fear was that the headaches he's been complaining about meant he had too much bloodflow to his head or too high of pressures in the RV or something. Dr. Bromberg also reviewed the CT scan that was done when he fainted/fell in mid April and noted that the radiologist that read the scan remarked about the size of the front of his head but basically said it could be physiologic (normal). The other concern was a new fun oddity for Connie. He's losing hair. Not in clumps or anything, but he's shedding way more than I've ever seen anyone shed. When you run your fingers through his hair you get several strands each time. Dr. Bromberg urged us to discuss it with the pediatrician and Dr. Davis referred us to a dermatologist. We have an appointment for July 1st.

Home

Versed makes me so giddy!

Monkers got an ID bracelet too!

"I so tired."

"All done Dr. Bromberg's Hospital."

It was a long day but went well, I'd say. Arrived at 9:45 am and got discharged around 6:30 or so. They weren't in any hurry to get rid of him b/c of his cardiac history. The anesthesiologist was even going to admit him if it made us more comfortable. We all felt better giving him as much time as he needed and given how much morphine and benadryl that he received, he needed a lot of time just to be able to hold his head up and keep his eyes open longer than a few seconds! He woke up pretty discombobulated in the recovery room but settled down pretty well once they got me back there to see him. I got to hold him and rock him the rest of the hour and then back to the pre-op holding area. He drank a total of 2.5 small cans of sprite and ate doritos and teddy grahams. All was fine until we got on the highway heading home in a torrential downpour when he vomited all over. And I mean ALL OVER! So far he's not been sick again and we're crossing our fingers it's out of his system. The big problem now is going to be keeping him safe. We absolutely must to keep him from reinjuring that arm. Today Dr. Stazzone was able to do a closed reduction, but if this happens again he'll have to make an incision and put rods or pins in the bone. Today he might have even done that but he weighed the risks of potential cardiac complications with extended surgery time and decided that the alignment he was getting was good enough. He referred to the way the bones are placed now as "bayonetting"; meaning that they are not perfectly straight, but one is a little elevated and parallel. He says if it stays this way he'll heal just fine and have no long term problems. We go back in another week to make sure the bone is still in the right place. He says he'll have the cast at least another month and then he's putting him in a brace for a month. We're praying that we can keep him from acting like a boy for at least the next two weeks so that this bone can calcify some and harden.

He got tons of compliments on how well he handled the day. They say most three year olds don't do nearly that well. God sure blessed us, didn't he?

Surgery tomorrow

Just got back from the orthopaedic doctor's office. Should have known by how the morning started out what he'd say. First off, on my way there something hit the windshield and it's got a nice crack now. Then, I mistakenly went all the way in to the Ballas office when his appt. was at the O'Fallon-Progress West office. Then we get into the office and Karsten woke up starving. I guess I should have assumed we'd get bad news after the x-ray. Dr. Stazzone came in and laughing, asked if he'd fallen or hurt it again somehow. Yesterday he was ramming himself into the couch and did jam his fingers and at that time he complained about his arm hurting again. I'm assuming that's what knocked it out of alignment because it wasn't that crooked when he first broke it. The doctor said he has to get this done soon so that it doesn't permanently heal in a v-shape like the x-ray shows now. They split his cast and taped the outside to stabilize it somewhat until his surgery tomorrow. He has to be there at 10am for a 12pm surgery time. He will get anesthesia and then they will yank on it until they get it back into alignment. They said he'll be given a prescription for some pain meds as he will be hurting afterward.

Please keep him in mind tomorrow and pray that he won't be scared and that he won't start hating "Dr. Bromberg's hospital". Perhaps they should change the name of St. John's to Dr. Bromberg's Hospital because that's what he says every time we pull into the parking lot. He's agreed to get a soccer ball cast so hopefully he won't glow in the dark anymore (haha). We'll let you know how it goes when time allows.

Back on Diuretic

For a couple weeks Greg has been concerned about Connie getting clammy. We tried to convince ourselves he was just hot from playing too hard but he was getting like that even when he was sitting still-just playing on the computer, etc. Right after he stopped the diuretic I thought he got a bit puffy and gained some weight (2 lbs.) right away but told myself he'd had a growth spurt and it was just my perception that he was so big b/c I was used to holding the baby all day so of course he would seem bigger to me. He's also been sleeping better than usual; taking longer naps, sleeping in in the mornings and not waking so much at night. It was a welcome change, but unlike him for sure. He's due to go back for a check-up next Monday, but Greg was uncomfortable waiting that long to let the doctor know about these changes. We called the office and after talking with Dr. Bromberg, Nurse Kelly told us to restart his diuretic, Aldactazide. We're bummed a little, but hoping it does the trick to get him back to being his usual self.

He's still got the cast on and goes back for a repeat x-ray on Wednesday. If the bone is not aligned, they are talking about having to surgically correct it. Please pray that it is healing fine and that he might be able to get a waterproof cast on at the next visit. Two days after it was put on he got it wet at school and it had to be cut off and replaced!

We went to Mother's Day Brunch with Greg's side of the family. Here's a pic where you can see his cast. It's hard to miss as it's as bright yellow as they come! He picked it out himself.