We are thrilled to be walking in this year's Heart Walk to benefit the American Heart Association. The walk takes place on May 14th at Busch Stadium. You can go here to register if you would like to walk with us. We would love you to join us! If you can not walk, but would like to donate to the AHA in hopes that their research and education would continue to improve the lives of those with heart disease (like Connie) or stroke survivors (like my dad), I want to let you know about a neat opportunity we have this year. Conway's Uncle Geoff works for RGA, a company that regularly contributes a large donation to the AHA. One of his co-workers, David Atkinson, also raises $ for AHA and also 50% MATCHES each donation from his own pocket! He asked permission to use Conway as his "poster child" this year and shared his story with family, friends and coworkers. By contributing via David's page, you are turning your contribution into an even larger one! That means $10 becomes $15!! You can click HERE to make a donation.
Thank you! Hope to see you on May 14th.
Thursday, March 24, 2011
Monday, March 21, 2011
Update
Thank you to everyone who has been praying for my mother and grandmother. Mom is home and recovering and still has both feet! My grandma is still rehabbing her shoulder, but should come home in a couple of weeks.
Conway spent almost all of his spring break with a fever caused by a mystery "virus." He was swabbed for everything under the sun and all results were negative. Today he had his follow-up on the lazy eye screening and he was negative for that too, thankfully! No lazy eye and no change in eyesight. Still farsighted, but not enough for glasses so we don't go back until December, 2011.
Now just cross your fingers that he doesn't pick up strep from Celeste! Poor girl is on antiobiotics now and hopefully will feel better soon.
Conway spent almost all of his spring break with a fever caused by a mystery "virus." He was swabbed for everything under the sun and all results were negative. Today he had his follow-up on the lazy eye screening and he was negative for that too, thankfully! No lazy eye and no change in eyesight. Still farsighted, but not enough for glasses so we don't go back until December, 2011.
Now just cross your fingers that he doesn't pick up strep from Celeste! Poor girl is on antiobiotics now and hopefully will feel better soon.
Saturday, March 12, 2011
Come on Spring!
Connie's sick. It's one thing after another lately with him. He started with an eye infection two weeks ago, then we had the whole asthma scare last weekend. We're still treating that as his cough persists. Yesterday he took a 4 hour MORNING nap and has been increasingly whiny. Today I was just about to pull my hair out with him only to find him with a temp of 102 after his nap. It did go down some with ibuprofen so cross your fingers and pray that this is quick moving and he gets back to himself soon. Also, my mom is having surgery on Monday and my 96 year old grandma is recovering in a rehab center following a fall that fractured her shoulder. She's in quite a bit of pain too. We're asking for an abundance of God's blessings over these next few days and weeks and have faith that He can deliver!
Saturday, March 5, 2011
Celebrating Life and Tolerating Life
The first part of that title stands for honoring Conway's birthday this past week. On March 3 he turned four years old! Can you believe it? He wore his new bowling shirt to preschool and took bowling ball cupcakes to share with his class. Grandma and Grandpa George took us to Red Robin for dinner and we came back to the house for cake again! I think his favorite part of the day was wearing his shirt and getting a balloon from the restaurant. He just doesn't like for Karsten to play with his balloon!
The latter part of this post title is in reference to the fact that we often are forced so quickly out of the celebration mode and thrown into the reality of everyday life with Connie. On his birthday, he was sent home from school with a report from a vision screening that was performed there saying he needed to be seen by an opthamologist due to having a suspected lazy eye, or amblyopia. This was a shock to us as he has been followed by a phenomenal eye doctor since he was 7 months old, having check ups every six months. We were surprised at this development. We called his eye doctor's office and have a follow-up scheduled for March 21st. They did say that sometimes the screening tool can have a false positive, but that it is usually fairly accurate. Then Thursday night Connie spent most of the night coughing a barky cough. We thought for sure it was croup, as it sounded just like it. He visited Dr. Davis Friday and instead of coming home with a diagnosis of croup, we've now added Asthma to the list, along with three more daily drugs; nebulizer treatments of an inhaled steroid every four hours until he's able to go 48 hours without coughing, an oral steriod twice daily and an allergy tablet! He spent both Thursday and Friday nights awake, scared and struggling to breathe. The only relief we found was a steamy bathroom. Prayers that tonight is peaceful and restful are much appreciated. It's already 9:45 and he's still wide awake (of course that's thanks, in part, to the albuterol he's on) and coughing constantly the second his head hits the pillow. Right now his pediatrician thinks that his asthma is the type that is triggered by a virus and while most kids can shake it after a few days, it seems to linger and linger in asthmatics and they need breathing treatments in order to get over the hump and get better. We've even seen that be the case with Mary Kathleen, but we've never seen any of our children struggle so much for a breath. It was truly scary to witness.
Sometimes around here it kind of seems like the terror alert system that went into place in the US after 9/11. For today we're still doing what we do, just with a heightened sense of angst, alertness and worry. Our family's "threat level" is elevated for the moment. As always, we welcome your prayers and thank God that we're not in the same boat as many of our heart friends and families tonight. This has been a rough winter for many and so many are struggling with illnesses right now. If you have a moment, ask for healing and health for those kiddos too.
The latter part of this post title is in reference to the fact that we often are forced so quickly out of the celebration mode and thrown into the reality of everyday life with Connie. On his birthday, he was sent home from school with a report from a vision screening that was performed there saying he needed to be seen by an opthamologist due to having a suspected lazy eye, or amblyopia. This was a shock to us as he has been followed by a phenomenal eye doctor since he was 7 months old, having check ups every six months. We were surprised at this development. We called his eye doctor's office and have a follow-up scheduled for March 21st. They did say that sometimes the screening tool can have a false positive, but that it is usually fairly accurate. Then Thursday night Connie spent most of the night coughing a barky cough. We thought for sure it was croup, as it sounded just like it. He visited Dr. Davis Friday and instead of coming home with a diagnosis of croup, we've now added Asthma to the list, along with three more daily drugs; nebulizer treatments of an inhaled steroid every four hours until he's able to go 48 hours without coughing, an oral steriod twice daily and an allergy tablet! He spent both Thursday and Friday nights awake, scared and struggling to breathe. The only relief we found was a steamy bathroom. Prayers that tonight is peaceful and restful are much appreciated. It's already 9:45 and he's still wide awake (of course that's thanks, in part, to the albuterol he's on) and coughing constantly the second his head hits the pillow. Right now his pediatrician thinks that his asthma is the type that is triggered by a virus and while most kids can shake it after a few days, it seems to linger and linger in asthmatics and they need breathing treatments in order to get over the hump and get better. We've even seen that be the case with Mary Kathleen, but we've never seen any of our children struggle so much for a breath. It was truly scary to witness.
Sometimes around here it kind of seems like the terror alert system that went into place in the US after 9/11. For today we're still doing what we do, just with a heightened sense of angst, alertness and worry. Our family's "threat level" is elevated for the moment. As always, we welcome your prayers and thank God that we're not in the same boat as many of our heart friends and families tonight. This has been a rough winter for many and so many are struggling with illnesses right now. If you have a moment, ask for healing and health for those kiddos too.
Wednesday, February 16, 2011
Happy Heart Day
We just finished out Congenital Heart Defect Awareness Week, Feb. 7-14. We celebrated by making cookie/treat platters with the other Heart 2 Heart parents and kids for the pediatric cardiology offices at Mercy Children's, Cardinal Glennon and St. Louis Children's Hospitals. I was also able to deliver the donations from the very generous moms in my Assumption MOPS group for families at SLCH in the Cardiac Intensive Care Unit.
Since Connie's about as bowling-obsessed as they come, Greg made him some bowling valentine cards to give to his classmates at his party yesterday. Here's a pic of it.
Connie's still doing very well at school. He rides the bus one day a week now and loves it. We had his IEP meeting about a week ago and he has done great with his goals. He will still receive a little PT to work mainly on core strength and speech/language will see him a little more to add some receptive language goals too.
He'll be four years old in just a couple of weeks. It's so hard to believe! I know everyone says that, but there have been times that we weren't certain we'd ever see this day. What a blessing he has been to our lives!
Since Connie's about as bowling-obsessed as they come, Greg made him some bowling valentine cards to give to his classmates at his party yesterday. Here's a pic of it.
Connie's still doing very well at school. He rides the bus one day a week now and loves it. We had his IEP meeting about a week ago and he has done great with his goals. He will still receive a little PT to work mainly on core strength and speech/language will see him a little more to add some receptive language goals too.
He'll be four years old in just a couple of weeks. It's so hard to believe! I know everyone says that, but there have been times that we weren't certain we'd ever see this day. What a blessing he has been to our lives!
Thursday, January 27, 2011
Miracle Workers
A friend sent me this article about the heart surgeon who pioneered the procedure used during Connie's first surgery, the Double Switch. His Double Switch was not a straight forward one due to his sub pulmonary stenosis (obstruction) so he had to have a Rastelli-Senning. Here's a little glimpse into Dr. Rastelli's life. It would be pretty neat if he were, indeed, cannonized by the catholic church someday.
Have a great day and remember to be grateful!
Have a great day and remember to be grateful!
Wednesday, January 5, 2011
We're home... ALL of us!
Napping right before discharge
Cheesy smile... how we knew he was feeling himself again
Just a bit before the procedure got underway
Weird... I wrote this post yesterday evening but I guess I didn't "publish" it! Here it is:
We were expecting Connie and Greg to be spending the night in the five star resort known as StL Children's, but instead we are all home as Conway was discharged just before 5pm. We are so thankful that everything went off without a hitch. Dr. Balzer explained that he feared that stenting open his conduit would have led to additional pulmonary valve leakage. Basically, we would have been trading one problem for another. In a normal person, the pressures in the right side of the heart are about 1/5 of the left. In Conway, the RV pressure is more like 2/3 of the LV. He feels that surgery is the next step, but there is some room for flexibility on the timing. We certainly don't have to rush into anything, as he "looks pretty good" considering the complexity of his heart. He guesses that it will likely be scheduled for summer 2011 (to avoid the cold and flu season), but that will be up to Drs. Bove and Bromberg. We knew this day would come eventually, we just had hoped that it would be more like when he was 8-10 years old.
Cheesy smile... how we knew he was feeling himself again
Just a bit before the procedure got underway
Weird... I wrote this post yesterday evening but I guess I didn't "publish" it! Here it is:
We were expecting Connie and Greg to be spending the night in the five star resort known as StL Children's, but instead we are all home as Conway was discharged just before 5pm. We are so thankful that everything went off without a hitch. Dr. Balzer explained that he feared that stenting open his conduit would have led to additional pulmonary valve leakage. Basically, we would have been trading one problem for another. In a normal person, the pressures in the right side of the heart are about 1/5 of the left. In Conway, the RV pressure is more like 2/3 of the LV. He feels that surgery is the next step, but there is some room for flexibility on the timing. We certainly don't have to rush into anything, as he "looks pretty good" considering the complexity of his heart. He guesses that it will likely be scheduled for summer 2011 (to avoid the cold and flu season), but that will be up to Drs. Bove and Bromberg. We knew this day would come eventually, we just had hoped that it would be more like when he was 8-10 years old.
Results
I figured when they came for his bed after only 1.5 hours that no stenting was done. That wAs right. Dr. Balzer said Connie is right on the borderline for surgical recommendation. Timing will be up to Drs. Bove and Bromberg but the likelihood is that it will be done this summer. Right now Conway is resting with the help of Precedex but he's woken up twice and been upset. The nurse will turn up his sedation if necessary but she really doesn't want to since he's going home today. He has to lay flat until 4:15 and hopefully get discharge papers soon after that.
Cath Lab
Connie was taken in at 8:30. He was very good. They've already gotten access and things are going smoothly. They expect 2-3 hours. Dr. Balzer said if it doesn't look like stenting will buy us a significant amount of time (2+ years) or that he needs multiple stents then he will just leave him be and refer him for open heart surgery. For now we wait I can't speak for Greg but I have an overwhelming sense of peace about today and am so thankful for that.
Tuesday, January 4, 2011
Pre-Cath Work Up
Connie went to Children's today for his pre cath testing. He will have a cath tomorrow with Dr. Balzer. He was very brave-not the least bit nervous actually. He handles these things like a pro. He requested a lemon-smelling face mask tomorrow for when they "gas" him to sleep and wants to watch Bolt on his iPod while he lays flat for 6 hours after he's done with his "nap!" He amazed everyone there today. The last time any of them saw him he was in heart failure and some there felt that a transplant was his only option. Most of the people we saw today hadn't seen him since April 2008. He still had the NG feeding tube back then! I better get to bed soon since he's first case tomorrow. We will be leaving the house around 6am. Please pray that Connie has no fears before the procedure, that his pain is controlled afterward and that things go smoothly, both heart-wise and emotionally. Pray for the doctor's wisdom and that God will guide his hands. Lord, please bless Conway and let him know you are with him through this procedure. Shine on him and let all those we will meet tomorrow see you in us. In Jesus' name, Amen. If you are on Facebook we will be posting updates throughout the day there.
Wednesday, December 22, 2010
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.
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.
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.
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)
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.
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
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!
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
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!
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!
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!
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