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.

Back to the ER

Connie went back to St. John's last night. This time for a broken arm. He was chasing Mookie and she ran down the steps. He tried to push her and missed and his momentum carried him forward down 12 of the 14 stairs. Thankfully his head wasn't injured! And sadly I have a feeling this still won't teach him any lessons about leaving her alone and refraining from constantly aggravating her. If he's anything like me, he'll just use his new cast as a weapon to hit his siblings with (I'm told I was pretty rough on my brother Terry when I had a cast at the age of two). His radius is broken clean through and his ulna has a buckle fracture. The orthopedic doctor thinks that because of his young age it should heal up nicely. He's got a splint cast on now to allow for the swelling and in a few days should get a real cast that goes above his elbow. ER doctor told us that he'll probably be in that one for three weeks and then if all is healing nicely he'll get a cast that goes just below the elbow for another three weeks. For now he can't get it wet at all. It's on his left arm and he's left handed by all accounts so we're not sure how that's going to play out with eating and playing, etc. The cast covers most of his fingers so he really can't use that arm/hand at all. I'm not sure how holding a cup to drink is even going to work. This could be very interesting! He was so brave in the ER and told all of the nurses and doctors all about how he did it all by himself, without me having to explain it for them. His speech sure is taking off. One of them mentioned what a big job he has now that he's a big brother and he associated that with his jobs at school so he told them how he gets turns to be line leader and clip board holder, etc.

Big Brother

Connie is such a doting big brother. Here are a few shots from Baby Karsten's 1st two weeks...

Connie's morning adventure

Around 7:15 this morning I was rocking and feeding the baby and Connie tripped and fell and said he hurt his head. He asked me to kiss it and seemed okay. A few minutes later he started crying uncontrollably about his head and gagging. After about a half hour he vomited. Greg was going to take him to the ER but then his eyes started rolling back in his head and we were afraid of being caught in rush hour traffic. Called 911 and they took him to St. John's. On the ride, he vomited again. While there, they did a CT, echo and pacer check and all look fine. He has no visible sign of injury on his head and is acting normal now. The explanation we've been given is that he had a fainting or near-fainting spell, which can account for the vomiting and severe headache. He's on a holter monitor for 24 hours to record all heart activity and he'll follow up with the pediatrician in the morning. Connie was so brave in the ambulance and at the hospital. He had the iPod to occupy him and the CT scan techs were so impressed with his behavior they told Greg they need to purchase one to keep there for their pediatric patients when they are undergoing testing.

We'll update again if there's any news after the holter monitor is read. On a good note, Dr. Bromberg did a thorough check of him and decided his heart is looking so good he doesn't need the Aldactizide anymore. Looks like there may be hope for potty training yet!

Karsten's Hospital Photos

Karsten Michael Beckemeier is here!

Last night I was sent to Labor and Delivery by the oncall OB because the baby got overly active for a long period of time. By overly active, I mean frantic, struggling type movements--the likes of which I've never experienced in any of the three pregnancies. They put me on the monitor and it was reassuring to hear his little heart beating away. They noticed that I was contracting some, albeit very irregularly. During these contractions, his heart rate kept decelerating so they decided to keep me overnight. If it was better the rest of the night the plan was to send me home. If not, I'd be induced today. By 5:45 am the contractions had gotten regular to every 6 minutes or so. Then they stalled. My OB came in around 9am and said that his HR was continuing to decelerate so he didn't feel comfortable sending me home. I was only six days away from my due date anyway so he wanted to go ahead and get things going. Pitocin was started at 10am and I was dilated to 2cm and 70% effaced. At 1pm they broke the bag of waters and at 2pm I got an epidural. By this time I was at 4cm, contracting every 2 minutes and in active labor. The epidural took quite a while to help, at least 10 contractions. I rested for a bit and then a little after 5pm I was complete and ready to start pushing. They had me try a test push and quickly made me stop because it was apparent that I wouldn't need to push for long. They paged the doctor and he got there and they got the room set up. I took one push on the next contraction and out came our little 10 lb. 12 oz. bundle of joy. He looks more like a toddler, really! Since he came so quickly, they had to suction out his nose and mouth to help him get all the fluid out. The doctor commented on how his arm was tired from holding him for so long and guessed he be closer to 10 lbs than 9 like the other two were. They put him on my chest and he was soooooo purple. I immediately thought it was heart related but they explained that the cord was indeed wrapped around his neck so it would take a little while for his color to return. Plus, being so big, he's a bit bruised as well. He's the perfect baby so far and seems to be nursing like a pro already. I guess so, he's so big he's probably going to be starving all the time! His APGAR scores were 8 and 9.

Karsten's on his way!

We're at the hospital and contractions are about 2.5-3 minutes apart. Will update again with pics after he finally arrives!

Easter Preparations and More!

This weekend we kicked off the countdown to Easter with "Breakfast with the Bunny" on Saturday and dyeing eggs on Sunday. For the first time EVER, Connie climbed up onto a costumed character's lap with NO FEAR! He was excited to do it and even had a hard time patiently waiting his turn. Such a change in our boy, for sure.









He's also ridden the school bus to school twice. We started him on Tuesday of last week, thinking he'd start riding it all three days of the week that he attends. However, the bus company called and said they'd added students to his route making his bus ride each way over 51 minutes long! On Fridays it's less than 25 minutes, which is a lot more appropriate for a three year old. We just are taking him and picking him up on T/TH but since he likes it and it's a good experience for him we are keeping him on the bus on Fridays.



Connie has a dentist appointment in the morning. It will be his first appointment where they will actually do a cleaning and full check-up. Because of his heart and the fact that he has artificial material in there, he will be pre- and post-medicated with antibiotics. This is to prevent an infection getting into the heart known as bacterial endocarditis. Please keep him in your prayers so that he will not be scared of the dentist and that the antibiotics will do their job in preventing this possible complication.

Greg hooked up a little computer at the student desk we have and after only one lesson on working the touchpad mouse, Connie mastered it! He's been spending some of these past couple of rainy days perfecting his skills on Curious George and Super Why games. He's such a techno kid!

Better than Expected

was the title of the email I just got from the cardiologist. If you weren't confused enough after reading the previous post with the appt. update, this will for sure confuse you! Basically, the doctor looked again at all of Connie's echo angles from the last two echos side by side and does note an incredible improvement in the last two months. He is attributing this to the adjustment made to the pacemaker and said that in 2-3 years Connie's heart rate will naturally decrease as a function of age and at that time we can resume dual chambered pacing. For now, the benefits that one reaps from dual chambered pacing do not outweigh the improved LV function we are seeing by pacing him disconcordantly.
Here are the specifics:
Biplane ejection fraction* (January 44% vs. March 60%)
A4C single plane ejection fraction (January 55% vs. March 70%)
A2C single plane ejection fraction (January 34% vs. March 47%)

*composite of A4C and A2C, and considered best measure of overall function.

All we have to say is WOO HOO! We are so blessed to have such a diligent, thorough doctor. We are still proceeding with the new drug-Aldactazide-rather than stopping a diuretic completely, but we'll reassess this in two more months. Praise God!

Big Appointment Update

Today was Conway's 2 month follow up at the cardiologist's office. At the last appointment, we changed the pacemaker settings so that he wasn't beating so fast and this was the appointment where we would see if that improved his ventricular function or not. He remains asymptomatic and seems to keep up just fine with the other kids in his preschool class according to his teachers. His appetite is good and now that he's not sick anymore he's put on a couple of pounds in just two weeks! We've even been given the okay to switch him to 2% milk from Vit. D. His echo is pretty much unchanged and his squeeze actually looks pretty good in all but one plane or view. Upon exam he actually sounds the same and his liver is a tad smaller (a good thing, enlarged liver is a sign of heart failure). He definitely doesn't present as patient with a poor squeeze or cardiomyopathy. What is still concerning is that his ProBNP, a blood test that measures heart failure, is still very elevated. His levels that were drawn last Wednesday were close to 3000 and normal is considered 150. Again, this test has not been studied much in the pediatric population and we don't know if the higher the number means a more severe level of failure. All we do know is that when he was very heart sick he was 7000, when he was "all better" eight weeks after mitral valve repair he was 1900 and now he's 3000. That says he's worse than the fall, but not as bad as last spring. Given that information, Dr. Bromberg wants to proceed cautiously and treat him as if he were a patient with dilated cardiomyopathy. I thought we'd be devastated hearing that news today and even asked Greg to come to the appointment with me thinking that my pregnant, hormonal self might lose it. However, we left feeling somewhat relieved. He's NOT getting worse, he acts fine, we're just taking precautions. Dr. Bromberg says he wants this heart to last Conway another 80 years and he's unsure what exactly could be making that one view look off. It could be an injury from his first surgery and it's just going to stay at that level of decreased function forever, it could be that the aortic valve is a bit leakier or it could be this degenerative dilated cardiomyopathy business. Our biggest concern is with preserving the function he has now and not letting this get worse. It may not ever get worse on it's own, but we don't want to find out. For now we are starting him on Aldactazide and we go back in two months for another follow-up. At that time he will likely start Carvedilol (Coreg). We are coming off of the thyroid drug since his TSH was normal. At one time it looked as though he may be free of any heart drugs and that's not looking so likely now. The important thing is that the word transplant "isn't even in the discussion" according to Dr. Bromberg. Acting on this now is hopefully what will prevent that becoming necessary in the next 20-30 years.

Quick Update

Connie has had a lot of changes to deal with the past week or so and has been handling them like a champ! Not only did he start preschool three mornings a week, but he has started Sunday School and today will go to his first unaccompanied story time at the library. His teacher reported yesterday that he did not need his Monkers (monkey lovey) at all the whole morning at school. He's been blowing them away with his mad skills on the playground and causing all their hearts to leap everytime he tries anything remotely "dangerous". He did pay an early visit to Dr. Bromberg on Monday because he had a tiny spot on his sternum where one of the wires poked through a bit. We had it checked out and all seems fine for now. The spot isn't infected and we'll just try to get him to take it easy and not lean on his chest for a few days. Of course we were worried because he had been crying and saying his "tummy hurt" whenever anything touched his chest like when we wash hands at the sink or when the chest clip of his car seat would touch. Then when we got to the office he let Dr. Bromberg touch all over it and press down on it without even flinching! Silly boy.

Gus

2000-2010.

Jesus,
Please welcome this brave heart warrior home with open arms. We trust you've restored him to perfection and hope to someday see his gigantic smile greet us when we, too, will enter your kingdom. In your name we pray, Amen.

Eligibility Meeting/IEP/Preschool Update

Well, turning three years old is a big deal in many respects. For kids who get special services (early intervention) it means that the birth-three services end and the school district takes over continuing services if a child is "eligible" to receive services. A couple months ago we started the process of determining eligibility (testing) and today we had the meeting to go over the results. Drum roll please...

... CONNIE IS INELIGIBLE!!!!

That's right, our boy has made so much progress thanks to Ms. Chris, Ms. Deb, Ms. Carla, Ms. Jen, his doctors and nurses and of course his family that he scored too high on the testing to qualify for speech/language or PT services. HOWEVER, because he has had so many ongoing health issues, hospitalizations, etc. he is still slightly below his peers in the area of communication and gross motor development so the district's philosophy is that it's better to give him services now rather than waiting until he's five or six and then saying, "Oh, he's fallen behind and now it will impact his education." They will use his cardiac issues to give him a diagnosis of "Other Health Impaired" which will give him to opportunity to receive speech and PT services in a preschool setting. Some kids just go to therapy a couple times a week and meet one on one or in a small group with a therapist, but the team felt strongly that he would get the most benefit from being around typically developing peers as models for speech and motor development. Therefore, he will go to preschool two mornings a week in a class of 14 students, most of which are typically developing children. He will have two teachers and an aide and throughout the day, PT and Speech therapists will push in to his class and work with him or any other kids who need those services as well. Then one morning a week he will be in a small class of five students who are all working on speech issues. The best part for him is that he will get to ride a school bus! We are going to start by taking him and picking him up for a while, but they said that once the kids see their friends riding the bus they start asking for it too. I'm sure once the new baby is here and we're juggling nursing with MK's preschool schedule, etc. it will be nice to have that convenience available!

Tomorrow we'll take him to see his classroom and meet his teachers and classmates and then he will have his first official day on Thursday. Please pray for him and us as we make this transition. Being a teacher, I want him to love school and it seems that he does love his little class he's been going to once a week, but this is a big step for him and in a new building with new faces and a lot more kids! Pray that God helps him be open to all the joy and fun and exciting times that await him.

More on Gus and Connie's 3rd Birthday Party

Gus has taken a turn for the worse. He's been losing a lot of blood. Losing it faster than they can replace it. He has to be on blood thinners so that his LVAD (pump) doesn't get clots, but that therapy is causing him to not be able to clot. Additionally, he suffered a stroke this morning and has blood on the brain, causing continual seizures throughout the day. This has affected his status on the transplant list, causing him to be removed for now. Please pray for this family and this child-that God will comfort them all. Greg and I have been pretty shaken by his story.

We invited grandparents, aunts and uncles and cousins over today to celebrate Connie's third birthday (coming up on Wednesday). He had a great time and even sang the "Happy Birthday" song to himself! It was so cute and so fun to think how far he's come. Speaking of how far he has come, we had to say goodbye last week to Connie's wonderful First Steps therapists who have been coming to the house weekly for the last 28 months. There were times that he would have 4 visits a week from the various therapists. He was down to just speech therapy weekly and physical therapy once every other month. He was recently evaluated by our local school district to determine eligibility and whether or not he will continue receiving services. We have our meeting with them tomorrow to go over the results and I'll let you know how it goes. We are so proud of how far he's come!

Gus Update

Thank you all for your prayers for Gus. Unfortunately, the staff has been unable to successfully wean him off the LVAD machine and as of last night, the plan was to complete all the data gathering today via a cath and then list him tonight for a heart transplant. Please continue to pray for him, for God to give him the strength to endure until a match can be made for him. This position is such a difficult one for families to be in because they feel guilty praying for their child to get a healthy heart knowing full well what it means for the donor's family.

Coming up on Saturday we will mark 6 months since Connie's mitral valve repair and ablation. The significance of this is that we were told at that time that if he made it six months with no arrhythmias (atrial flutter episodes) that it was a good sign that he would remain free of arrhythmias! Go Connie!

Prayer Request

Gus, an eight year old local heart friend underwent an attempt to repair his mitral valve today (like what Connie had this past August) and is having serious complications. Here is what his dad posted on his carepage a little bit ago. "Shortly after his surgery his heart rate became unstable and could not be stabilized on its own. The surgery team had to install a left ventricle assist (pump) which is outside of his body to support the blood flow thru the aorta. He will remain sedated for an undetermined amount of time, guesstimates rage 3-5 days, while his heart and body can heal from surgery. The hope and expectation is that the left ventricle function will improve. Many issues are on the table for Gus and we all know he is a fighter. With the grace of God and the support of the medical staff we will have to wait out the immediate future and pray for his recovery." Please storm heaven on this boy's behalf. We have all witnessed the power of prayer!

Eye Doctor Appointment

We got good news today! Conway had a six month follow up appointment with the eye doctor. At his last appointment they said that his far sightedness had worsened and if it continued to do so that he would either need to wear the glasses full time (which we didn't have much luck with before) or have eye surgery. We were pleasantly surprised today to find out that they are very impressed with his eyes. He's showing no signs of lazy eye or crossed eyes, which is common with extreme far sightedness. After a few tests they sent us on our way and said to come back for another check in September! He didn't even have to have his eyes dilated! They just kept saying how good things looked and at this time we can possibly even expect that his far sightedness could improve on it's own over time! Woohoo!

Snow Day

For those without a facebook account...

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Crossing Fingers

Just when we thought we had turned a corner with Connie and his lingering cough (started Zyrtec and Singulair 6 days ago) he woke up last night around 3:30. Not for a wet diaper but to cry out that his "head hurt". He's complained every single day since his pacemaker was changed that his head hurts but usually only says it once and then goes about his business. We were hoping it might be a side effect of the mono hanging on and planned to wait it out a couple more weeks to give the new pacer settings a chance to improve his LV function. Most often, the complaint about the headache comes right after rising-in the morning and after nap. Last night it was literally preventing him from going back to sleep so we brought him to our bed around 3:30. He continued to complain and moan about it even after a dose of ibuprofen and around 5am he vomited up the med. We'd like this to just be nothing, but know in the back of our minds that this could be heart related. Right now he's still sleeping, presumably because he was up so much last night. We'll see how the day goes and keep everyone posted. Please say some prayers today that we can all get over these winter bugs, stay healthy and for his heart to be okay.

Happy 5th Birthday Big Sister Mary Kathleen!

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Bloodwork Update

The nurse from Dr. Davis' office called this morning to say that the lab results from Saturday are in and it's official. Connie has mono. Good news is that he's NOT allergic to penicillin/amoxicillin/augmentin!

Maybe a Glimmer?

I gather many of you did not quite know what to think of the last post from Thursday regarding his check up. In a nutshell, here's how we took the news: DEVASTATED!
While nothing is imminent, it sounded to us like our best case scenario was that his function could improve with some simple changes to the pacemaker. Worse case scenario is that this is actually a life threatening disease-one for which there is no cure.

Well, one test we had done yesterday was that notorious BNP to measure heart failure. We were kind of expecting it to be elevated above what it was in October since his echo and physical exam are showing that his heart function is decreased. In October, 8 weeks after his surgery and when he was absolutely doing phenomenally heart-wise, his BNP was 1800 (normal is under 100). Guess what it was yesterday? 439! It has dropped significantly so it's quite puzzling to me that he could actually be getting worse. I haven't heard back from the doctor yet about what this may or may not mean, but for the moment we're taking it as the best news we've had all week! Hope is the new theme around here... for the day, anyway!

Side note: He's developed a nasty rash and it's been narrowed down to one of two possibilities. Either it's an allergy to penicillin or it's Mono. We get the lab results on Monday to determine if it's mono. He's stopped the antibiotics he was on for his ears and whatever bug he had and his ears looked great today.

Cardio Appt. Update

Connie saw Dr. Bromberg this morning. Here are his new numbers... He's grown two inches (now 38 in.) but hasn't gained any weight since late September. His BP, HR and SATs were all pretty much exactly the same as his last visit. He was echoed because there were concerns about a decrease in his left ventricular function and the aortic valve leakage worsening as well. We were hoping that things just looked different on that December echo because it was not the same tech. Well, today's echo did confirm that things are not as good as they were in the early fall. On numbers alone, Connie's ejection fraction (the measurement of how efficiently the heart is squeezing/pumping) before valve repair (when he was super sick)was 32%. After his August surgery that climbed to somewhere in the mid to upper 50's, around 56%. Today the numbers we got were in the low 40's. The tech kept remeasuring as she would get a 40% but swear it looked like a better squeeze than 40%. No matter how many different times she tried, it never got higher than 44%. Meanwhile, he's not showing any signs of being in heart failure (a good thing) other than those two little episodes in December where he'd have a sustained high resting heart rate and vomit for no reason.

So, after thinking a lot about it, Dr. Bromberg has come up with a plan. He's seen lots of cases where simply changing the way the pacemaker does it's job can make a big difference and improve LV function. That's what we'll try first. Today he reset the pacemaker to no longer force the ventricle to beat in accordance with the atrium. Before the technology got as good as it is now, that's how all young children used to be paced. It is theoretically less efficient, but for someone with high atrial rates, it can prevent the ventricle from overworking along with the atria. We are to go back in 2 months to do another echo and labwork and compare it with today's.

If we do not see improvement, we may be looking at a case of dilated cardiomyopathy. It's highlighted so you can read what exactly that is. Here are possible treatment options for it. The one he mentioned specifically was adding a beta blocker, Carvidilol.

Oh, and his pulmonary valve (we think) appears to be leaking more. The murmur is louder and echo appears to confirm it. This was actually our bit of good news from the appointment because if it has to happen, it's better that it's this valve rather than the aortic or mitral.

This news brought up the conversations/fears about future surgeries or transplant and Dr. Bromberg says we're still a ways off on those discussions. He said he had a patient that he said was probably his sickest ever who had cardiomyopathy and he treated him with drugs and 9yrs later he's still here and still hasn't been transplanted. The good news is that if it is dilated cardiomyopathy, Connie is still symptom free and we might be the lucky ones that are catching it early. There is no cure, but we may be able to reverse or at least stall the damage.

This is why frequent check ups are so important for these kiddos! Connie looks and acts fine. He did have a BNP level drawn in Sept or Oct that in retrospect probably should have been a little bit lower (that's that blood test that detects heart failure). You can't just look at one thing. But with the BNP, the echo, and the exam all pointing to his little heart working harder, it probably would just be a matter of time before it caught up with him and he became symptomatic. Hopefully we'll get some good news in 2 months that shows that he just needed to be paced in a different way. In the meantime, we ask for your prayers. Specifically for his heart function to improve and for him to stay symptom free. It probably wouldn't hurt either to ask God to help him gain a pound or two.

We are puzzled by this development, but keep repeating to ourselves the words that God spoke to my mom when he was so sick after his first surgery-that Connie would live a long and happy life. There are times like this when we question how can that be possible? If he ends up needing a transplant it is almost a guarantee that we will outlive him. Thankfully, we are not at that place so we will continue to trust and have faith and pray. Back when we thought he'd be blind and severely cognitively delayed we certainly didn't imagine we'd ever see him as happy and normal and smart as he is today, but look what God did for him then!

Update on being sick and cardio news

First, the update. Connie is still sick. His fever is gone, but his cough is the same and he's been complaining of pain in his left ear as well. His pediatrician changed his antiobiotic from Amoxicillan to Augmentin. We're supposed to check back in three days to let him know if he's improving. The biggest problem is his sleeping is all screwed up. He's waking 4-5 times a night either in pain or just not feeling well and because of this, is napping about three times a day! He's just been miserable and whiny and not himself.

Now for the cardio news. I got a call out of the blue today from his cardiologist. He said that he's been thinking about Connie for weeks now and is wondering if he's feeling better since we took him in right before Christmas. If you remember, he had had two little scares with high heart rates and vomiting and acting like he was in flutter again and both times checked out okay. Well, Dr. Bromberg did look at his late December echo the day after it was done and it did look to him like the LV function might be down a bit. Of course, he wasn't in the office to examine him and his partners read the echo and compared it with Septembers and saw no change, but he said it was different and it may just be that a different tech did the echo than the one that normally does, or it may be that his Left Ventricle is indeed not squeezing as well. Either way, he wants to see him sooner than the Feb. 15th appt. we had set up and make some adjustments to the pacemaker settings. We're going in next Thursday and he wants another echo and to change the pacer. He might try uncoordinating the V pacing from the A pacing. What can sometimes happen in patients who are artificially paced is a weakening of the LV over time. He suspects that what might be happening is that when his atrial rate is increased (illness or whatever) that it is forcing the ventricle to do the same and overworking it causing it to weaken. This is generally not a problem once children get older and have a much lower resting heart rate. For now, we know that Connie's rate does increase on occasion for no good reason (that we can see anyway) and for this reason, we think pacing the ventricle in a different way, one in which does not correspond directly to the atrial rate, might help his function improve. It might not. It might cause other problems. We won't know until we try and for now that is the plan. After it's adjusted, he'll wait for feedback from us on what changes, if any, we notice in his energy level, sleep, etc. Then he'll repeat an echo 4-6 weeks out and see if there is any noticeable difference there.

While I was surprised in a negative way to hear from Dr. Bromberg, I can't explain to you how good it made me feel. I mean, he's been thinking about my boy since before Christmas and trying to figure out exactly what could be triggering this and he thinks he's got a solution now and that's pretty neat. I don't think there are that many doctors that try so hard for one patient.

Sick Again

Hello All! Hoping everyone had a wonderful Christmas. We sure did. Connie's new favorite phrase was "Happy Christmas!" and he would say it frequently. We modified it to add "Happy New Year" but instead it turned out "Happy Christmas Year Year!" It sounds so adorable coming from his little voice. It's been awhile since we've posted anything about him or new pics so I'll just jot down a few things that come to mind. He's still completely obsessed with bowling. He can turn anything into a bowling set. He loves to paint and got an easel from Grandma and Grandpa for Christmas. He names all the colors that he wants to paint with and does a good job asking for more when one is all gone. Other times, he just sets up all the paint bottles and bowls them down. Like I said, he can turn anything into bowling! When he's not bowling, he's playing the Wii. It started with him bowling on the Wii, but now he knows how to play pretty much every game on Wii Sports Resort. He'd spend hours downstairs playing if we let him. At least when he's down there he's not aggravating the daylights out of his sister Mary Kathleen. During breakfast he's become fond of watching Super Why, a PBS cartoon about fairy tales and reading. He requests to watch this show no less than 50 times a day.

Well, the main purpose of this post was to let you know that he's got a fever, cough and drainage (still clear). The cough sounds very much like when he had the croup at Thanksgiving, but that was not accompanied by runny nose or anything else. Last night I took him out in the night air for a few minutes and that seemed to help. Today he was annoyed with the drainage and had no appetite, but overall was pretty pleasant and feeling better. By dinner time tonight the cough was increasing and the fever came back. He had been in bed a little over an hour, and sound asleep, when he woke up coughing and wheezing again. I had given him albuterol and motrin along with his regular heart meds before bed, but the cough continues to prevent him from sleeping and the difficulty breathing is making him scared. I used the nebulizer again with just water and that calmed him down. He's back in bed now but I'm a little leary, if his condition worsens, of taking him for a car ride with the windows open in these extreme temperatures (which is what was recommended by the nurses when he had this cough before). They are saying the wind chill is supposed to be around minus 24F tonight! Please pray that he gets some rest and that the cough improves.