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.

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!