My cute kids - with PICTURES!

 Charlie and Brennan and chalk

 Isn't he just too cute??

Alina and Charlie grew up in the same orphanage, and now they live less than an hour apart! Alina came to visit with her awesome mom. She brought her brothers too, which Brennan thought was way cool!

 They both love sand...

...and water!

My boys are just so stinkin' cute, aren't they! They hear that from me a ridiculous amount of times every day. If they were any cuter, I don't think I'd be able to look at them directly.

Brennan had a mini-word explosion and I love hearing things in his little voice! He's still picking up words pretty quickly. His newest is "boat", which is SUPER cute. He talks and babbles all. the. time. We try to get him talking on video, but as soon as we take out our cameras or phones, he goes silent! He says whatever is on his mind, which is usually "Cracker". Today it was, "Cack-er. Cack-er. Aw, cack-er! Oh, cack-er." He cracks me up! We also hear "Mommy!" and "Daddy!" constantly. If one of us leaves the room, Brennan calls for us at the top of his lungs! I love it. Or he'll just be walking around, see me, and start, "Mommy! Mommy. Mommy!" Brennan also says "fast" and "wait" - can you tell what he hears every day? ;)

Charlie is more or less stable. His last fever was a week and a half ago and lasted five days. The last two mornings he's had fevers in the morning, which usually turns into a full-blown fever. I'm actually hoping he does have a fever on Wednesday, because we'll be doing labs and we need "sick" labs from him. Although, this time he actually has cold symptoms, so if he's just got a cold, it might skew the labs we really need. Poor kid needs labs from a few different specialties, because we can never get enough in one draw. And half the time we DO get enough, the sample itself is worthless because it's clotted or hemolyzed(squished). Charlie has horrible veins - there's only two that have really been successful, and one of those usually disappears when they get the needle in. It's horrible to watch, but the last two times he's been so distracted by toys or bubbles that he didn't even cry! Anyway, after we get the labs done we *may* know more about when he can have heart surgery. I would really like to get it scheduled so it can stop looming over our lives. I did hear from cardiology last week - they didn't have anything new to say, just waiting to consult with other specialties - but the doctor did indicate that it was good I had called, to "keep the ball rolling." So, what, if I hadn't called, would you have DROPPED the ball? That makes me REAL confident in you. Come on. That's a three year old ball named Charlie, and he doesn't like being dropped!

Eating is once again a struggle for Charlie. I think he just doesn't have the energy. I'm pretty sure his pressures got higher after they closed his PDA, because he's seemed to have much less stamina. Charlie used to chug 36 oz a day and was gaining weight like crazy! Now we have to force him just to get 22 oz in. We've learned a few tricks that make it easier to get it in, otherwise he'd be eating closer to 15-18. For an entire day! He is supposed to get a minimum of 28 oz per day. I've almost entirely cut out spoon-feeding, which I think will be bad in the long run, but it doesn't get him the calories he needs, and then he's too full to drink enough milk. Unless anyone has any ideas on how to make a 1/4 cup of mashed potatoes with 120 calories, we've given up on that for now. If he's having a good day and is making his minimum, then I'll feed him as a "treat" - which of course, to him, isn't a treat at all. Lol. I have been feeding him all sorts of tidbits - bread, fruit, crackers - with mixed results. We found out he LOVES the cream part of creamy wild rice soup. Scrambled eggs went over pretty well too! 

Last week we went one an awesome vacation with my family! For the past two summers, my mom has been too sick from chemo/radiation to celebrate her birthday. So this year, we went on a family trip to our special spot, Duluth! Our family loves Duluth. My parents honeymooned there, Ken and I got married there, and my sister and her husband got engaged there. I was so excited to show it to my boys! We brought them to the beach to play in the waves, and they loved it! Brennan played in the waves with his uncle, and Charlie sat further up on shore. Occasionally a wave would come up and knock him over, so we stayed really close! Both the boys love being in the water. I call them my little fish. We finally had to drag them away when Brennan was shivering so badly he could hardly talk. We had a great few days with my family and introducing the boys to a bunch of new things!

Medical update on Charlie

There isn't much of an update - we still don't have a plan of action for Charlie. Everything is hurry up and get this appointment, wait for everyone to consult with each other, then decide we still don't have any definite answers, so maybe he should see this OTHER specialist as well. We've gotten NO where. This past week we saw pulmonology, infectious diseases, had a sleep study, PT/OT, ST/PT, and had an ER visit. All in three days. What we got from that? ...we need more labs done. We do have a lead, of some sort - his fevers *may* be from TB that is in his bladder/kidneys, instead of his lungs. Maybe. The good news is if it IS the TB, he can probably go ahead with heart surgery. So that's the gist of what's going on. I'll go into more detail below, but you can stop reading here if that's all you wanted to know. :)

To make this as simple as possible, I'll go in the order that he had his appointments.

Sleep Study: Charlie does NOT have sleep apnea. He did have about 10 apnea episodes, but does not qualify for a diagnosis. So, yay. But, his other breathing issues at night are still concerning. At night, Charlie's sats stay lower (91-92% - he is "allowed" to go to 88%) and his carbon dioxide is slightly higher. He's working harder to breathe and not doing it as well. In any other kid, the doctor would have started O2 at night. But since Charlie is supposed to have his heart fixed soon, we're holding off to see if that fixes the problem. Once again, Charlie's numbers were in that iffy wiggle room grey area, so it's not urgent that we do anything, but we certainly need to keep an eye on it and follow up.

Pulmonology: Not many answers here. We had a consult because some of the results from Charlie's heart cath could have indicated something more going on with his lungs that was worth checking out before surgery. The doctor thinks it is most likely due to the pulmonary hypertension. He was more pessimistic about Charlie's surgery, but he didn't have the full cath report in front of him. He was going to consult with the cardiologist and tentatively cleared him.

Infectious diseases: I liked this guy. He actually had some ideas about Charlie's fevers and was more in my line of thinking - test the heck out of Charlie and see if anything shows up. If nothing shows up, then there's nothing holding him back from heart surgery. He ran a bunch of labs, which didn't take into account Charlie's poor history of actually giving us all the samples we need. So we still don't have the answers - we need more labs done. And he's also going to consult with the cardiologist (hello, care conference anyone??). But as a result of those labs, we ended up with a ...

ER visit: So, when they drew Charlie's labs, they included a platelet count. This is supposed to be 100-400. Charlie's came back as 6. His pediatrician called and told us to head to the ER for a recheck. She thought he might have leukemia. It didn't really make sense for his platelets to be 6, because he wasn't pale, had zero bruises, and he didn't bleed all over when they drew labs. In fact, there was a large clot in the tube in the original draw! But we went in anyway, and they drew a ton of labs, which all came back...normal. But hey, Charlie got to visit all his ER friends, who he's getting to know so well! When we go to the hospital, staff who've had Charlie before stop by to say hi because he's just that cute!

So that was the beginning of our week. The rest of the week was a little better, although Charlie has had a fever since Thursday. The docs want "sick" labs from Charlie, but I haven't been able to get him in. I'll call again in the AM, but I think his fever will be gone by then. I hope it is anyway, because in two days we are going on vacation! I am really looking forward to leaving all of this behind for a few days and celebrating one of my favorite people - my Mom! 

My Peanut and Punkin

Charlie has been earning more frequent flier miles at the hospital. They should really start a program, and give parents parking discounts after a certain number of hospital visits!

Charlie is home now, and he's fine. This past weekend, he had a fever, and on Monday night it spiked to 103.4. I was hoping to wait til morning to bring him in, but around 10pm I ended up taking him to the ER. With his fever so high, he wasn't going to sleep anyway, so there was no point in waiting. In the ER they gave him some ibuprofen, and then admitted him for fluids (he was dehydrated) and observation. By the time we got up to his room (4am), his temp was 98.4! That little stinker. I got about 30 mins of sleep that night. In the morning he still didn't have a fever, so I thought we'd go home. But during rounds they decided that since he still hadn't started his sildenafil, they would start it in the hospital because 1) it's easier to get insurance to cover it and 2) the medicine will put him into congestive heart failure, and the hospital doctor thought it would be best to watch him when we started the med. I was a little surprised, since his primary cardiologist - the expert in PH and the one who actually did the cath - thought he should start it now. Charlie had an echo done at the hospital, which didn't show anything new, but something about it made the cardio change his mind about starting Charlie on the sildenafil. He said it would make him very sick and he should only have it a week before surgery. So...we came home today, after a 2-day hospital stay that ended up being the most expensive dose of ibuprofen ever.

I will be calling Charlie's cardiologist in the morning to check in with her about the sildenafil. We still don't have a surgery date - I don't know which person is dropping the ball on that one. Charlie has a follow-up at his ped's office tomorrow. He's been having repeated fevers for several weeks, and no one knows why. So it's another thing to look into. ...yaaaay.

The GOOD news...my boys are awesome! Charlie is growing bigger and stronger every day. He's picking up signs too! Also, he likes to roar. It sounds a little like a newborn lion. :) Brennan finally started really talking. He said his first word when he was only 8 months old, and said a few words here and there. But he wasn't REALLY talking until the last few weeks. It started a few months ago, when he started saying "more" and "uh-oh" all the time. Now he's saying new words every day! It's adorable. He says some out of the blue, like when he ran across the room, picked up my keys, said "Keeeeey" and then tried to leave! Brennan likes to practice words over and over again, and he's pretty pleased with himself when he pronounces a word correctly for the first time. He still uses sign, and his vocabulary is growing. He'd learn a lot more if we taught it to him better! We need to do a better job at that, especially for Charlie. Brennan has picked up a few signs from watching Signing Time, and he gets all puffed up when he learns a new one. A recent one was "bear". He loves his teddy bears! He has a favorite that he sometimes pushes in Charlie's swing. He also makes this bear bounce bounce bounce by holding the top of it's head and bouncing! It's super cute. Brennan also puts the bear on his bouncy turtle and bounces his own little bottom up and down. He cracks me up everyday. :)