Some pics

Both boys are "sleeping". Not really, just laying peacefully in their beds. Crazy, huh? lol

I thought I'd give a little update and some pics. Things are going very well. Caden is learning to speak better and better. He's really starting to put more words together and his pronunciation is getting better as well. Cameron is a rolling fool! He rolls over and over and over and eventually hits something and gets very upset. It's pretty cute. He bonks his head on the TV hutch a lot. :)

This weekend is Derby Days. There's little kiddy rides and such. I think we are going to take the kids after Paul gets home from work. :) I'll try to remember to take pics. Our camera is kinda broken. The little latches that hold the batteries in place are broken, so you have to hold it shut. Pain in the butt, but at least it works... kinda. lol

Old pictures

When uploading the pictures from our party last week, I found some old pictures on the other memory card. I couldn't believe what I saw. They were the pictures that I thought I had lost. Some of Caden pre-surgery. I knew I had them somewhere, but we had uploaded them to our old laptop, that died. I'm so glad I found them! Here they are. I think he looks like Cameron in some of them. :)

I took this one a few days before we went to KC for the first surgery. I can't remember his chest ever looking like that... His binky looks so big! I'm pretty sure there's another picture of him in the hospital, between surgeries, with that binky. On the right with the other pictures.

I don't know when or why I took this one. I think we already knew at this point that he would need surgery. I took several of his chest because I feared that I wouldn't remember his chest... good thing I did, huh?

This is of the back of his head, on or around 3/19/07. We were in room 21b, in the PICU. Don't ask how I remember these things. I think it's burned into my memory. This was only 5 weeks into our stay. We were there for about 12 weeks. It got so much worse than this, but you can see how the back of his head started to "creep up". I guess that's what you'd call it. The picture of me holding Caden on the right that says Mommy holding Caden in the PICU was taken the same day. If you were to look at him from the front, it almost looked like he had a cone head. Not anymore though! :)

Caden Day

Tomorrow is the day Caden came home from the hospital. It is also the day that our friends lost their little girl. I have mixed emotions about it, but we are planning on going out to dinner or somthing for Caden. Something fun for him, to celebrate his two year anniversary. We had a party last year. I almost cancelled it last year, because... well, I won't get into it.

Paul and I decided that every year, on that day, we would do something nice for him, and then one day he'll ask why. That part was Paul's idea. I don't know why we can't just tell him. It's not a bad thing.

On another note, I posted on my blog a little bit ago. Just upset rambling, really. FYI

Good news!!!

So, it turns out that it was mostly due to the weather. His pressures through the conduit look great! She said they are very low. We did the EKG, and that came back fine. Then we did the Echo, and she said that looked about the same as last time. He has moderate leakage with his Mitral and Tricuspid valves, and minimal leakage with his Truncal valve (the main issue). She told us that the average size conduit for an adult is about 20-25mm. If I'm remembering correctly, and he has a 19mm (I'm going to check his medical records tonight) then that should last him a long time!!! She said if he does have a 19mm, then the mostly likely case is that it's going to calcify before he ever outgrows it. We went over to the hospital for the xray to check for calcification, and she saw no signs of it. :) :) :) That's my happy dance! :)

Many times, if there needs to be something done to expand the conduit, they will go in through a catheterization and balloon or stent it. She said that they won't even think about doing that until the gradient (pressures) across the conduit get around 40, for the bottom number. Right now he's measuring 25/16. The numbers are supposed to be as close as possible, from what she said. The numbers represent the pressure in one of the top chambers, compared the one below it. I'm guessing the chambers in question are the ones on the left, as that's where his conduit is and that's the side that the aorta and pulmonary arteries stem from. So, they want to do a catheterization before an open heart in most cases, and he's not even anywhere close to needed the cath! That's the best news we could have hoped for!

Thank you all for thinking and praying for us and Caden. We don't have to go back until October 26th!!! Good job Caden! :)

I was able to get Caden in today, at 3:00. I'm starting to think that everything will be okay. I got home last night, and we went to the Chiropractor. He did fine there, just a little bit clammy. Not at all how he had been for the past week or two. It was also not as hot yesterday as it has been, either. Hmmm... I hate this!

After we got home, I got him down to his diaper. Partly cause he was trying to go potty so often, and partly cause we were eating spaghetti and I didn't want him to get it all over him. Well, he was naked for about 30 minutes. He wasn't clammy after that, and I tried to take his temp. I tried under his arm, but he didn't want it like that, so I told him I'd have to take it in his butt. (He knows that word, and thinks it's hilarious) So, he let me. (Paul was very concerned about this... LOL) It was 99.0 when he was completely naked (ok, diaper), and had been for about 30 minutes. I'm starting to think maybe he has had a low grade fever for a week or so, he was working on his two year molars, as well as having a little cough. He might have been clammy as a result of the warmer weather, a cold and his teeth. I think I over analyze things... you think?

Some information that I'm not sure if I shared before. Because Caden was born almost 10 pounds, his heart was significantly larger than normal Truncus babies. Usually Truncus babies are born smaller, because of growth issues in the womb. Usually, not always. We were lucky. Some Truncus babies don't get to 10 pounds until they are a few months old... much less at birth. During his first surgery, they were able (gathered from his medical records) to fit him with a 19mm conduit from his heart to his lungs. A lot of times, they are only able to fit up to 9-10mm, but we were lucky that his heart was already so big...

I have researched conduit size since then, and I have found that "adult" size is considered to be anywhere from 20mm-30mm. That's a whole centimeter difference, but if you think about it, there are small adults, and large adults. The way I think about it, he has a 19mm in right now. (They didn't change it during his second open heart surgery, they just repaired where he ripped his patch back open.) If he grows as scrawny as his dad and I did, that should last him till he's a pre-teen, maybe??? The main concern for me, is that his conduit will start to calcify. That's the reason that it needs to be replaced sometimes, is because it's been in for so long.

I will definitely post sometime tonight or tomorrow with the results from today's cardiology appointment. I am going to ask her about the conduit size and calcification, just to understand it a little bit better. Thank you all for your thoughts and prayers, I will be in touch soon.

Ashlea

Poopy Potty!!!

So, we've been working on the potty for a while now. Kinda touch and go. He has really started to take off with it though!

We've gotten to where we only give him M&M's if he goes potty. He gets 4 for a pee pee, and an egg from Easter filled with about 10 of them for a poopy. At least that was the plan... lol

Saturday, he said potty, so I sat down next to him on the kitchen floor, next to his potty. He sat down, and was talking to me a little bit. He pee peed and got very excited about it. He can feel it, and then he starts screaming, because he knows about the M&M's coming his way. :)

Then he got the "poopy" face. You know, the one where his little face turns kinda red? :) How cute! (Possibly only a mother or father would understand!) I asked him if he was going poopy, and he said yes! I didn't really believe him, but then he stood up and started pointing to the potty, screaming. I looked, and sure enough, he poopied in the potty! It was a big poopy too! :) So, I gave him the egg with M&M's for the first time ever...

He went the whole morning and part of the afternoon without ever using his diaper. Go Caden!!!!

Yesterday, we went to Kohl's and Paul got a bunch of clothes. We got Caden some big boy undies while we were there. He got to pick them out. Adorable! I remember when my brother was little, and his little briefs. It brought back memories! :)

This morning, when I left for work, I kissed all of my boys, and told them to have a good day. About 8:30, Paul called me and I missed it. He text me that I needed to call him as soon as possible. I (of course) freaked out and called him right away.

Here goes...

Paul was standing, unloading the dishwasher. Caden likes to help with this. :) All of the sudden, Caden starts running, ripping at his diaper like a mad man. (Paul's words :) ) He ripped his diaper off on the way to the potty, but he was already pooping. He got some poopy on the kitchen floor, on the seat of the potty (which he immediately sat on) and then from what Paul said, he only got a tiny bit of poopy in the actually potty. The point though, is that he did it! Paul gave him a Caden-sized handful of M&M's and proceeded to clean up the poopy smeared kitchen (and the back of Cadens' leg). He did it!!!

I am so proud of him, he's doing so great! :)

On another note, he goes back to the Cardiologist on the 11th. It's been almost 6 months already! I always get very nervous and anxious for a few weeks before his appointments. I have been freaking out a lot lately. He has been kinda clammy for about a week now. But, like Paul said, it's started really warming up outside, and he's a little boy, running around, using a lot of energy. His little head gets sweaty, which is very scary. He's not really tired though. I have heard on the online group that when it's time for another surgery, the kids get very tired all the time. Like, fall asleep during dinner tired. This is definitely not the case, so I am leaning towards him just being a little boy with a bad heart, who sweats more than the average kid. He's always working harder, and when he plays, it's that much more pronounced. I'm hoping so anyway. Please keep him in your thoughts in the next couple of weeks, especially on the 11th. I'm hoping that he gets a green light for another 6 months, and maybe we can even drop one of his meds! Thanks guys.

Ashlea

Updates...

So, the therapist came out last week and did her evaluation. There were two people, actually, and guy and a girl. I went home for lunch so that I could hear it for myself. You know how men are with remembering that kind of stuff. :)

They said that he definitely qualifies for speech therapy. He has a few problems:

-He condenses his "sentences" into one or two syllables, and that's why most his words don't sound like any real words.

-He leaves off the consonants at the end or beginning of words, or he says it backwards. Like Du for duck and ga for dog. I know that doesn't make sense, but if you heard him, you would get what I'm saying.

So, he is still using baby words, and he needs to be drinking out of a big boy cup as much as possible. It helps develop different muscles that he needs to be able to speak more clearly. The first real therapy session will be on the 21st at 11:00. I may or may not go home for an early lunch. We'll see. That's also the day that we are taking Cameron for his three month pictures. I can't believe he's already that old! He's getting so big.

He can old his head up very well by now. He can roll over, though not all the time. He likes tummy time a lot. He "talks" a lot, and he smiles a lot. He loves bath time, and Caden likes to help with it too! Things are going pretty good right now. I'm still pumping up a storm. I get about 8oz every 4 hours. That's almost double what he needs, but I'd rather have too much than not enough. He still has never had any formula!!! :) I think I could feed him for about a month on what's in my freezer!

I'll let you know how therapy goes when she comes out on the 21st.

The Return of Rainbows

Sounds like a good title to something. :) Children's book???

Rainbows was the therapy we used for Caden when we came home from the hospital. Sarah was awesome! He graduated a few months ago. Can't remember exactly when. Anyway, I called her the other day for consult. His speech is behind. Quite a bit.

The social worker came out yesterday. We just had to give her our insurance info and stuff like that. She has very little authority to say whether or not they will take his case or not, but she did say that from what she saw, he will most likely get speech therapy.

He just doesn't talk. He barely puts two words together and he still uses baby words sometimes. We really didn't think too much of it until we were hanging out with some friends of ours and their little girl was using complete sentences! Complete! And constantly. They're the same age... a week apart. I know that everyone says that once they start talking, you'll wish they weren't, but I really can't wait. I know that he's very smart, and anyone that's ever met him can see that. He just needs to learn how to communicate better.

The two speech therapists come out to the house next Monday to do the full evaluation, so we'll see. I really like Rainbow's. They did amazing things for him when we came home from the hospital, before he could hold his head up on his own. In the year she was coming out, he made soooo much progress. I can't wait to see what they have to say next week!

I'll keep you posted.

I have been taking more pictures too, I just need to get them on here. :)

So things have been going well. Caden's going through a growth spurt. He's getting so tall, and it seems like he's getting skinnier, but that's hard to say. I was thinking the other day that (knock on wood) Caden hasn't been to the doctor yet this year. WOW ok, so it's only a little over two months, but that's huge!!!! :)

Cameron had his surgery on the 23rd. He went to his checkup yesterday. It went well. Well...

Paul had to take Cameron (and Caden) to his 2 month checkup yesterday for his shots and such. That was in the morning. Then, right after lunch Cameron had his checkup from surgery. Paul called me after the appointment to let me know how things had gone. While they were waiting (20 minutes) for the Dr. to come in, Caden pooped. He doesn't like poopy in his diaper any longer than it has to be. (We need to start potty training for real) So, Caden's now fussy and poopy. Then, Cameron decided to blow his diaper out as well. :) Then the Dr. came in and had to feel around Cameron's groin for the hernias. He got breastmilk poopy (gross) all over his fingers. lol Paul said it stunk so bad in there between the two poopy diapers. He had left the diapers in the car, because he was expecting it to be a short follow up visit.

When they got back to the car, he put them one by one in the trunk to change their diapers. LOL I wish I could have seen that! :)

And now, some pictures for your viewing pleasure:

The two boys getting ready for the big game! :)

He's flexing for the camera. See his bruise from the IV? He's doing great though.

Caden LOVES to get out that hair gel and play with it. He rubs it on his face like lotion. LOL He did daddy's hair, and it actually looked decent when he was done! :)


Helping Mommy clean. I spray, he wipes.

Such a big helper... lol

Spiderman in his PJs.

Me and Caden on our day (a.k.a. Saturday)

Cameron sleeping on the couch. He's getting so big!

A few pics

Happy Big Brother!!!

What a happy boy!

In Papa's shoes... literally! lol