A new friend...

Little "Turnip" was born this week, and has Truncus. His first surgery is planned for early next week. If you would please stop by, and let them know that you thinking about them. Thank you! Click here.

Updates

Nothing much to report here. Pretty boring lately. Caden's doing really well. He had a little cough, but no fever or anything else, so we're just waiting for him to get over whatever it was that got him. He's learning new words every day, and he is getting more and more opinionated. He's going through a phase where he takes your hand and takes you all over the house, showing you different things, and how they work. He got our old TV from our bedroom, because Paul's parents gave us their older, bigger one. He loves to sit on his chair (from his great grandma :)) and watch the Wiggles. Over and over and over and over... lol. It crazy. He gets his fruit snacks and his water and sits in there watching. He only comes out when he wants more snacks or more water. It's pretty cute. :)

There are twin baby boys at daycare. They are really cute, and about 2 months old. He likes to rub (pet-really) their little heads and say "baby" :) It's cute that he's so gentle with them. I think he's excited. He knows what a baby is, and he also knows that there is one in my belly. He plays peek-a-boo with Cameron. :) He pretends that he's hiding him, and then he lifts up my shirt and yells "Baby!" He does it over and over. When he puts my shirt back down he turns his palms up and says "Baby go?" He doesn't know what a brother is, or who Cameron is, but he definitely knows something is happening. I hope he takes the transition well. I think we are going to continue taking him to daycare while I'm on leave. I'm only taking 6 weeks, so it shouldn't be that bad. He also only goes 3 days a week, so it shouldn't be too much of a strain on us financially. Cross your fingers!

I finally got Carol (day care) to decide on a price for the two of them. It's not even double! We are very fortunate to have such a sweet "Grandma" for him to spend the days with. She knows how expensive Caden can be, and it's nice of her to consider that. I expected it to be at least double, with an infant and all. I'm not saying anything else about it, but I'm definitely sticking with her as long as possible. :)

Bowling

So we went bowling last night with some friends. It was really fun. Caden did pretty good. He liked to sit down and push the ball. He kept screaming "ball, ball, ball" and he didn't understand why he could only do it twice in a row. He looked so confused when someone else's turn would come. :) He's so funny. Paul was helping him, and it was really cute. :) I didn't bowl, partly because I really suck at it, but mostly because my center of gravity is already off balance, I don't need to be throwing a 10 pound ball around. :)

Birthday Fun!!!

Caden had a great day! We made the rounds all day long. He got a kitchen, a working candy bear claw thingy, a bulldozer, an ATM, a Mega Bloks wagon, Mega Bloks blocks and clothes, and a Mega Bloks train... and some food to go with the kitchen. He also got a toy car set that came with a toy drill and screwdriver set. The cars come apart into big pieces, and he knows exactly how to take them apart too! I think I covered most of it. He loves to clean and cook. He has his own cleaning set, so now he has his own cooking set too!

Paul was making breakfast yesterday, and got out the eggs. He started cracking them and put them into the skillet. You know how to cook eggs, I won't go into it so deeply. :) Caden ran over to his kitchen, and grabbed his whole eggs. He showed them off, I guess to let us know that he knew what they were. Then, he found the little plastic fried egg and put it in his skillet. His little burner makes a sizzling noise when you put the skillet on it. :) He got out his spatula and was cooking his own breakfast. It was the cutest thing!

We have pictures scheduled for Tuesday afternoon. We are doing a family Christmas pic, and then Caden's 2 year pics. I'm excited to get that done! He hasn't gotten his pictures taken in a while. The ones on my desk at work are so outdated. Not for long though. :)

Thank you to everyone for all of his gifts. Please, if you are going to do something for him for Christmas, consider putting money into his savings account instead of gifts. He really doesn't need any more toys. He would probably beg to differ, but he'll thank us in the long run!

Birthday and Potty

Caden's birthday is on Saturday. He will be the big 2!!! We're not having a big party or anything, but we are getting together with family memebers for lunch and dinner. Then we're going bowling on Sunday. I think he'll have fun. He's got enough presents coming, that's for sure! :)



This is the picture we sent in for his birthday announcement on the morning news. How sweet! Friday morning around 6:45 on KSN channel 3, for those of you in the viewing area. :)

I just thought this one was really cute. He was actually trying to see the TV behind me. I was playing The Wiggles for him. He's a freak about the Wiggles. 5 times a day... WOW.

He's been doing pretty good on the potty. Kind of tapered off a bit now, but he gets excited if you ask him to go. He was so excited when he went potty. His chair makes music when he tinkles. :)


This was less than 5 minutes later, when we made him go to bed. He was screaming "potty!" over and over again. Awww... he's a devoted potty goer. LOL

Cardiology Report

Sorry I forgot to update about the cardiologist appointment the other day. No news is good news, right? Yeah!



This is what she said:



No ASD anymore (YAY)



Minimal (if any) VSD leakage (YAY)



All chambers are enlarged, but they always have been



Every valve leaks, Tricuspid and Trucal valves are mild-moderate. Mitral valve is mild.



The highest pressures she was able to read this time were what was in the "normal" range last time-maybe indicates that things are even better than last time???



He actually did really well throughout most of it. He watched the Wiggles and was doing hand signs through it. Kinda funny, I'd never seen him do that. Towards the end, when they look at the top of the heart, he started crying. He doesn't like it when they do that part. She has to push the wand down and it pushes into his chin/jaw. He hates that part. He was such a good boy though, for the EEG and everything! I was very impressed! I realy didn't have to go, but I worked through lunch to kind of make up for the time off.



She left his meds the same, going to let him kind of grow out of his dose, and hopefully one day we'll be able to stop giving him meds all together! I was hoping she'd go down, but that may have been a little too much to ask. We have to go back in 6 months. I was hoping for 9 or 12, but then again, maybe too much to ask for.

Overall, he looks just the same as last time, if not a little bit better. :) I'm so proud of little man. Not that he could help it, but still. Good genes, I guess. :)

Cardiologist

Caden goes today to the cardiologist. Since I have to miss half a day of work tomorrow, Paul is trying to convince me that he can do it by himself. Well, I believe that both of them will survive, but if any of you have ever been through an ECHO with a near 2 year old, it's not fun! I'm hoping that this time, he handles it better than the last few times. He just hates that goop all over him, and she has to push that wand thing into that dip his collar bone, pointing down, to see the top of his heart. That's usually the last thing they do, but let me tell you, it's the grand finale.

The appointment starts at 3:30, but first they have to weigh him, and she comes in to ask a bunch of questions... ie: "does he pass out, does he sweat a lot, does he seem to be sleeping more than usual..." Yada yada yada. I know that some parents may not pay too close attention to that stuff, but you bet your butt if he started showing signs of heart failure, I'd be in there before his normal appointment was scheduled!!!

Anyway, then she has to listen to him, feel for his liver, push on his chest a bit (not hard), blah blah blah. Then we go to a different room, where they pull out the ancient TV and VCR. The nurse gives him an EKG, the doctor comes in a few minutes later, looks at it, then turns off the lights to do the actual ECHO. Well, Caden might not take it so bad if he didn't have to watch the same Barney video over and over again. But, last time we remembered his blankie, and he did better having that to rub on his face. He just hates to lay there so still for that long. Usually by the time they're done with the EKG and the ECHO, it's been about an hour or so of him laying there. That's not easy for any of us, especially Caden!

I haven't decided if I'm going to leave a little bit early today or not. Maybe if I take a really short lunch, then it'll make up for it. The ECHO won't start till 4:00-ish, so if I leave at 4, then I'll only miss one hour today. Then I'll miss three hours tomorrow. Maybe nothing else will come up the rest of this week. Cross your fingers for us!!!

Updates

Well, not much is going on really. Caden's still doing pretty good. No coughs or sneezes lately. YAY!!! I don't know if I posted this already or not, but he's started doing this REALLY cute thing!

We usually get him all ready for bed and let him play in the living room for a half an hour or so. Around 8:30, we'll ask him "Caden are you ready for nite nite?" and he'll go find his blankie and walk to his room. We get his binkie and water and meet him there. Then we pick him up and set him in the middle of the crib and he stretches to give us kisses. Then he waves at us while yelling "Nite Nite!" He says it over and over. We turn off the light, close the door, and head back to the living room. He yells it a few times more, and then goes to sleep. We still have the monitor in his room (paranoia? Maybe) and you can hear him over it just wishing everyone good nite. He's so sweet!

He goes to the cardiologist on Monday. It's been six months already. I really think she's going to be impressed with him. He's doing so good. He's not sweating or sleeping a lot. He's pretty active all the time, and he's just doing great all the way around. I think his heart is doing great. I think it may have something to do with the double stitching Dr. O'Brien did on his last patch he got. I hope she'll lower his meds or stop one of them, or at least tell us not to come back for 6-9-12 more months. Hopefully 12, but I'm betting on 6 (like now) or 9. We'll see.

He goes in for his first Synagis shot on Tuesday. Blah. He hates shots, and I don't blame him. It's actually two shots.

He's going to be two in a few weeks!!! Eeeeeek! We need to figure out something to do for his birthday. I think we're going to take him bowling. He loves balls and knocking things over, so as long as he doesn't run down the lane, I think it'll be a big hit. :)

I don't know how many of you read my blog, but Paul and I did go to meet with a lawyer the other day. I don't want to get into it again, but if you want you can read it on my blog.

I'll let you know how the cardiologist goes.

Not much to report

Caden's been doing pretty good. He's had some allergies. Sneezing and a little bit of coughing. He's not had labored breathing or anything, so I we're not too worried. He's got a cardiology appointment on the 3rd of November. I can't believe it's been 6 months already. WOW Time flies. I hope she tells us that we can quit one of the meds and go a year between appointments this time. I really hate going to the cardiologist. I'm sure Caden hates it more.

We're going to the pumpkin patch tonight. I charged up the batteries in the camera so that I could take a bunch of ictures. I'll have to post them. I'll try to remember to have Paul take some preggo pics of me too. I'm 27 weeks today. He's getting big enough that from the outside, you can feel his foot going across my stomach. He's big. I know he is. A little monkey. An adorable monkey. I think Caden's a monkey too. Just so cute.

He's been doing this absolutely adorable thing lately. At night, when it's time for him to go to bed, we say "Caden, lets go night-night." He goes to find his blankie, we get his binky and his water, and we all meet in his room. He stands there, ready for the crib. Paul picks him up, sets him in the middle of the crib, and we all say goodnight. It's so cute, cause he sits there, waving, saying "nite-nite" over and over. W say it back a couple of times. Then we turn off the light and close the door. Over the monitor, you can hear him for another few minutes, saying "nite-nite." But he kind of screams it. It's so cute! He doesn't throw a fit anymore. Even if we do it a little bit before bedtime, he's still okay with it.

He's such a sweetie. I'll try to remember to post pics soon.

Fun!!!

We had a great time in Denver! Caden did great on the plane on the way there. He watched his DVDs and ate raisinettes and didn't even care about the noise or his ears popping.
Daddy and Caden. The flight attendant let us move to the back of the plane to have more space. How nice!

We went to the Rockies game the night we got in, and Caden made it up on the Jumbotron! We got a picture, he's in the upper right hand corner. The guy next to my sister won the fan appreciation prize (of course the next seat over!) and so Pam, my step-mom, scooted her way over so Caden could get in on the big screen love. :) It was so cute.

At the Rockies game-in his new outfit.

We spent some time in a small town outside of Colorado Springs, near Pike's Peak. We had a great time there too. Walked a lot, and I got really tired, but it's good for you. :)

Caden's new shirt.

Riding the helicopter was a favorite. He just giggled and giggled.

The fountain sprayed water all over him and he loved it! He's obsessed with water and ice. :)

The cutest little cow ever!

I figured I'd give you something to laugh at. :)

Eating his first chicken leg ever!

Pushing buttons at Grandpa's work.

I hope you all enjoyed the pictures! We had a great time, and I can't wait to get back out there again. Except next time it will be with two kids! Ack!

Denver... here we come!!!

We are leaving for Denver on Saturday afternoon. I am so excited! I haven't seen my brother and my dad in months, and I haven't seen my sister since Christmas! She'll be amazed with Caden. I'm being the mom that makes a list of everything to take. Is that bad??? I've been working on it for about a week now. Paul makes fun of me. I'm a list person, that's all. :)

I hope he remembers everyone from last time. We bought him a portable DVD player, and got some DVDs for the flight. Thankfully, it's only a little over an hour. I hope he's occupied. I won't be able to do much with him (sitting on my lap), cause of the belly and all. It's supposed to be nice out, so maybe he can look out the window too... no clouds. I need to remember something for him to chew on, so his ears don't hurt. Hmmm... I'll put that on my list. :) Still adding things, and I'm sure I'll forget something anyway. I always do. We're trying to do everything carry-on. We'll see how that goes. lol I got some space bags to try to fit more stuff. I've secretly always wanted space bags, so it kills two birds. :) If any of you have suggestions other than books and dvds, let me know!

Oh my goodness!

I've never won anything before... let alone a blog award! This is so exciting! Amy, Kaden and Angel Ava's mommy, has awarded me this award. :)

Okay, so it's my understanding that with my acceptance of this award, I must complete a few tasks.

1) Think of at least 5 bloggers that you believe to be “Brainy Bloggers”

2) Post it on your blog for all to see! Let them know you’ve awarded them by email, twitter, etc or via a comment on their blog!

3) Share some linky love and link back to both the person who awarded you. http://www.kadenboeckman.blogspot.com/

4) Come back to the Brainy Blog Headquarters to sign our Mr. Linky and then pass it on! I would like to pass this award onto the following brainy blogs:

1.) Charlotte's Mommy at http://www.charlottesjourneyhome.blogspot.com/ (Charlotte)

2.) Caralee at http://www.sydneybaker.blogspot.com/ (Sydney)

3.) Cindy at http://www.russcindyg.blogspot.com/ (Dylan and siblings)

4.) Melissa at http://www.momoftwolittleones.blogspot.com/ ( Morris Family)

5.) Sara at http://www.botmafamily.blogspot.com/ (Zach)

I could only pick five blog friends to pass the award onto, but that doesn't mean that I don't love reading up on all of you. In fact, I check up on all of you regularly. :) Don't let that creep you out. :) Thank you Amy, for thinking of us.

Ashlea

More Medication

Caden just went to the doctor with Dad. They had to take xrays, cause he has been breathing pretty hard for a couple of days. He has been teething for a few weeks, and he has all four of his pointy teeth coming in. You can see them all, and he is slobbering and his nose is running and he had a 99.4 temp last Friday. That's really low, so I figured it was related to teething. I think it was, cause he hasn't had a fever since. At least it wasn't high enough for me to want to check it. He started with a little cough on Saturday, and a really runny nose, but it was watery-clear, so again, no infection or anything. I thought that while he was sleeping, his nose was draining down his throat and congesting him. Well, Sunday was about the same, but not any worse.

Monday I was at work, and Paul called to say that Caden had a hard time falling asleep for nap. He was kinda cranky all day. (Caden, not Paul :) ) Well, by the time I got home from work last night, he was having very labored breathing and not really too much of a runny nose. He didn't have a fever or feel warm unless he was crying, which doesn't count in my book.

So, we gave him a breathing treatment of a safer form of albuterol that we had left over from when his lung collapsed a few months ago. That helped sooo much. We put him to bed, and he slept fine until about 2:00. He woke up, so we brought him into our room, and he was coughing a bit (it sounded horrible) and unless he was in a deep sleep, he was having very labored breathing. Paul called this morning to make an appointment with our pediatrician, and they tried to get him at 1:30. Paul told them who Caden was and his "issues" and they were able to squeeze him in at 9:30. Go figure. At least we get VIP status somewhere... and where better?

His sats were 96... YAY!!! Well, they then gave him a breathing treatment and took an xray. The first one didn't take, so they had to put him in that horrid xray contraption again. He got really mad and started thrashing. He busted his lip and was bleeding all over the xray machine. The nurse said that no one had ever done that before. Of course not. Caden's job is to do all the "firsts".

He has a little area of (not pneumonia) infiltrate in his right upper lobe. Same place he had it when he was in the hospital. So Paul's at Walgreen's as I type this. He's getting a broad-spectrum antibiotic, Xopenex (albuterol), Mucomyst (same as in May), and some other steroid that Paul didn't know how to spell. The Dr. said that his lungs don't look nearly as bad as they did in May, so that's great news. I'm so glad we decided to take him in when we did. Paul said he was in a great mood this morning. That always happens. We are nipping it in the bud, and I am happy about that. Any hint of anything and I freak out, but that's okay. We are going to Denver on the 20th. Go figure! Every time we go out of town, he gets some lung issue. At least the insurance company purchased the nebulizer last time, so we don't have to rent one. When we gave him that treatment last night, he had the mask pressed all the way to his face, and he didn't even cry. It was like he knew it was going to help him. He's such a sweetie. I can't wait till he can talk to me, and tell me what hurts, or that he can't breathe. But then again, I'll be wishing that he couldn't talk yet. :)

We are supposed to carry on for 4-5 days, and call the doctor with an update. I think we finally found a doctor that agrees with us, and takes us as seriously as we should be taken. I like him a lot, and am very comfortable with his treatment plan. That always helps. He knows that we don't call unless we really feel we need to, so I think that helps.

On a more positive note, Caden now tries to sing his ABC's. If you start singing it, he'll start dancing and he'll sing it himself. None of the letters are right, but he has the melody down, and you can definitely tell what he's singing. It's very cute.

Opinions please...

I've been thinking a lot lately about something. I feel like being pregnant with this baby, things are being done right this time. As far as checking the organs and stuff. I feel like with Caden, things were just overlooked. Like they did the sonograms too fast and checked him too fast and all that. A while ago, my mom was saying that we should consult a lawyer for medical malpractice. Let me tell you a short story, with the major details, and you tell me if you think it's worth a shot or not. My goal is not to get a bunch of money, or to be able to retire at age 25. My aunt said that we don't want another baby to have a missed diagnosis, or to pass away because of something that I could have prevented. I just don't know. It's kind of an ethical question.

When you're pregnant, you are supposed to have a sono around 18 weeks. This time, I was 17 weeks, 6 days. One day, no big deal (they checked the heart well). With Caden, I was 18 weeks, exactly, according to the date on the sono pics I kept, cross referenced with pregnancy calendars that show days and weeks of pregnancy. They didn't catch it with Caden, which we all know. When he was born, we were at the Birth Care Center, associated with Wesley Hospital. The pediatricians that checked him at birth said that everything was fine. They checked everything, listened to his heart, and everything was fine. The first doctor to check him was a male resident. Then the attending came in, and I remember it distinctly, because Caden was holding his head up, and she made a comment about how "is he a day old, or two months old?" and was laughing. She checked him too. Nothing.

When he was born, he was too fat to get circumcised, so we had to take him on Dec 15, at about 3 weeks old to get it done. They supposedly listened to him then, and heard nothing. It was not our regular pediatrician that did that, but a man (the attending pediatrician was a female). We weren't in the room when they snipped him, so I don't know if they checked him or not. They should have, if they didn't.

We took him in for his 6 week checkup, some time at the beginning of January 2007. Paul's mom went with me, and a female resident listened to him, saying that he sounded fine. The female attending came in a checked his hips like they do, and I remember her listening to his heart. Nothing.

From the time he was born to when he got diagnosed, he had labored breathing. To the point that he was "shrugging" with each breath. His nose was flaring and his head would bob. Well, now I know that that's a sign of heart defects, affecting the lungs. In the first two weeks of his life, he went from 9 lbs, 12 oz down to 8 lbs, 9oz (or very close to that). We had a nurse come to the house to check him when he was two weeks old, and she didn't detect anything either (that's how I know how much he lost). She said it was normal to lose a little bit of weight. Well, that's over a pound, and at the time, that was 12% of his birth weight. I don't know if that should have been a red flag or not.

He got diagnosed on a Monday (at 8 weeks old), cause over the weekend, he developed a terrible cough. Turns out it was heart failure, and his lungs were saturated, so he couldn't breathe. Well, He had an appointment scheduled for that Thursday, but I called and they were able to get him in that day. When we got to the pediatrician, the nurse checked (for the first time ever) his O2 sats. They were 74. She checked it like 3 times, and when the same female attending as last time came in, she listened to him, got a worried look, and left. They admitted us, so we went across the street to the hospital. We were there, getting treated for bronchitis, and a different resident (wow, I know) was just passing some time and asked if he could listen to him for a sec. He's the first one that ever heard the murmur. He was officially-and correctly-diagnosed later that night.

My thing is this-if someone would have caught his heart defect and he would have had surgery at two or three, even four weeks of life, then his lungs wouldn't have had a chance to get so diseased (why they thought it was bronchitis). He had his first crisis at the beginning of March because his lungs couldn't handle the increased (corrected) blood flow. If he never would have had the chance to go into heart failure at 8 weeks, then his lungs may not have diseased at all, therefore no crash, no ripping the patch back open, no heart cath, no second surgery, no resuscitation, no ECMO... yada yada yada. And who knows if his future surgeries and recoveries will be more difficult as a result of that???

What do you think? I think there's a statute of limitations, but I'm not sure what it is. I should look it up. I mean, is it even worth a consultation? My OB did everything he was supposed to, but did the sono tech screw up? Should she be held accountable? Which resident? There were 2-3 and I don't remember their names. We could find out, I'm sure. Should it be the attending, who was overseeing the residents? I just don't know. I feel like I wouldn't have had as much emotional stuff this past year and a half (and in the future) if he wouldn't have had all those complications.

I mean, who's to say he wouldn't have had any complications anyway? Maybe he would have, but maybe not. Not to mention the enormous medical bills (which have been paid for by insurance mostly). He shouldn't ever meet his lifetime maximum of 5 million, but he's already over 1 million. What if he gets a job somewhere when he's older, and that's their insurance and he can't get it cause he's over the maximum? I know, I'm projecting way too far out there, but I'm just asking.

Thanks for you input. I'm really not looking for a get-rich-quick thing. That's part of the reason I haven't done anything yet.

Thanks guys,

Ashlea

Bubble Mowers and Bunk Beds.

We were out and about this weekend, looking for a solution to the soon-to-be bed problem in our house. We were thinking about maybe doing bunk beds for the boys, and Caden can just use the bottom bunk for a couple of years until the new baby is ready to move into his room. Well, we still haven't completely decided, but we think we are going to build Caden a bed, and then build an identical one when we need it. I found some plans online, and I know how crazy we sound. Paul and I are actually accomplished Do-It-Yourserlfers, and decent woodworkers, so I think we can get it done.

Depending on how it turns out, I'll post some pics. LOL

While we were out, we stopped by babies r us. It was kinda fun to see all the new baby stuff they have out, and how ridiculous some of it is. It reiterated the fact that we have everything we need, and not to buy anything. :) We did, however, find a really cool bubble mower that was only $15.99! I had a 20% off coupon, so it was like $13 or something. We put him down for a nap when we got home, and put it together. When he got up, he saw it, and I thought he was going to faint. :) He screamed like a crazy boy and ran to it. He didn't push it fast enough to make the bubbles work for a while, so we had to show him. Once the bubbles started, he was in love. He won't even take a bath if it means being away from that thing. It's sweet, and a great buy for anyone with small children.

I'll try to get picks of it on too. :)

Funny boy!

From Caden's Myspace page... (yes, I copied and pasted... I'm lazy today)

I'll give you some background first...I'm pregnant, right?

So, I like to eat cereal every morning. (If I don't, I'll starve by noon) My favorite is Lucky Charms. I like the marshmallows. :) The thing is, so does Caden. So, I try to eat my cereal before Caden gets up in the morning, or he'll stick his whole hand in my bowl and "fish" for the marshmallows. Kinda gross, and he won't stop till they are all gone. :)

Well, this morning I was almost done, and I heard him start "talking" over the monitor. I knew he was fine, so I waited until I had finished my cereal. I got up, walk across the house, and open his door. Caden has known for some time now how to take off his diaper. And this morning, he was standing up, sans diaper, with his winkie through the crib bars... peeing all over the floor. I think he was aiming for his diaper (that he threw out of the crib), as the pee was concentrated around it.

I thought it was just a little bit on the rug, so I got a small rag and started wiping it up. Once finished, I stood and walked closer to the crib to pick him up. Well, the little bugger must have "changed directions" cause the majority of the pee (hee hee) was directly underneath the edge of the crib... and my my foot.

He was so proud, it was so funny.

--------------------------------------------------------

Caden got a haircut last night on the way to Nonny and Grandpa's house. He was so still and quiet through the whole thing. He didn't squirm at all, and he actually thought it was pretty funny for most of it. He cracks me up.


His little hand didn't move for a long time. He was concentrating. lol



Caden's sweet little smile! The lady thought he was something else!
That's when she started in with the buzzer. :) Can't help but laugh out loud when I see this one.



I thought I'd add in the mower one, cause he was pushing it around at my mom's. That was a few weeks ago, and he is now obsessed with lawn mowers. He has a name for it, but it doesn't make any sense. He gets so mad if we pass one and he doesn't get to push it around. We went to Lowe's the other day, and they had a huge row of mowers out front. Caden about lost it, he was so excited!

He also has a new thing about helping me clean. Saturday is my "deep clean day" and he always likes to help. I have since filled a squirt bottle with water for him. I keep it with the other cleaning bottles above the sink, because he thinks his is "for real" that way. He gets his bottle when I get mine out, and he gets a rag. We both spray stuff and wipe it down. He usually does the cabinets or the floor, and I do the counter and the top of the stove. He actually sprays and wipes it down. He also has a thing about vacuums. He loves them. We have a small vacuum that I use for the hard wood, and if I let him, he'll push that thing around all day. If we go to Walmart, and pass the vacuum aisle, he freaks! Screaming and pointing at those marvelous things. LOL


He loves to help you empty the dishwasher. He'll hand you one utensil at a time... knives removed first of course. It takes forever to empty the dishwasher that way, but he likes to help.


I caught him on the laptop the other day. It was turned on, but he got to the Internet all by himself. He's amazing! :)








Just like Top Gun :)

Just a cute picture.


On another note... we went to the sonogram yesterday. I've posted pics and the findings on my blog.

Caden's friend Dylan

Baby Dylan was born on Friday last week, and has either Truncus or Aortic Valve Artesia . He goes in for surgery tomorrow (Wednesday) morning. Please visit their page and just let them know that you are thinking about them and sending prayers their way.

Thank you!


russcindyg.blogspot.com

Graduation!!!

Sarah (the therapist) came today, while I was at work. Paul called on my lunch break to inform me that on the next visit, Caden is going to graduate! I am so excited! I think that's the best birthday present I've gotten so far. Awww... I think I'm going to go home and be there for the "graduation." That's so cute! I wonder if he gets a little hat. Probably not, but it'd be cute! I will try to remember to take pictures, I've been really bad about that lately.

I don't know yet when it is, I'll have to ask Paul. She said he's all caught up now. It's a miracle, from where we were just 15 months ago. Her first visit was May 14th, 2007. He's come so far. I'm so proud of him. I'm going to be a mess at his kindergarten graduation... LOL

Results...

So, we went in (a little late) for his appointment today. They made him wear an ankle bracelet and everything. Well, they did the ultrasound on his groin first, and he did great with that. He didn't bother her, and when she turned on the sound to hear his pulse, he just looked at the monitor and watched. Then we had to take his shirt off to do his neck, and that wasn't so great. As soon as he saw the wand, he started freaking out. He didn't cry for long once it was on his neck, but the sight of it scared him, I think. Thankfully, the neck part didn't take as long, and she took the results to be read before we left.

The Dr. looked at them and decided that there is no evidence of any clot anywhere! I had a feeling that after months of lovenox and over a year of daily aspirin that it would dissolve. I'm pretty happy about it. Not a huge deal, really, but exciting none the less.

Appointment

So... Thursday, Caden and I go to Wesley for an appointment for an ultrasound. Not the kind you are thinking... :)

When Caden had his first surgery, 17 months ago (WOW) they had an Art Line in his Femoral Artery in his left groin. Well, he only had it in for a week or two, but it created a blood clot. He also had a smaller clot in his right neck from one of the IVs.

If you remember, we gave him lovenox (blood thinner) shots in his thighs twice a day for months after coming home from the hospital. We went back to KC last summer and they did an ultrasound on his neck and groin. They decided he didn't need to be on the lovenox anymore, but instead we started giving him a low-dose aspirin everyday. Well, that's been about a year now. When we went to the cardiologist in June, I asked her about how long he should have to take that. So, she decided that after his lung popped back open, and things were going better, that we would schedule another ultrasound and see if we can stop the aspirin. Of course... it's the cheapest drug he's on, so that's not the concern for me, it's just that I want to make sure that the clot truly is gone before we stop giving it to him. I don't want it to get dislodged and travel through his body.

When we went last summer, they said that they were unable to find the one in his neck, and the one in the groin was smaller than it was previously. Hopefully that trend continued!!!

I will let you all know how it goes.

Finished!!!

I forgot to tell you all that we finished our basement. I have been really lazy lately (I'm blaming the baby, lol). Anyway, we finished the basement about a week and a half ago. As soon as we got the carpet in, we couldn't help ourselves. We were so close. So, we built some shelves in the corner for the fancy new TV and DVR. It looks pretty good down there. Except for the humongous weight machine in the corner that a certain someone thinks he's actually going to use. ;) Oh well, if we took it apart, it would take up most of the space in our storage room. I haven't taken any pictures of the finished product, but I will try to remember to do that tonight or sometime soon.

Have a great day!

Ticky Ticky Ticky!

Caden's new and favorite game is tickling people. He'll walk up (or crawl over) and stick out his index finger. Then he'll start to tickle you wherever he can, and he says "Ticky ticky ticky" It's the funniest thing I think I've ever seen. He gets this look on his face too, that's just perfect. Like he's waiting for you to laugh. It's hilarious, and you can't help but laugh. His favorite place to tickle is your stomach, after he lifts up your shirt. He did that to Paul the other day, while they were sitting on the couch together. Caden lifts up your shirt just high enough to see your belly button, and then he sticks his finger in it, and goes to town. It's so funny.

Paul's Dad and step mom came over last night, after she had watched him for the afternoon. We ate dinner and were playing with Caden. He is getting so good at walking! It has literally been a few days, and he's ready to walk full-time. Which is great, cause daycare will be cheaper when he is walking! If you ask him to stand up, he will... by himself in the middle of the room. And then he'll just start walking. Sometimes he has to start over again, cause he doesn't have good balance, but he's doing amazing! He's getting to where he wants to walk more than crawl. He walked all over the house last night. He didn't like the transition from the carpet to the tile too much, but he kept on going. I will have to get video of it, if I can ever figure out how to get it on my computer. That's been a struggle for me. :(

Walking better!

Right when you start to not think about it so much... bam! He's actually doing a lot better with it. He does it without really thinking anymore. It used to be that you'd hold his hand and pull him so that he'd walk. Now, you hold one hand, and he's pulling you, telling you where he wants to go! He's started standing at the ottoman, and just walking over to his toys. I haven't counted, but I'd say the most he does in a row is about 20 steps. He knows when to slow down, and how to pivot (slowly). He was sitting the other day by the chair, and instead of crawling over to the ottoman and then standing up, he put his hands on the floor, stuck his butt in the air, and stood up... and started walking!!! I couldn't believe my eyes! It was amazing. He's getting to where he realizes that that is just as fast, if not faster than crawling. The therapist told us to hold a washcloth, and let him hold the other end. That way, he feels like he's holding something, and we can let go without freaking him out so much. That works, but sometimes he notices that you aren't holding on anymore. He is still crawling most of the time, but he is just building his confidence right now. Have a great day guys!

Carpet!!!

So, if you didn't know, we have been "working" on finishing the basement. We gave ourselves to Thanksgiving to get it done, so it seems that we are right on schedule! Just kidding. We went to Lowe's and ordered the carpet, and then they measured, and then we had to go pay for it, and then we waited for almost two weeks for them to call and schedule the install. It was scheduled for Tuesday afternoon, and he called me at 8:30 in the morning, saying he was on the way. So, why do they even schedule it? If they are just going to come whenever they want? Sooooo annoying. The whole carpet-getting process took about 2 months. Yep. Good thing our deadline was far out!

It looks great though. Of course, Paul felt the need to go out Monday night and buy a big TV for the basement. He "wanted to make sure the kids would have something to watch down there." Isn't that sweet??? Heehee. So, the second (third) living area should be completed within a couple of weeks. We need to paint and put up the trim, and paint the finishing touches, but I think we are scarily close to being done. I am soooo excited!!! There has been furniture (coffee table, love seat, arm chair etc.) in the office for 2 months now, and you can't even walk around in there.

We are actually going to move the office downstairs and turn that room into the nursery, so that Caden doesn't have to give up his room. I don't want to give up the guest room, either. It seems like when we have company, we REALLY have company. So the basement will probably be used for people to sleep too. I will post pictures as soon as I get around to it.

Another Xray

The doctor's office called yesterday and they wanted us to bring him in this week to check his lungs again. Well, Paul took him in this morning. The xray machine they use is this contraption that you actually put the baby in and this clear plastic body armor goes around the baby's whole body. Their arms have to be straight up and their legs dangle through the bottom. He hates it. They have to snap the shield thing, and it's pretty tight. He always hates it, and quite frankly, I'm glad Paul's the one to take him most of the time.

Of the two that they took, the second one didn't turn out, so they had to put him back in the machine. Well, that one took finally. They looked at the xrays and they decided that these looked even better than the last ones, taken last week. We are going to continue with the medication for another week or so. I wish I could see what they look like, but that's ok.

Caden is going to get to see his little brother or sister today!! Assuming my doctor will do an ultrasound today. I'll ask if he doesn't offer it.

I'll keep you all posted as time goes on.

Progress!!!

So, I was supposed to take Caden to the doctor on Wednesday, tomorrow, for an xray to check his lungs. Paul called them yesterday to see if they could get him in so that I didn't have to take off work. (Paul is off every Monday and Tuesday.) They were able to get him in yesterday, and they took the xray. From what Paul said, the nurses were so happy to see him in a good mood, and when the doctor walked in, he was pleasantly surprised at how happy and energetic Caden was. He's doing so great! They looked at the xray, and the collapsed lobe looks a lot better. I obviously didn't get to see it, but Paul was saying that you really have to look at it in order to see the shadows. Last time, two weeks ago, it was bright white in that section. He said that you can barely even see the lungs!

We went to a friend's house last night for a birthday BBQ. The ones with a little girl Caden's age. They had a blast! She just loved him! She was hugging him and kissing him and it was just so sweet. The two of them were playing in her room, and you could just hear them laughing at each other. That is such a sweet sound. It brings tears to my eyes thinking about it.

He had a bunch of food, and then they broke out the cake. Chocolate with chocolate icing and little kiss things on top. He was a maniac! He ate the entire adult-sized piece! He's crazy. He was crazy, after that! Hehehe. Sugar buzz.

He pushed my jewelry armoire over yesterday morning while I was at work, and when we got home from the BBQ, I was re-organizing the drawers. I had them lined out on the bed, and he was sitting there on the bed watching me. He would lean over, real quick and grab an earring or something, and then try to get away as quick as possible. He would jump and dive into the pillow. He thought it was hilarious, and he just kept doing it. He's so funny. He knows when he's not supposed to have something, cause he tries to hide it, or hide himself. He does the whole ostrich head-in-the-sand thing pretty well! :)

It's obvious that he feels a lot better. He is back to his crazy self. He's making faces again. (which he wasn't doing for a while) He makes this really funny face. It's his excited/surprised face. I'll put a picture of it on. It's from his party at the beginning of May. That was pretty much the last time he was feeling this good.

Feeling Better

We decided to go to California, and we had a lot of fun. We dropped Caden off at Paul's dad and step-mom's Friday night. We had to tear ourselves away, but we got out of there around 8:30 or so. We called non-stop, of course. He was fine! He started that new treatment Friday night, and it had an amazing affect on him. He doesn't cough anymore, even at night! He is eating again... though I don't know how much he weighs. You can just feel it on him though, that he has gained some of it back that he lost last week. He lost over 1/2 a pound last week. Poor guy. His little tummy sticks out a little bit more. It's cute.

Man, you can tell he got spoiled while he was there!!! We got back to the KC airport last night, and drove to Wichita to get him. When I got him up this morning, he wouldn't eat his medicine for anything! He thought he needed a poptart or something. We usually put it in some rice or oatmeal, and give it to him that way, but it's like he can taste it now. I had to draw some up and squirt it into his cheek. He is doing much better though. He only coughs during/after the treatments, which is good, since that's the point. He got to play with his cousins, because they came down over the weekend. He had a blast. They said they put him on two phonebooks, and strapped a belt around him to sit at the table, and he thought he was hot stuff... of course. That's a funny thing to imagine.

I am so glad he's feeling better!!! We go back to the pediatrician next Wednesday to get another xray. If it looks better, we'll stop it, if not, we'll have to go to the pulmonologist. Everyone keep your fingers crossed!

Now I'm REALLY laughing!

Paul's step-brother-in-law is a pharmacist, so he called him. Our doctor has been on the phone all day talking with drug companies, trying to get samples and what-not. Well, Paul's "brother" said that there is another medicine that is rarely used, but essentially does the same thing. It's called Mucomyst, and it clears out the mucous and gunk out of the lungs. There is a generic of that one (the pulmozyme doesn't have a generic) and it's called acetylcysteine. What's really interesting, is that he said that it is actually used for an overdose of Tylenol. I'm pretty sure that's what he said. Isn't that weird??? He also said that since it's so rarely prescribed, doctors don't usually think about it first as a pulmonary drug. Well, I called the doctor, and told his nurse about it, and she said she would tell him, but it may not be an option, because the pulmonologist specifically said pulmozyme.

These are too big of words, my fingers and my brain aren't working together very well. :)

So, she called me back like 5 minutes later and she said that she told him, and that he said that would be an option if we could not get samples and what-not. She just called, about 10 minutes ago. She said that they were unable to obtain enough samples, but she did go ahead and fax over the prescription that Pat had recommended. She had good news and bad.

Bad: They do not have in stock.
Insurance does not cover it.

Good: They can have it tomorrow by 1:00.
Without insurance it's $30.

I can't believe that. Way to go Paul! I am so happy, I could do a dance right here. Good thinking calling him first. I'm so excited. For the first time in a long time, I feel like "the system" is being manipulated by us instead of "them." I feel like such an advocate. :) Isn't that insane???

Awww, my sweetie's fighting the system. :) That's funny.

Caden's feeling okay. He is taking the treatments a lot better. I think it just scared him at first. He's getting used to it and he was actually laughing at the other kids today when I went to give it to him. He's such a sweetie... and a trooper too! His coughing is a little bit better just by using the xopenex. It will apparently be fine for him to wait till tomorrow to start the other medication. I am really not too worried about it, because he seems to be breathing a lot better now. I am so proud of little man. Forget the walking, this is great!!! Maybe this is what I needed to snap out of the "walking fixation." Who cares if he walks or not. I'm proud of him either way.

Thank you all. I think we are going to make a decision tonight on whether or not we are going to San Fran. We'll let you know!

This is almost funny... almost.

So Caden and I went to the pediatrician this morning. His gunky eyes (started yesterday) are a result of congestion, and it's nothing to worry about. They took labs of CBC and CMS (or something like that) which he didn't like at all. They should have the results of those later today. We are going to have to give him chest PT during the treatments to help him break it up and cough it up. We go back the 4th to see what his xrays look like.

So, I went to Walgreens to pick out the pulmozyme and while in the drive-thru, the technician buzzed over the radio, saying that she wanted to clear something with me real quick. She informed me that the drug was covered by our insurance, but our portion of the cost was $1,600 something. It really doesn't matter about the other 50 bucks or whatever the total actually is. How do they expect people to pay for this stuff??? Even if you could afford that, that's just ridiculous. I can't help but laugh.

It's not like we've shelled out three grand this year or anything. :) I told Paul if this keeps up, there is no way that we couldn't go on Medicaid. We are technically a family of four now, so the income would change. I don't know. What do you guys think? The way Paul's mom put it, is that between all of his grandparents and step-grandparents (he has 13 if you count greats) they have paid in tons of money throughout their lives, and she, at least, is happy for it to go towards Caden. I see her point. I am seriously considering that. I would probably go crazy staying at home, but we have to really weigh our options. It would be worth it in the long run for Caden's development and health as well. Keeping him away from germs at daycare. We will have to seriously discuss this option.

The doctor is on the phone right now with pharmaceutical companies seeing what we can do, and if we can get some samples or something. That was only for a 14 day supply! I can't imagine. Hopefully they will come up with something else.

I am going to go over to daycare on my lunch breaks and give him his treatments. Hopefully these treatments work. My mom was saying that if we have to pay that, that we might be better off in the hospital. I don't know about that, but hey, whatever. We'll see how things go.

I'll let you know what the doctor says about the pulmozyme.

Thanks!

Okay...

So my mom went with me and Caden to the cardiologist. I was freaking out all day, and I was really worried... understandably. Well, I'll start off with the good news. His heart is fine. I looks pretty much like it did in December, the last time we went to see her. She doesn't want to see him for the heart for another 6 months. Which, by the way, is amazing. I was so worried for the last month, and that just makes me feel so much better. You know, she says that he can go 6 months, but the real question is: Can I? I worry so much. It's a mom thing, right?

Well, when he was in the hospital, his right upper lobe in his lung collapsed. They say that's common in babies that are intubated for a long time. Well, the right upper lobe looks okay now, but the middle lobe is collapsed now. And it's significant. It sounds (and looks) like it's the whole middle lobe. So, we are going to the pediatrician tomorrow morning to get a prescription for pulmozyme, which I think is a commonly prescribed medicine for cystic fibrosis to help clear thick mucous. We are continuing with the nubulizer treatments. The medicine we are using for that is xopenex. It's pretty easy to use, except for the fact that he fights you about it. He hates it, and it's not like it hurts him or anything.

We are going to the doctor in the morning for that medicine and information, and then we are going back in two weeks to get another xray. If things look better, then we will either continue or stop the treatment. If things look the same, we will be admitted and they will want to do a bronch to manually remove the mucous. Eeeeeek!!! That's sounds painful. Of course, he would be put to sleep, but still. We would request to go to KC for that if it came down to it, because I really don't care much for the pediatric pulmonologist here. She is the only one in Kansas, if you can believe that. Well, that's what they told me, anyway. Maybe there is another one... hopefully. Also, considering his other complications, I would want him there if something happened instead of the crappy Wichita hospital.

Well, assuming all things go according to plan (crossing my fingers) he should be better in a couple of weeks. She did say that if he seems really tired or like he is not getting any better, or if he gets any worse, we need to take him to the hospital.

It feels like we can never get out of the woods. I really appreciate all of you reading, thinking and praying for Caden/us.

Thank you, and we will keep you posted.

Ashlea

P.S. I forgot to say that she did up all of his doses of medications, except the aspirin regimen he's on. He has gained a little weight since his last appointment, so she went up. He weighed 20 lbs, 4 oz. Considering he is 18 months old, and he weight 9 lbs, 12 oz at birth, that's not a lot. Oh boogie...

Caden's sick

So, right now Paul is at the doctor with Caden and he just texted to say that his sats are 93. I know that's not bad, but he has been doing this coughing thing for about a month now. It's only at night, mostly, but sometiems he just coughs and coughs. It really worries me. He was doing it for about a week. It was getting a little bit worse as time went on. He spent the night over at his Grandma and Grandpa's house last Sunday night, the 11th, and she was saying that she was really worried about the coughing. It seems like it has gotten worse and worse from then on out. That Monday night, I put the humidifier in the room with him, and he didn't cough once. I thought we had fixed it. Well, that was great until... Saturday night. He coughed a little bit, right around 5:30 am, and woke up early. Of course, he's been sleeping a lot more than usual because he's not sleeping well at night. Or it could be something more.

Update:

Paul called me to say that he may be going into congestive heart failure, and so (obviously) I left work. Our pediatrician wants Caden to go to the cardiologist (if not the hospital), because the xrays are not looking very good. His heart is enlarged, which it usually is on xrays, and he has a substantial dark area on his left lung. It could be several things, but the radiologist pretty much ruled out pneumonia. The doctor sent us home with a nebulizer and the treatment drops and we waited for the cardiologist to call. She called around 3:30 and we made an appointment for tomorrow at 4:15. She is going to look at those xrays and perform an echo (which he HATES) and she will make the decision on whether or not to admit him. Her office is actually in the hospital building, so that's good at least. The doctors so far are thinking that maybe he has asthma, which is why they gave us the nebulizer. If that is the case, we should be seeing improvements within 2-3 days. I am hoping that that is all. Paul and his brother both had pretty bad asthma as children, that they eventually grew out of. When he got his first treatment, he screamed, so I know that this is not going to be fun.

We had a trip planned to San Francisco this weekend, and I am not sure if that is going to happen or not. I really don't want to leave him at all if he is feeling this way. There is no question if he goes into the hospital that we will not go. That stinks too. Paul and I never went on a honeymoon and have never been on a real trip together. We got married 10 days before his first surgery, so that knocked that out of the water.

I will keep you all updated throughout the next couple of days.

Walking

So, the therapist was supposed to stop coming. She is still coming. Caden's not doing very good walking. It's been over two months since he took his first steps alone, and it seems that he is getting even more scared to do it without help. If you try to stand him up, he just curls his legs up, and will not stand up. She told us to take him outside and let him play in the dirt and grass. We do, and he likes it, except when he stands up, and he can feel the prickles in the grass. (He actually says "Ow") She told us to do it barefoot to help his muscles in his ankles, with the ground being uneven. (We have a somewhat hilly, sloped yard.) Well, we are supposed to walk him around the house once or twice a day. If you have ever been to our house, you know that that is a long way, especially for Caden. He has fun with it if he sees a bunny, or something. We have been doing it with his shoes on, and that seems to help. Our grass is a whole other story, so I can kind of see why he wouldn't want to do it barefoot. I just feel like he was doing so great for the past year, learning to do so many things, and now he's just at a stand still. He's not talking a whole lot, it's like he forgets how to say things. Maybe he thinks that he doesn't have to say anything, because he knows that if he points to it, we'll get it. We are really bad about that. He's getting really good at throwing temper tantrums. But the funny (not so funny, really) thing is, that if we are out in public, he's great. If we are shopping at walmart or the grocery store, he's so quiet and well behaved. I would rather him be behaved out in public, don't get me wrong, but why does he change so rapidly when we get home? Because he can, and he knows it. He's always been really good at the store. I think he likes the commotion. I feel like he learns more from daycare than he does from us. Which, he is around older kids all day long, and Carol is really good about singing songs and playing with them. He knows where his head and his eyes are. He knows that if you blow on something, that it's hot... and he'll say it. He knows what a doggy is, and a kitty. He loves Carol's kitties. We were watching Paul's parent's dogs while they were out of town last week, and if they got to rough-housing, Caden would point at them, and get a mean face and say "Dat" or something like that. I think he was telling them to go outside, cause we did that if they were playing to hard around Caden. It's pretty cute. Paul and I were joking (kind of) that the kids will learn to walk together. That this baby will be holding Caden's hand instead of the other way around. I'm just not very optimistic, I guess. I just wish he'd do it already. He's been making such great leaps and bounds since this time last year. He's just stuck. Like he plateaued or something. I am grateful for how great he is doing, I guess I just got used to him doing soooo great. He's just taking his sweet time. I'll get over it.

Have a great day!!!

I might as well...

Paul and I found out this weekend that Caden will be getting a little brother or sister. We have been trying for about 5 months, so we are excited to make the announcement! I have told everyone, just about, so why not let everyone know. I know it's "bad luck" or whatever, but I don't believe that anyway.

Caden has no idea what this means, of course, but he'll get used to it. Hopefully. :) I'll post updates and pitures (as soon as I start to show) on my blog instead of Caden's.

Please offer your prayers and support.

Little Ava Rae Boeckman passed away yesterday afternoon. Please visit her page at: www.kadenboeckman.blogspot.com

Pictures

I'm not sure if you all can check his Myspace pictures without being signed in to Myspace or not. Anyway, I put some new pictures on it. They are of the month of April and his party last weekend. I hope you are able to see them and that you enjoy! He has been eating non stop for 5 days now. Wow... I'm being serious. He is constantly eating. But that's a good thing, so I won't complain. :)

Yay!!!

Grandpa and Grandma Schumaker are coming to see Caden today!!! So is Uncle Forrest. We are very excited to see them. The last time that my dad and step-mom saw him, I think it was at his birthday... in November! He has started doing so much just since then! They live in Denver, and they don't get to come out as much as they would like. We haven't gotten out there since I was about 11 weeks pregnant. So, that's on our list of things to do too. It's just kind of going to be a hassle driving 8 hours for Caden. Well, we thought about doing it over night, but then we'll be pooped all day the first day or two. We'll figure it out.

His party is this Saturday... which I am going to address in my blog I am about to write. :)

He's not sick anymore. He's still coughing (sometimes violently) but he's doing great other than that. I can't believe it's May already!!! It's Carol's (the daycare lady) birthday, so they all get cupcakes today. Caden always loves cupcakes, and he gets it ALL over himself. He's so funny. He's so smart too. He was playing with this giraffe thing that the neck moves if you make it, and he stopped and looked at it like it was crazy. He stared at it for a minute, and then he started "talking" to it. He sounds like: Scoo scoo scoo scoo, with a little lisp kind of. It's really cute.

Caden's going to have a good day tomorrow, cause Poppy and Nonny are watching him all day. I'm sure they are bringing him all sorts of neat stuff to play with, and he can show off his new stuff that he can do.

Have a great day!

Therapy

I spoke too soon. Caden's kinda sick. Ok, he's sick. He's got this cough (that he gave to me) and if he feels like what I have felt like, I understand why he's been crabby. Poor guy... can't he get a rest?!?! I thought that with the warmer weather, he would start having longer periods of "health."

I have mentioned before that we have an awesome therapist, Sarah, who come to the house to see Caden. Well, she comes every other week, and she always has new things to try and teach us. I really do feel fortunate to have her coming to the house, and I was thinking this morning that if she wouldn't have come, I don't know how far Caden would have gotten by now.

When she first started coming, (May 14th, 2007) our goals for Caden were to hold his head up, eat by mouth, and roll over. He couldn't do ANY of that. Now look at him! It hasn't even been a year. I think that(in terms of developement) we should consider that a starting point instead of his actual birthday. Everyone always says how "behind" he is and all that, but if you remember that he essentially started all this less than a year ago, that would mean that he's quite advanced, huh?

Before I started my new job, I was always the one there when Sarah came. Now Paul's there. We talked a lot before about if she really needed to continue coming. I think Paul "gets" it now. That she is benefitting him a lot.

Anyway, she was saying yesterday when she came out, that Caden needs to be more independent. I guess I never thought about it, but we baby him. She said that we need to be working on not getting him everything he needs, and letting him go get his drink when he needs one, or letting him go get his binky if he needs it. I guess I just did it without thinking. He points to stuff that he wants, if that gives you an idea of what I'm talking about.

She mentioned that he will be two before we know it and he needs to be more independent. I got a glimpse into what an outsider would see. I'm terrified to think that Caden's a "baby" or a "sissy" I guess you would say. Not that I don't want him to be a momma's boy or anything. :)

I always thought that I would be the stern parent and teach the kids responsibility at an early age and all. Now I feel like I'm not. I don't want to be a hard-ass or anything, but I don't want to be a push over either. He does know that he can make us do whatever he wants... hold him constantly, push him in the wagon for hours (seriously) hand him the toys that he wants, let him play with my remote even though he has his own (which he does, that Paul got from work for him). I don't know.

Then it's like, he doesn't feel good, so I don't want to neglect him if he wants me to hold him all day. I know how nice it was when I was little and didn't feel good when my mom laid with me. I just don't know where to draw the line.

Any suggestions would be wonderful!

Party

So, we decided to change the day of the party. My dad and step mom are coming into town and they are leaving that Sunday morning, so we thought it would be nice to include them. We changed the date to that Saturday, May 3rd. I'm excited about it. I feel like people think I'm wierd though, for having a party like that. Like they're thinking "you're actually going to have a party? I thought you were just joking." I don't know. Screw 'em.

May 3rd
1:00
Our house
Lunch provided
No gifts necessary

Ashlea

It's been a year!!!

I think that today is a great day. Things were starting to turn around! Caden came off of ECMO a year ago. It's almost like his birthday in a weird way. It's as if he was reborn that day. He's been in a great mood the last few weeks, and he hasn't been sick at all! Yay Caden! He's such a good boy. I'm going to try and figure out how to get a video off of my phone and onto here. Don't get too excited... I may not figure it out.


If you don't see a video within a couple of hours, you should post a comment with some technical support. :)

Laughing...

I have done this like 10 times in the past couple of weeks. Put something in an email, or a blog, and forgotten to tell you what I'm talking about! LOL... At least I can laugh at myself, right? The foundation that I was raving about is

www.patientaccessnetwork.org

Why didn't you guys tell me that I forgot to tell you that part?!?!? I guess I was trying to keep it all to myself. Haha. Na na na na boo boo. :)

A wonderful foundation!

Well, I'll start by saying that we met our deductible for last year. By a lot. :)

Most if not all of you know about RSV, and how dangerous it can be to little ones, especially ones with medical miracles. Synagis is the shot that the kiddos get once per month to help ward off the virus. Caden started getting it in November... I think. We didn't get any bills for it, so I never thought about it.

Well, for the first one in 2008, they called me. They informed me that since the new year began, we would have to pay for the shots out of pocket until we met our out of pocket maximum. No big deal right? Well... he informed me that there are two separate shots, and that for every month, the price for both of the shots was $2,369.33. Of course, all we had to pay was 20%, which ends up being $473.87... That's right. Every thirty days.

Holy cow! First we had to meet our deductible ($300) and then we would have to pay the amount in full(the 20%)before they would send the next month's shots. What a scam. As my mother-in-law put it "Either way, they've got you by the balls." And yes, she was right. If anything happened to him as a result of not getting the shots, then how horrible would I feel for the rest of my life??? Ugh.

Anyway, we have obviously paid for them, and as a result, we have met our out of pocket maximum for this year now, too.

As I was researching synagis a few weeks ago, I found a foundation that helps pay for the coinsurance for many diffrent medications and such. I submitted our information, and we received our approval letter the other day. They are going to cover our expenses that our insurance does not, up to the full $1,500 that we have paid. Awesome!!!

I thought that with all of the people that use Blogger, some would find this useful. Pass it on, and if you know someone who is looking for a foundation to make a donation to, this is another great opportunity. Even if you don't need it, you should check out all of the different things they cover. Different conditions such as: Anemia, Cystic Fibrosis, MS, and Rheumatoid Arthritis, and everything in between. It's awesome, and I can't help but share it with you!

If you apply for assistance, good luck!

Ashlea

My Party!!!

I (Ashlea) am in the process of planning Caden's coming home party. He came home from the hospital on May 7th. Almsot a year now, unbelieveable! This year, that lands on a Wednesday. Not such a great day for a party. We are planning on doing it the Sunday before, which would be the 4th (not sure what time yet). We are going to eat cake, and I'm thinking about making heart-shaped cookies. Anyone that knows my "skill" in the baking department will probably steer clear of the cookies. :) Maybe I'll just get a tube of dough. You can't screw up Pillsbury... right???

If you think of any cute games to play or anything else, please let me know. He's going to be 17 months by that time, so he probably doesn't care what we do. It's not neccessary to bring gifts, we are just going to celebrate his health.

Thanks guys!

Ashlea

P.S. I can/will send a formal invitation to anyone that wants one.

Caden Walked!

Last weekend, Caden took his first steps. It was great to see. He isn't flat out walking or anything, but he's doing it! Sometimes he just has to be in the right mood, but it's a step in the right direction... lol. I'm a dork.

Caden's Feet

I am so thankful that Caden is alive. He came so close, and I have just recently let myself accept that fact. The hospital seems like such a nightmare. I almost can't remember it... or at least emotionally remember it, if that makes sense. I remember every date that everything happened, and I remember the morning that we drove to the hospital when they were giving him CPR for an hour and it was hailing and raining cats and dogs. We were driving 40 mph and it should have only been a 20 minute drive, but it was 45 minutes. I think about that morning a lot. Paul and I both were so quiet. The only things we talked about were calling the family and telling them to get to the hospital. Who did we call already and were they coming? That was the scariest and the most peaceful drive at the same time. I wasn't scared for Caden, I was scared for me. I was thinking about how I would get through losing him. I knew that he would be fine whatever happened. Isn't it funny that it took us 45 minutes to get there and that's how long they were doing CPR? If we would have gotten there in 20 minutes, we would have been waiting around feeling even more helpless than ever.

When I think back on the hospital, I think about how he looked to me. He, for the most part looked beautiful to me. At the time, I focused on how good things were going to turn out. Every new day was an opportunity for things to get better. He always looked so beautiful. He's my baby... I created him (with Paul's help). I made sure that he was warm enough, just like when I was pregnant. I rubbed his head, and put lotion on him. I sang to him and read him books, even though he was put under. I read my own books, and a lot of them. The moments that I got to hold him were few and far between, and so precious. He lost his voice and he would be screaming without making a sound. That was scary to me. He looked so scared and helpless with that breathing tube down his throat.

When he was on life support my unlce and aunt came up. It was the morning that my dad and Pam and Forrest came. It must have been April 5th... give or take a day, and I remember my uncle saying that they were coming from Denver to see him again. He shouldn't have said that to me. He said "Just in case, they want to see him again." What the hell was that supposed to mean??? It's funny the things that we choose to remember. Why that? Why then? I think about that a lot though. How everyone was just waiting for it to happen.

He looked like a blow fish all puffed up. His eyelids were starting to crack because they were so puffy. He still has really dry skin from being so bloated and tight. It looked like you could just pop him like a balloon. I felt bad for my Grandma, seeing him like that. She took it in stride though, and I was proud of her for that. There were so many tubes everywhere. After he came off of life support, about a week later, he was so skinny. His head looked huge because he was so thin. His eyes sunken in. He was still beautiful.

He was paralyzed and sedated for two weeks. I remember standing at his crib for what seemed like forever, just waiting to see his finger twitch, or his toe move. I would get so excited. I was so proud of him for a little muscle spasm. The first time I saw him open his eyes, you could have popped me like a balloon, I was so proud. I felt so full of hope and love for that little man. I hated feeling his bones through his skin. His spine just poked out. But he needed lotion, so I did it anyway. His skin on his legs just hung there. He looked like Frankenbaby with his staples and stitches. But he was still beautiful.

I made sure that his IVs weren't pulling on his skin, and that there weren't any bubbles in the lines. He has so many scars from just the IVs being in for so long. I kiss them now. Somehow, I might make it better. I would put baby oil on his head, because his scalp was so dry. The nurse thought he was sweating, but I was just being a good mommy. That binky looked so huge against his face. His big eyes just looking at me, telling me that he hated it there. Maybe that's why I felt at peace when we were driving to the hospital. I knew that everything would be okay, no matter what.

That morning, when they let us back to see him, he was completely out. There was blood everywhere. It had dried and crusted in his ear. I couldn't clean it out very good because he wasn't supposed to move his head at all. He got so used to self soothing. When we came home from the hospital and still a litle bit now, he didn't want you to hold him. That's all I wanted to do. I just wanted to touch him and feel his heart beat. That tiny heart that almost stopped. That did stop. That started again. That beautiful, tiny heart. He is so beautiful.

He had this cart full of stuffed animals and books and toys. Some of the nurses thought that it was the hospital cart. You know, the one with toys for all of the kids. Those were Caden's. I don't let him play with those now. Somehow, it's like all those toys and animals and books were tangible prayers that people had given him. His crib was stuffed with so many animals, the nurse made us move them because she couldn't see him. I wanted him to have his friends around. The frogs that my dad and Pam gave him were there because they couldn't be. The lamb and Mickey Mouse and the dog that was Paul's as a boy. The bunny and the walrus... that ugly ugly walrus. Caden liked it because it was the brightest.

The morning that he had his first surgery, one of Caden's grandmas held him for a long time before they took him. I didn't have the nerve to take my own son. I wanted to look at his chest one last time before it was scarred. To touch it, and remember that it wasn't scarred at one point. He was so happy. He looked like any other three month old, except for the tiny hospital gown they made him wear. There shouldn't be hospital gowns that small. It was too big for him though. That ugly green gown. I tried to keep him warm, because it was so cold in there. At least he had his diaper on. I wonder if he had his diaper on during surgery.

When he was on life support, Paul and I asked everyone how long they were going to stay. Someone said "As long as it takes" and everyone else agreed. Three days later, everyone was gone. Except for me and Paul. I sometimes think about whether everyone thought that that was as long as it took. Or if they couldn't take it anymore. It took so much longer.

I like to think about when he was born. When we thought he was perfect. (He is, mind you!) My mom put the mirror up, and I saw how close I was. It only took me a couple of pushes after that. His little head popped out and I saw him in the mirror. All I could say was "He's so cute! He's so cute! He's so cute!" I had no idea... he is so beautiful. That little man has taught me so much already. I guess I was naiive thinking that it would be the other way around. I look at his feet a lot, and kiss them and tickle them, and I help him stand on them. Sometimes, when I look at them, I think about how much I miss them kicking my ribs. I thought he was going to break out, like he was in prison. Sometimes I wish that I were pregnant again. That I didn't know that he wasn't healthy. That I was sustaining his life on earth. I guess that's the scariest part about being in the hospital, in our situation. I wasn't sustaining his life anymore. He had to do it on his own.

I guess I realize now that I didn't blame myself for his heart defect, I just wished that I could give him back his umbilical cord. I wished that I could have given him a back-up generator. Turn on the reserves. That he would have had a constant spotter, so that if he dropped the ball, I would catch it. But he didn't drop the ball. I guess that's a mom thing. His beautiful little feet. Those little feet were the only part of his body that nothing was hooked up to. Maybe that's why I love looking at them so much. They look just the way they did before. No one has scarred that part of him.

I don't want anyone to feel hurt or upset by the things hat I have said, I just want you to know how things were. This is good for me... to talk about it. People hear that he had two open heart surgeries and all that, and they just go yeah, ok. But they don't get it. It's more than that. He truly is a miracle baby. A two million dollar miracle baby! I don't want to remember, but that's the best way that I can deal with things now. We still go to the doctors and stuff, but when I remember how close he came, it makes me love him that much more. I realize how great it is to have him here. Thanks guys for reading, and thank you for everything that you did for us when we were there. Paul and I are doing great too. This is the family I dreamt of as a girl. Just not the way that I thought it would happen, that's all. But things happen for a reason, and it's okay that it happened to us.

I love you guys... Ash