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!!!