There she goes, talking about her kids again...

A few unrelated updates about my kiddos...

Since we have to essentially "make" Cohen gain two pounds by the end of next month, I have been weighing him at the beginning of each week to keep tabs on it. From last Sunday to today, he has put on half of a pound. If he keeps that up, we should get to the two pounds (and maybe more) with no problem. We've been pumping this kid full of Pediasure to supplement his already decent appetite for food.

Speaking of good appetites, Kyden is pretty much over baby food completely. He still eats a little here and there, but he is preferring table food (who wouldn't, right?). This has made meals for him a little more challenging since he is limited to the kinds of food he can eat at this point. He's been eating a lot of steamed peas and carrots lately along with bananas, all of which he loves. Today, I gave him tiny bits of chicken at lunch (he ate every bite), steamed peas and carrots (inhaled), and steamed apples with cinnamon (inhaled even faster). Tonight, I am going to let him try some of the creamy potato soup (think very creamy mashed potatoes, but it also has pureed squash and cauliflower in it). Along with the nursing, it would seem he is getting adequate nutrition, but his nine-month check-up on Friday showed him to be on the smaller side for his weight (about 25th percentile) but otherwise healthy. The doctor is not concerned, citing that it is probably genetics (which I can't argue with, since Matt was a very small baby and child, and all my babies have been small so far). I'm sure if Kyden was formula-fed and drank juice instead of water in his sippy cup, he probably would be a little bigger given all those extra calories. Anyway, I'm sure he will catch up as he eats more table foods and once he switches from breast milk to whole milk after his first birthday, but the irony is that I thought he would be the only one of my three children with whom I wouldn't have to worry about calories and growth, and here I am somewhat worrying about it, even though the doctor assured me I shouldn't.

The doctor also diagnosed Kyden with eczema, which confirmed my suspicions about the skin issues he has been having. Fortunately, I have been doing almost everything the doctor suggested to keep the symptoms to a minimum (special lotion, hypoallergenic products, and applying Aquaphor on when it flares up), but she also said to keep his baths spread out to about every three days. I have been bathing him about every other day, mostly just out of routine, but it's an easy adjustment to make.

All this talk of food is making me hungry, so onto another topic. Cohen has his first soccer practice this evening, and since soccer is pretty much all he has talked about the last month, he is completely stoked that he finally gets to go tonight. I'm looking forward to seeing how he does as far as learning how to be part of a team, following directions, taking turns, and so on. It will also be good for him to have the social interaction with other kids his age and not just with his sister and baby brother. Mostly, I just want him to have fun and be a kid.

Since I have talked about my boys, I must talk about my daughter so she won't feel left out, right? She is doing very well with her school work and is reading everything. (Gone are the days when Matt and I could spell stuff to each other if we didn't want the kids to know what we were talking about.) I must say, I think she's a born reader. Not only is she good at it, but she enjoys it, too. Phonics, schmonics. She pretty much blows it out of the water. I'm very proud of my Emmylou. She is sort of a fidget when it comes to sitting still, but she does remarkably well with her lessons, so I know she's still paying attention.

Speaking of school, time to end this blog and get some lessons going.

When CF Makes Me Angry...Really, Really Angry...

Before I get to the major matter, here are some pictures from Thursday's CF Clinic visit:

Emberlynn doing PFTs (which measures lung function)

Cohen in his mask (to not spread funk or have funk spread to him)

Emberlynn in the funk-protecting mask

I believe the most defeating thing about CF, and about many diseases and illnesses, for that matter, is that you can do all you possibly can so that it does as little harm as possible, but it's still not enough.

Over the last year or so, we have struggled with Cohen gaining enough weight. And it's not so much that he hasn't gained weight--he has--but along with that, he has grown taller, and his weight isn't catching up to his height, i.e., his BMI keeps dropping too low on the chart. I'll be the first to admit he's a skinny kid, but he by no means looks undernourished. He's an active four-year-old, which is normal and healthy, but with that comes the natural burning of calories, calories he so desperately needs. (On a side note, in my dream world, it would be awesome for me to consume those calories and transfer them to my children considering they need them and I, obviously, do not...but that's another issue all together...). And the thing is, the kid eats. He eats so much that it probably costs more to feed him than Matt or myself. So the issue isn't that he isn't eating enough. But what he is eating isn't necessarily the highest in calories, and there is only so much I can do to make things more fattening. For instance, he loves bananas, which would be thrilling if he was an average kid with average nutrional needs. For him, though, it would be great if he'd eat some peanut butter on that banana, or cream cheese-based fruit dip, or something that would add some good fat to it. But he just wants the banana. He won't touch peanut butter in any shape or form. He's not a fan of ice cream (yeah, I know, weird child), so milkshakes are out of the question. People think it would be easy to get calories in the kids because what kid wouldn't want to eat ice cream or cake or all these great high-calorie foods? My kids.

Anyway, I could go on all day about the struggles with food around here. We know how it ended with Emberlynn (getting a g-tube when she was 18 months old). And now it seems we are headed down the same route with Cohen. I'll spare you all the fine details from my conversation with the head pulmonary doctor, including how I broke down in tears in front of her, but in a nutshell, we have two months to get Cohen to gain two pounds (assuming he doesn't grow any more in height), or we will need to make the decision about the g-tube. Now the doctors can't force us to do anything, of course, but they are highly encouraging it, so much so that I had two doctors in the room with me discussing it. Given the fact that I've never had two doctors come in the room to discuss anything (not counting students--Vandy is a teaching hospital, after all), I know they are getting serious about it. Dr. B, who I highly respect and talks to me like a person, not an ignorant parent, is worried that his slow weight gain will start to affect his lungs (weight gain is directly affected to lung function) and that it would be better to go ahead and do it rather than keep prolonging it and do any damage.

I understand this, of course, and would never want to hurt my child deliberately. The thing is that it's not just a matter of my son getting a g-tube to help with extra calories. It's that he has to have surgery; be in a hospital for days; adjust to tube feedings, which he may or may not tolerate well (think vomiting, diarrhea and/or constipation, etc.); be attached to a pole every night; relearn how to sleep (it's hard to sleep on your stomach when attached) and not roll around so that the tubing doesn't wrap around him or around his neck, which is something that happened a lot with Emberlynn in the beginning; most likely revert back to wearing pull-ups at night because of all the fluid being taken that will inevitably have to come out. More importantly and most concerning is that he will have to adjust to having something sticking out of his stomach, which will probably be very upsetting to him, at least initially. He also will most likely not eat much during the day because he is essentially eating at night. And even though the tube is supposed to give me and Matt peace of mind because we know we can be more in control of the calories he takes in, it is an added stress. It's another worry. Another thing I'll have to fight insurance companies about. Another "chore" to add to the crap my kids have to do everyday just to survive. Another thing to make my child's life more about CF and less about being a kid.

As much as I don't want CF to define my kids, it's hard when it's so consuming. Living with CF will never be easy, not as long as a cure is not discovered, and it only gets harder as time goes on. And as Emberlynn and Cohen get older, it will be harder for them emotionally, and they will start to ask those questions that will break my heart even more, like why they have CF and why they have to do therapies and treaments and others don't. Staying positive is hard when there's so much negativity around. And it's so easy for others to tell me to think positively when they're not the ones in these shoes. Trust me, I pray, mostly for peace, but also for my kids to be able to live a long life, with or without CF. I want to tell them that, no, they won't die from this, and not be telling a lie. I know that no one is guaranteed a tomorrow, but it's hard not to think about mortality when it constantly is in your face. As a Christian, I know it's the devil speaking, and I must tell him to get behind me, that Jesus is for me. But even Jesus suffered, and he cried out to his Father, and this is me, crying out for my children.