April Clinic and the Kiddos

First, I want to say how much I appreciate everyone's prayers and concerns for Cohen (and for all three kids, for that matter) as we approached his and Emberlynn's recent clinic visit, which was last Thursday.  Matt requested the day off when I made the appointment so that if the decision on the feeding tube surgery needed to be made, he would already be there with me.  My sister Shauna graciously watched Kyden for us (a big thanks to her!) since he is now walking and would have had to be cooped up in a small exam room for two and a half hours, not to mention it gave Matt and me a chance to be able to focus just on Emberlynn and Cohen and talk to the nurses and doctors with minimal interruption. 

In short, the biggest issue for Emberlynn and Cohen is and always has been their weights, or more specifically, their BMIs.  They are supposed to be at or above the 50th percentile for BMI; poor weight gain and maitenance can be detrimental to their health because it affects lung function.  For Emberlynn, the feeding tube helps tremendously by giving her extra calories via overnight feeds.  We are not strangers to this, given that Emberlynn has had her g-tube for nearly five years now.

Cohen, as he has grown taller and gotten more active, has had trouble maintaining an "acceptable" BMI.  He is not unhealthy or undernourished, and I have seen far skinnier kids, but those kids don't have CF, so it's not so much a concern for them.  We have spent the last couple of months trying our best to "fluff" Cohen up (a term my friend Emily uses, which I kinda love) with extra calories in his meals and snacks plus supplementing with Pediasure and Boost Kids.  I have weighed him every week, sometimes several times a week, especially during the last couple of weeks leading up to this last visit.  He had put on two pounds, which was our goal, and then a week before the appointment, he got a virus (which Emberlynn and Kyden also picked up shortly thereafter).  Go figure that the virus lasted a week and completely wiped out his appetite.  He barely ate or drank, which caused him to drop over a pound.  Once weighed at the clinic, it showed he had gained about a pound since his previous visit, which was not stellar but a step in the right direction, at least.  It bumped him from the 33rd to the 41st percentile, which isn't too shabby, in my opinion.  If he hadn't gotten sick, he would have been back above the 50th percentile.  (The doctor actually asked me if Cohen could be faking sick since Emberlynn was also sick, but I told him Cohen was the one who was sick first, and no, he wasn't faking it.  And as  his parents, I think we would know.  Sheesh.)  Most importantly, we were able to "shelve" the feeding tube conversation for now. 

As for Emberlynn, she lost a little bit of weight, but she also had the same virus as Cohen, causing her to have no appetite whatsoever (her appetite is not that great to begin with).  We couldn't even use the feeding tube to help make up for everything because it was making her throw up.  So now that she is over the funk, we are playing "catch-up" by putting her on her feeding tube six nights a week as opposed to five nights (per her dietician's instructions), which is what we have been doing for some time now.

Emberlynn and Cohen will have another clinic visit in two months instead of the normal three months to make sure their weight gain is good.  As long as we can avoid another hiccup (like a week-long virus), I am optimistic they will receive good reports.

And now we come to Ky-Ky, who is growing up way too fast (you'd think I'd be used to that, right?).  Yesterday, as I was browsing the dollar store, I found monkey-themed birthday party stuff, so I bought it for him seeing as his birthday is one month away.  One month away!  I mean, seriously, wasn't he just in my belly?  Now he is walking(and running) and talking (he says "Dad", "Daddy", and "Hi")  and eating whole bananas (since he refuses to eat it if I cut it into small pieces), among other "big boy" things.  (But I sure would love if he learned this "big boy" thing called sleeping through the night.  That would  be awesome.)  He is also still nursing, which is fine for now,  but once he turns a year old, I'm afraid he won't be too keen on stopping.  He loves the boobies, what can I say?  But I suppose we will cross that bridge when we come to it, as they say.

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.

Growin' Cohen

After a long day with plenty of ups and downs, I'm happy to end it with a positive blog. Cohen is finally back up in the "green zone" based on his BMI; he is now in the 50th percentile after having dropped pretty far below for nearly a year. The doctors were recommending a g-tube if we couldn't get his weight up soon, and they were really going to push it if this visit didn't show much improvement.

When he quit drinking Pediasure shortly after his third birthday, he lost close to a thousand calories a day (he was drinking 3 to 4 day, which equates to between 700 and 1000 a day). That's pretty substantial for a small child. Granted, he was eating food very well, but nothing that contained enough calories to make up for what the Pediasure was providing.

So over the last few months, we have been slowly getting him to drink more and more Pediasure, which has obviously been helping. I have been weighing him every week to monitor his growth. He put on two pounds alone over the last five weeks, so I knew going into clinic visit today that he would show a big difference from last time but didn't know if it would be enough to bump him to the 50th percentile or above.

Now we just have to maintain his weight and keep him at a steady increase. He is up to 1.5 containers of Pediasure a day, but our ultimate goal is 2 a day.

Both kids also had to get flu shots today. Not fun. Enough said.

Cohen had a routine chest x-ray following clinic. The x-ray allows the doctors to be able to see what's going on in his lungs better than just listening with a stethoscope.

Cohen also gave me a few good laughs today, which I wanted to share:

My sister Shauna was going to be coming along with us, so this morning when we arrived to pick her up and were waiting on her to come to the car, Cohen said quite theatrically, "Where is my lady?! Where is my lady Shauna?!" And when he saw her coming to the car, he announced, "There is my lady Shauna!" Too funny. I think he picked up "my lady" from Daddy, who has always called me his lady as a term of endearment.

Second, as we were waiting to be called back for Cohen's x-ray, he and Emberlynn met a new little friend in the waiting area. Cohen initiated a conversation with her, and his side went something like this: "How old are you?...I'm three....What's your name?...Oh, [little girl's name]? That's a great name...My name is Cohen....I have a brother...his name is Kyden...it's spelled K-Y-D-E-N..." A few minutes later, she had stopped playing with them and was looking sad about something, and Cohen ran over to me and said, "Mom! I think she is sad because I didn't hug her!"

And finally, for his chest x-ray, he was required to take his shirt off. So when it came time to put it back on, he told me, "It's ok, Mom. I'm fine without it." Needless to say, I explained why he had to put it back on, and he obliged. That's my silly boy!

The morning started out rocky (he wasn't the most cooperative boy at first when the nurse was trying to get his vitals and measurements), but it turned out ok. I have to remind myself that even though the kids know what to expect at every clinic visit and that it is something they have done countless times and will continue to do at least four times a year, they are still little and sometimes just don't feel like doing it. I can't blame them. I have those days, too, and I'm sure if I had to go through all the junk they go through at visits, I'd be a little crabby too.

"Tube" Be or Not "Tube" Be

A week ago today, the kids had a visit to Vandy for CF clinic. It's a time I generally dread, mostly because we are in for a long morning there (this time was three hours; our longest was around five). I try not to complain because they are a great group of health professionals who know and treat my kids well, but I'm sure most parents would agree that spending several hours at a doctor's office with nothing for the kids to do is not exactly ideal. This time, however, I brought the kids' portable DVD player and their lastest obsession, Disney's Tangled, to watch in the exam room since the majority of the visit is me speaking to the doctor/nurse/respiratory therapist/nutritionist/social worker/et cetera about how the kids are doing, their daily routines, their medications...the list goes on. Very little of it are the kids actually being "examined," so, needless to say, the DVD player was a lifesaver, and the kids were "tangled up" in Tangled. (Sorry, couldn't resist the pun.)

For the most part, their visit went well. Emberlynn had not gained much weight, but she has shot up in height over the last year, and her weight just hasn't quite caught up to that yet. Still, she is in about the 75th percentile for BMI, and as long as the kids are in the 50th or above, it's not a concern. Cohen, however, is only in the 31st; he was in the 22nd at his last visit, so there has been some improvement, but not much, even though he gained two pounds since his previous visit, which was the end of June. I thought gaining two pounds would have more of an impact, but my excitement was shot down when I learned it hadn't made much of a difference in his BMI.

If you have read previous posts, you will have read about Cohen's weight struggles (which have only been in the last eight months or so) and the suggestions we have received from the doctors and nutritionist to consider a g-tube. Emberlynn has a g-tube and has had one for four years now, so we are definitely not strangers to it, but we are worried about how Cohen will adjust to such a major change. Emberlynn was much younger and easy-going, so it was natural for her to be able to not notice a giant tube coming out of her stomach. Cohen, however, is almost four and would yank that tube out in a heartbeat, guaranteed, which is why Matt and I are reluctant to go through with the surgery. (We have been informed, however, that some surgeons there will place the button in immediately after surgery rather than the temporary hose-like contraption that Emberlynn had for the first several weeks. This will definitely help with our decision, should we decide to okay the surgery.)

The fact that Cohen has put on two pounds in two months, which is more than he has put on the entire year, gives me hope that he will catch up within a few months. He has been drinking his Pediasure, which I am sure is the primary source of his recent weight gain. Our goal is to get him up to two containers a day (currently, he drinks about one per day).

While all of Emberlynn's medications and dosages stayed the same, we are switching Cohen's antacid medication in hopes it will help the enzymes be more effective, which in turn helps him absorb more fats and nutrients from food, which therefore would lead to better weight gain. I also mentioned that Cohen has been sneezing a lot (every morning, he immediately starts sneezing when he wakes up and then sneezes throughout the day), so the doctor prescribed some Clarinex to help dry it up so that the drainage doesn't eventually become a problem in the lungs.

And while we are on the subject of the kids' growth, I will update you on Kyden as well. At his two-month check-up, he was in the 50th percentile for everything (height, weight, and head cirucumference), so he is right on track. He is currently outgrowing his 0-3 month clothes and size 1 diapers, something I am not used to at all (a fast-growing child) and is laughing (SUPER cute and heart-melting) and babbling a lot. He will lay in my lap and just talk and talk to me. He has also been trying to roll over. It's hard to believe that exactly just twelve weeks ago, he was a newborn baby taking his first breath.

We will be returning to Vandy on October 6 for a clinic visit for Cohen (mainly to check his weight) and for a routine chest x-ray. If his weight hasn't improved more, they will most likely push us a little more to do the g-tube surgery, but we feel that if he has made progress and continues to move up on the growth chart, then there is no need to do a g-tube just yet, if ever. Both kids return for a regular clinic visit on December 8, assuming they stay well (as in not coming down with any respiratory illness that would warrant a visit to Vandy). As fall and winter approach and flu season looms ahead, we always just pray for the best.

Today CF Stands for "Cute Fatties"

Fellow CF parents whose kids have struggled with weight gain can relate to my excitement when I share the news that my kids have gained a pretty substantial amount of weight since their last clinic visit in May. Cohen has gained over 2 pounds and is now 30.3 pounds; fortunately, he has not really struggled with his weight since he started taking enzymes at 7 weeks old, but weight gain is always exciting nonetheless when it comes to CF. Emberlynn, who struggled with weight gain even after diagnosis and enzyme treatment and ended up having a g-tube placed when she was 18 months old to help with her growth, made my jaw drop today; she has gained over 4 pounds and is a whopping 38.5 pounds! I knew those 4T shorts were getting tight in that waist, but I never would have guessed she'd gain that much! I was ecstatic. My sister, who went with us this time (who I am extremely grateful to, seeing as she had to take Cohen potty 4 times while I spoke with the medical team) and I called them the little fatties.

Isn't it ironic how in today's society, what with its obese kids and health crises, I am rejoicing for my kids' weight gain? Isn't it also ironic that this chubby mommy, who so desperately is trying to shed the pounds, is also desperate for her children to do just the opposite?

So, to get back to the clinic visit update, there were a few changes made to the kids' existing treatment routines. Emberlynn will actually get to decrease her tube feedings (yay for breaks, not just for Emmylou but for Mommy and Daddy, too!). Presently, she is on her feeding tube every night, but we get to knock it down to 5 nights a week. Can we say weekend trips with no tube junk to haul with us? Hallelujah for that! Her enzyme dosage is going to increase to keep up with her increase in weight, so we are bumping it from 3 caps to 4 at meals and before and after tube feeds.

I was also told that, per CF protocol, Emberlynn has to have a CT scan on her lungs soon. It will give the doctors a better look at her lungs and allow them to see how they are looking, in a nut shell. I was also forewarned that her lungs will look abnormal no matter what because of the CF and to be prepared for that. Coincidentally, I just read an article last week about CT scans and how the high radiation exposure from them can cause cancer later in life. I brought this concern to the doctor's attention, and we discussed it further. I agreed to schedule the scan, but only after telling her that I'd need to discuss it with Matt and also further research the risks. It's ultimately our call, of course, whether we want to risk it. It's a hard decision to make, and it will take a lot of weighing the pros vs. cons and risks vs. advantages. If we decide against it, we can cancel the appointment.

As for Cohen, he is going to be starting Pulmozyme, which is an inhaled medication with which we are quite familiar (Emberlynn has been on it since she was 22 months old). He will take it as a breathing treatment once a day. I'm a little worried that he will be upset by it for a while; after all, he's only two, and he's never been forced to leave something on his face with vapors going in his nose and mouth. It'd freak me out, too. We discussed switching from manual CPT to the Vest, but I told the doctor that we wanted to wait a little while longer because we did a "test run" recently with Cohen and the Vest, and he was, to put it mildly, less than thrilled. Emberlynn thought it was funny her first time on the Vest, but Cohen was completely terrified.

All in all, the kids' clinic visit had a positive outcome, despite the obvious reasons for clinic visits in the first place. They are both doing very well, and I can't ask for more than that.

Recipes by Request

Every week, I try to make at least one new recipe. I stumble upon recipes constantly in magazines, online, and in grocery store ads (namely Publix). For Christmas, I received a cookbook I had been eyeballing for a while called "Deceptively Delicious", which happens to be written by Jerry Seinfeld's wife, Jessica. The book has dozens of kid-friendly (and overall family-friendly) recipes that incorporate vegetables and fruits into common recipes without the kids knowing it. In other words, you are hiding the veggies. I have done this for quite some time now, but this book has given me tons more recipes to try using this method. I do jumping jacks inside when I see my kids eat the meals I have made that have veggies and/or fruits hidden in them (because they, like many kids, are quite picky). I make a lot of these recipes for dinner; it's an easy way to make a delicious, nutritious meal for my entire family.

Now that I am trying to lose weight, and because dinner is our family's "biggest" meal of the day, I try to make all my dinners as healthy as possible. I am going to share a few in this blog, all of which have been requested for me to share by at least one person. Enjoy, and be sure to let me know what you think if you try one of these recipes!


Easy Chicken and Cheese Enchiladas (requested by my friend Becca):

Ingredients:

• 1-10.75 oz. can cream of chicken soup (I use Campbell's Healthy Request)
• 1/2 cup sour cream (I use fat free)
• 1 cup Pace Picante sauce
• 2 tsp. chili powder
• 2 cups chopped cooked chicken (I use boneless skinless chicken breast)
• 1/2 cup shredded Monterey Jack cheese
• 6 flour tortillas (6"), warmed (I use whole wheat tortillas)
• 1 small tomato, chopped (optional)
• 1 green onion, sliced (optional)

Directions:

1. Stir the soup, sour cream, picante sauce, and chili powder in a medium bowl.

2. Stir 1 cup picante sauce mixture, chicken, and cheese in a large bowl.

3. Divide the chicken mixure among tortillas. Roll up the tortillas and place them seam-side down in a shallow baking dish. Pour remaining picante sauce mixture over the filled tortillas. Cover baking dish with aluminum foil.

4. Bake at 350 degrees for 40 minutes or until hot and bubbling. Top with tomato and onion (if preferred).

*These were pretty filling. I ate one and was done! I made a couple extra so Matt could have leftovers for lunch the next day.

Party Chicken (requested by my friend Laura): *very delicious but not one of the "healthier" meals I cook*

Ingredients:

• cooking spray (I use canola or olive oil)
• 3 tablespoons unsalted butter
• 1/4 cup flour
• large plastic zip-top bag
• 1 1/2 lb. boneless, skinless chicken breast fillets
• 1/8 tsp pepper
• 1-10.75 oz. can cream of chicken soup (I use healthy request)
• 1/2 cup light mayonnaise (I used Hellman's Light)
• 1 1/2 cup Panka break flakes (Japanase bread crumbs) (these are in the baking aisle next to the regular bread crumbs; at Walmart, they are about $1.50 a box)
• 1 cup shredded cheddar cheese

Directions:

1. Preheat oven to 425 degrees. Coat a 2-quart baking dish with cooking spray. Cut butter into small pieces and place in a medium bowl to soften.

2. Place flour in a large zip-top bag. Season chicken with flour; add to bag. Seal bag tightly; shake to coat. Remove chicken from bag and shake off excess flour. Arrange chicken in baking dish.

3. Combine soup and mayo in a second bowl; spread mixture evenly over chicken. Stir panko and cheese into softened butter, mixing until crumbly. Top chicken with cheese mixture; cover dish with foil. Bake 10 minutes.

4. Remove foil. Bake 10-15 more minutes or until top is golden and internal temp. of chicken reaches 165 degrees.

*This is another very filling dish. A couple of pieces of chicken plus a side of cooked veggies will fill you up easily!*

Healthy Homemade Mac 'n' Cheese #1 (requested by my mom and my sister Shauna)

*For this recipe, you have to steam and puree the cauliflower and/or butternut squash ahead of time. I puree a big batch at one time and freeze it in 1/2 cup portions so that I can easily use a puree when I need one. If you need help making the purees, let me know!*

Ingredients:

• 1 1/2 cups elbow macaroni (I use whole-grain or whole-wheat)
• nonstick cooking spray
• 1 tbsp olive oil
• 1 tbsp all-purpose flour
• 1/2 cup skim milk (or low-fat)
• 1/2 cup butternut squash or cauliflower puree
• 1 1/2 cups shredded cheddar cheese
• 4 oz. reduced-fat or nonfat cream cheese
• 1/2 tsp salt
• 1/8 tsp paprika
• 1/8 tsp pepper

Directions:

1. Bring a large pot of salted water to a boil, add the macaroni, and cook according to package directions until al dente. Drain in a colander.

2. While the macaroni is cooking, coat a large saucepan with cooking spray and heat over medium heat. Add the olive oil, then the flour, and cook, stirring constantly, until the mixture resembles a thick paste but has not browned, 1 to 2 minutes.

3. Add the milk and cook, stirring every now and then, until the mixture begins to thicken, 3 to 4 minutes. Add the vegetable puree, cheddar, cream cheese, and seasonings, and stir until the cheese is melted and sauce is smooth. Stir in the macaroni and serve warm.

The New Birthday Cake

I realized earlier my birthday is a week from today. I will be 25, but oh my, that is another blog entirely. Birthdays are days to celebrate, and we usually do that with food. I'm sure I won't have to worry about anyone making me a birthday cake, but we are supposed to go out to dinner. The thought that keeps popping into my mind is, "Where is somewhere we can go where I can eat something I enjoy but still eat healthy?" I know I can just eat a good salad pretty much anywhere we go, but let's face it, I am kind of cheating myself on my birthday by not having whatever I want and not caring. On the other hand, though, maybe it is my gift to myself to eat well and feel good knowing I made a good choice and not a bad one to make me feel guilty later.

So I guess this year, salad will be the new birthday dinner, and something good like a fruit salad (bring on those strawberries!) will be the new birthday cake. It's my party, and I'll cry if I want to...or in this case, I'll crave if I want to.

Craving the Good Stuff

Thumbing through the Kroger sale paper on Sunday as I prepared my grocery list and dinner menu for the week, I noticed they had strawberries on sale for $1.50 per container. I like strawberries, but I am sometimes reluctant to buy them because I have had occasions where they were sour or just not very sweet and therefore not satisfying. Once I saw them, however, and started thinking about them, I started craving them.

I went grocery shopping today at Kroger, and one of the items on my list was, you guessed it, strawberries. They smelled amazingly delectable, and I think I may have stood there smelling them a bit too long, thereby weirding out my fellow shoppers who were meandering close by. I even had Emberlynn smell them; she obliged and then wanted to hold them all through the store.

As soon as I got home and unloaded the groceries, I just had to taste one of them. I washed one off in the sink, took a bite, and wow....soooooo good. The best strawberry I have had in a while. Now I'm looking forward to having some with breakfast in the morning.

And I don't have to feel guilty, which might be the best part.