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.

Pigs and Oreos

Just a couple of things I heard from my kids today...

Emberlynn: "I think God heard me when I asked him for two brothers. So I could be like Olivia [the pig on Nick, Jr.]. Does that mean Olivia's God is a pig?"

Following this, I had to explain to her that God is the same everywhere, even to Olivia, but Olivia is make believe, and that is why the pigs can walk and talk like humans. I think this confused her more, to be honest. I don't think she wants to believe that Olivia isn't real.

And a few minutes later, this is what I heard from Cohen as he ate his Oreos, his after-lunch treat: "Mommy, these taste like magic!" Good job, Nabisco, on your magical cookie.

Mommy's Little Man

I know it's an old cliche that "it seems like just yesterday" my child was born. But it really does seem like only yesterday I was bringing my son into the world. I never knew I could love a little boy so much!

Cohen turned 2 a couple of weeks ago, and although this blog is a bit late, I'm sure anybody who has a 2-year-old will forgive me. He sure does keep me busy, as does my preschool-age daughter, who will be 4 on Valentine's Day. This blog is for him, but it's also for me because I get to relive the day he came into my life.

Christmas 2007 was approaching, and Cohen was due on New Year's Day. I was worried he'd end up being born on Christmas day and would be one of those kids who would grow up hating having a Christmas birthday. (Perhaps this was poor planning on Mommy and Daddy's part as far as conception.) At my 37-week check-up, I was 4 cm dilated but was not contracting, and my doctor told me that if I dilated any more at the next week's check-up but was not in labor she would induce me.

On Friday, December 21st, I brought my hospital bag to the doctor with me in hopes that I would have progressed enough to be induced. Sure enough, I was at about 4.5 cm and was told I was in "early latent labor" and could be induced. My doctor's words were, "Do you want to have a baby today?" to which I replied, "Oh, yes, please!" I loved being pregnant, but the past few months had been particularly uncomfortable for me, especially when it came to trying to sleep at night. I was ready to meet my son.

My doctor broke my water at about 1 pm, and I was given Pitocin soon after. Because I had gone into labor naturally with my daughter (my water broke on it's own and I contracted normally without any help from Pitocin), I had never had the Pitocin before. I was determined to have a natural labor with my son just as I had with Emberlynn (meaning: no epidural). My labor with my daughter was incredibly painful, but my labor with Cohen was beyond unbearable because of the Pitocin; however, I made it through without the epidural, and Cohen Micah Anderson was born at 8:12 pm weighing 7 pounds, 13 ounces and measuring 19.5 inches long.

We brought Cohen home just two days before Christmas. It definitely took some adjusting to go from having one child to two, but soon it just became second nature and felt like it had always been that way.

And what a busy and adventurous two years it has been! Cohen is a happy, fun-loving, friendly, and overall amazing little boy, and he is definitely a Mommy's boy (although he loves hanging out and having fun with Daddy, too). He loves reading, coloring, Elmo, guitars, and playing with his big sister.

Happy 2nd Birthday to my little man!

Something Silly This Way Comes

We all know kids are silly and "say the darndest things," so I thought I'd share some of the silly stuff overheard from these Anderson kids. Sharing this not only gives others a bit of a laugh but is also a great way for me to document all these little moments and sayings that I might otherwise forget.

• Pretty much every time Cohen eats, he has to announce what kinds of food he's eating. So the other night at dinner, I think we heard "Chicken! And corn! And fif fries!" about 400 times.
• We've all had the sniffles and coughies lately, so every time Cohen hears someone cough, you hear him say, "Oh, goodness!" from wherever he happens to be, even if it's across the house.
• My son has recently become obsessed with wisks. If he is within view of a wire wisk, he will yell, "Wisk!" repeatedly until someone gives it to him.
• Emberlynn is in that stage where she likes to make up words or say words she thinks sound funny. She takes it a step further by telling Cohen to say them. Prime example: In the car the other day, here is the conversation:

Emberlynn: "Cohen, say 'chewy'."

Cohen: "Chewy."

Emberlynn: "Say 'choppy'."

Cohen: "Choppy."

Emberlynn: "Say 'stinky'."

Cohen: "Stinky."

(Both laugh hysterically.)

• One of Emberlynn's favorite things to do is to ride her bike. Today, she came inside from riding it and said matter-of-factly, "I love my bike. I need to give it a hug."

• The kids have been watching the movie Cars a lot lately (they get to watch a DVD during their daily morning and evening treatments). It happened to come on TV today, so I put it on for Emberlynn, and when the commercials came on, she freaked out and said, "Uh-oh, Mommy! Cars is messed!" She then proceeded to bring me the remote and told me to fix it and got very upset when I told her I couldn't.

It's been a while

For someone who loves to write, I sure have been a lazy blogger. I don't even know when the last time I blogged was; I suppose I could have checked before starting this, but oh, well.

So I think I'll start by talking about my kids. Big surprise, right? They are my universe. Emberlynn turned 3 in February. She is my goofy and gorgeous girl who makes me laugh every day and who probably has a higher I.Q. than I do. I am amazed at how smart she is, so I must brag. The girl knows her entire alphabet, can recognize all the letters (uppercase and lowercase), and can tell you examples of words that begin with certain letters (i.e., a is for apple and airplane...). She can count into the seventies and recognizes numbers into the twenties. She knows all her colors and shapes (even pentagon and octagon, people). She has a love for reading, a love we both share, and she could read for hours. Aside from her brilliance :o), she is a wonderful big sister who shares with her brother (as much as you would expect a 3-year-old to share, anyway) and shows such warmth and empathy with him. I realize they will fight as brothers and sisters do, and more so as they get older, but I am grateful they are close in age and can play together so well. I love seeing them together, making each other laugh and just being siblings. Cohen, who is 16 months old now, is a big bundle of energy and smiles more than any kid I've ever seen. His whole face lights up when he smiles, and he melts my heart. I love his hugs and wish I could bottle them so that I could always have them because as he grow older, I know the hugs will be fewer. I never thought I could love a little boy so much. He is loving and friendly and silly, and I love everything about him. He seems to be developing a love of books just like his big sister, and he follows her around and learns so much from her.

I could go on and on about my kids. But now I'll move onto my husband. Matt wants to go to school and get a college education. I want that for him, too, but with him working full time, he wouldn't have a lot of family time if he tacked school onto that. I think he has decided to hold off for a while, but I guess I feel like I have prevented him from following that path. He had to withdraw his enrollment from college when I became pregnant with Emberlynn in 2005 so that he could work full time to help support us. He chose us over his education. He put his family first from the very beginning, but I've always worried he would eventually resent me for it. He says he doesn't, but I still feel that there is some resentment there. I, myself, would like to finish my college education and get my 4-year degree, but I know my purpose right now is to take care of my children. They and and their health are more important than anything else.

So...I could go on about this and that, but it's getting late, and I'm getting sleepy and therefore somewhat delirious.

Cohen's Story

I realized I have not yet posted a blog about Cohen as far as how he was diagnosed with CF. I meant to do this several weeks ago when we were raising money for CFF. I still want to share it with those who may or may not know the story.

Because Matt and I each carry a defective gene for CF, every child we have has a 1 in 4 chance of having the disease. We, of course, did not know we carried the genes until after we had Emberlynn and she was diagnosed with CF because a person can only have the disease if both parents are carriers. It’s just like if we each carried a recessive gene for blue eyes; we don’t have blue eyes, but our children could potentially have blue eyes (and, incidentally, Emberlynn does have blue eyes).

It broke my heart knowing these odds. Matt and I knew we wanted more children. I could not bare the thought of thinking I would never have another child because we let the chances of them having this disease stop us. We talked about having another child soon after Emberlynn turned one. We decided that even though there was a chance of having another child with CF, we would be prepared for it and would at least be well-versed in the disease.

I found out I was expecting in April and was given a due date of January 1st. From the beginning, I suspected I was having a boy, which was exciting. It would be wonderful to have both a daughter and a son, and I looked forward to the different challenges of a boy as opposed to a girl.

For the duration of my pregnancy, the thought of the CF possibility was always firmly implanted in my mind, but I tried to stay positive. Family and friends remained optimistic, so I tried to feed off that.

My beautiful son Cohen Micah was born December 21, 2007. He was by far the most beautiful baby boy I have ever laid eyes on. His head was full of dark, silky hair, and his eyes were a deep blue. I kept saying to Matt, “Isn’t he beautiful?” He was absolutely perfect.

We were not able to have him tested in the hospital, so I had to schedule an appointment at Vanderbilt to have them draw blood to do a genetic test. Because Emberlynn has CF, they know the exact genes they would need to look for in the DNA, so a sweat test would be unnecessary to test him. In mid-January, when he was three weeks old, we had the blood drawn. I was told it would take anywhere from two to four weeks to have the results back.

Even though I was a bundle of nerves waiting for the results to come back, I was trying to stay positive. Cohen was steadily gaining weight (as opposed to Emberlynn, who struggled with weight gain from the very beginning), so I told myself it was a sign that he may not have it. But there was this ever-present fear that he was not fine. I tried to suppress it, but it was always there.

On the afternoon of Wednesday, February 6, Matt and I were sitting on the couch watching TV. Cohen was sleeping soundly on Matt’s chest, and my phone rang. I recognized the number as a Vanderbilt number, and I was immediately tense. When I answered, it was a nurse who calmly explained that Cohen’s results had come back and were the same as Emberlynn’s, which meant he, too, had CF.

As soon as I hung up with the nurse, I broke down in hysterics. Matt knew how the conversation had gone without my explaining anything. I took Cohen from him and pulled my baby boy close to me, as if holding him and whispering how sorry I was could somehow take it away.

I kept saying to Matt, “What have we done to our babies?” I felt guilty that we brought another child into the world knowing what the consequences could be. I just wanted to take it away from him and Emberlynn and for me to be the one who would have to suffer through life instead of them.

Even though I told myself from the beginning of the pregnancy that I would be prepared and I would be able to handle it, no amount of convincing can ever prepare you to hear news like that all over again. I felt like I was back in the exam room at Vanderbilt the day Emberlynn was diagnosed. It was like a recurring nightmare from which you wake up screaming.

And here we are now. Cohen is nearly a year old, which I can barely get my mind around. He is, without a doubt, a mommy’s boy, which is fine by me. I love his big, contagious grin, his belly laughs, his funny faces, the crazy sounds he makes--I can’t get enough of him. I would not trade my son or anything about him.

Having two children with CF is very difficult. Matt and I are responsible not only for the normal things parents do but also for keeping our children as healthy as we can by doing therapies and treatments for them. We have good days and bad days. Most days go by and I just go with it, not knowing a life any different. But there are some days I just cry because the reality of it all rips my heart to shreds. My children have a disease that can and will most likely take their life one day. And if you have children, you know that having something like that in the back of your mind will eat at you.

I have never been angry with God. I am extremely blessed to have my children, and I suppose God felt I could handle this kind of thing. I will admit I have questioned Him, but most of the time, I just pray that He keeps His hand over my children and to give me the strength to carry on and to help me be a good mom to my children. I hope when they get older that they can sincerely say that I did okay. Because I’m really trying.  I’m doing the best I can.