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.

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.

"I can't believe I'm six!"

This is what my daughter said today on her sixth birthday. Probably because I kept saying, "I can't believe you are going to be six!" on the weeks and days leading up to it.

Six years ago, just before midnight on February 13th, I was going to bed dreading having to work the next day when my water broke. Well, it didn't break so much as slightly trickle, really. Which is why I thought maybe I had peed on myself. I wasn't due for two more weeks, and "they" (whoever "they" are) say that first babies tend to be late, so I figured it would be early March before Emberlynn Grace would, well, "grace" us with her presence (pun totally intended). My husband and mom finally convinced me I should go to the hospital, even though I knew I would be upset with myself if I had, indeed, peed on myself.

But nearly thirteen hours later, I was pushing, in so much pain but with so much anticipation, excited but scared beyond measure, and she was here. When I saw her face, there were no words. Just tears and floods of overwhelming, unexplainable emotion.

My daughter has no idea how much I love her, that she is a piece of my heart walking around on the outside of my body. She has no idea I was only twenty-one when I had her, that I had no real clue what I was doing, even though I had prepared for parenthood in all the ways I knew how. I wanted to be the perfect mom, and I set these impossible standards for myself. She has no idea that at the end of every day, I question my mothering, hoping that even if I do things wrong or in ways differently than how I planned, she will still feel loved and cherished.

She is my only daughter, and she may always be my only daughter, and I think I have taken that for granted. She isn't a little baby girl anymore. I have this one distinct memory of when she was a newborn baby: she was asleep in the middle of my bed, and I lay next to her watching her for what seemed like hours, thinking how fast she would grow and trying to just take in that moment. I swore I'd never forget what her face looked like at that moment, how she smelled, how small her hands were, how quick her breaths were. Because I knew I would blink, and it would be gone.

Well, I blinked again, and now she is six.

Happy Birthday to my beautiful, intelligent, creative, loving, silly, amazing daughter.

Emberlynn-isms

My daughter, who is fast approaching four years old (wow, how time flies) never ceases to amaze, surprise, and entertain me. She has always brought a smile to my face, but there are more and more moments where she just plain makes me laugh with her silliness. I think the greatest thing about it is that most of the time, she has no idea she has said or done anything humorous until everyone around her is laughing. I, of course, had to blog about these little moments not only to share them with others (who care to know, anyway) but also to document them for myself. So here are some "Emberlynn-isms":

• Emberlynn has been a Christmas fanatic since she was a toddler. She loves the lights, the decorations, the candy, and Christmas trees, so it's no suprise she has found a love for Christmas music. Thanks to my keeping our radio tuned to a station that plays nothing but Christmas music from Thanksgiving through Christmas (for which my husband lacks both enthusiasm and appreciation: "What do you mean, you don't want to hear 'Jingle Bell Rock' for the 879th time?") and also to Emberlynn's preschool music teacher for singing holiday songs with the children, Emberlynn has been quite the performer. Her favorite seems to be "Jingle Bells," and apparently, the lyrics have changed, since this is how Emberlynn sings it: "Jingle bells, jingle bells, jingle all the way/Oh, what fun it is to ride in a stop in stop in say."
• Speaking of songs, a couple of months ago, Emberlynn started singing a song she had learned from school that went along to the tune of "Father Abraham." She would sing, "Father Gummy Bird had seven chicks, and seven chicks had Father Gummy Bird." Gummy Bird? I wondered. I finally asked her teacher. The song is called "Father Goony Bird." I decided Gummy Bird is much more fun.
• Emberlynn accompanied me to get my hair cut several months ago, and I was getting quite a bit cut off during this particular visit. As Emberlynn watched the beautician cut my hair, she cried, "Where'd Mommy's hair go?! Put it back on!"
• Because Emberlynn has Cystic Fibrosis, she is on a high-calorie diet. She is an incredibly persnickety child when it comes to food and eating, so we don't get as much in her as we'd like. We recently tried giving her a can of Carnation Instant Breakfast Plus, which has about 375 calories per 8-oz. can. The flavor was vanilla. We told her it was vanilla milk. She tried it and liked it. Later, she asked, "Can I have my gamilla milk, please?" Similarly, she has a friend named Camilla whom she calls "Gamilla." And while we're on the subject of cute mispronunciations, she calls her pajamas "gajamas."
• Although she is usually very cooperative when it comes to laying down for naps, Emberlynn, like any child her age, sometimes whines that she doesn't want to take a nap. One afternoon recently, I told Emberlynn she had fifteen minutes until nap time. She replied, "I don't need to take a nap." I told her she did need to take a nap or she'd be tired all day and that taking naps also keeps her healthy and helps her grow. A few minutes later, she came up to me and said, "Mommy, I don't need to be healthy."
• Emberlynn and Cohen play together constantly (not always well, but sibling rivalry is only to be expected), and sometimes I hear Emberlynn say thing to Cohen that we have said to him. For example, if he is having trouble with something, she will say, "Do you need help, son?"
• Tonight at bedtime, I noticed the left side of Em's face had a bit of a rash covering her cheek. I said to my husband, "Oh, her face is broken out." She looked at me with a bit of worry and said, "Oh, no. My face is broken!"

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.

Emberlynn's Story

Most of you have heard this before, and Lord knows I've told so many people that the words just tumble out like a rehearsed scene. But because we are trying to raise money for the CF Foundation and are trying to educate people on this disease, I thought I would first start by sharing when CF became a major part of our lives.

Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.

At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare much better.

Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly crept up, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing. Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'

Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.

In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.

On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.

Fast-forward just over two years later, and Emberlynn is a happy, well-adjusted, loving, and thriving two-and-a-half-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.

I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.