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.

The Chosen Mothers

I found this posted on a fellow CF mom's blog and wanted to share. Some days are hard when it comes to taking care of kids with special health needs, but I know that God chose me to be their mom for a reason. He entrusted them to me for as long as I am allowed to have them, and I would never, ever change that...

The Chosen Mothers by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?


Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."


Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you."

"No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

My Plate Overfloweth

As I type this, my three-year-old son Cohen (soon to be four...wow, where has the time gone...) is running around in his sister's dress up clothes, adorned in a purple skirt, a butterfly tiara, plastic high-heels, and a pair of sunglasses with one of the lenses missing. He is also golfing with a plastic golf club. It's quite a sight. I have many pictures of him dressed up in similar ways, which I'm sure he will totally appreciate in later years, especially when he starts dating.

Cohen has been struggling with his weight gain (or lack thereof) for nearly a year now, and the topic of a feeding tube has come up several times in the last few clinic visits (more about that in previous blogs, if you're interested). His next clinic visit is next week, only a month from the last visit because they want to see if his growth is progressing and to therefore determine what our next step will be (tube or no tube). So I have been weighing him every week since the last visit and am happy to report he has put on two pounds in just four weeks, which I think is pretty significant. I hope the docs will think so, too.

As many of you know, I took on the challenge of homeschooling my oldest, Emberlynn, a couple of months ago when she started kindergarten. She is enjoying it and picks up everything with ease, but sometimes I feel like I have bitten off more than I can chew. We chose homeschooling because it was the most logical thing to do given the kids' treatment schedules; we felt she would have no life beyond school and treatments. She would have to get up very early every day and therefore go to bed very early at night (about seven p.m. to be able to get about ten hours). Between school, homework, dinner, treatments, and a normal bed routine (bath, brushing teeth, reading books), we didn't see how it would be possible to get it all done and her still have time to be a kid. Granted, there are plenty of CFers out there who do go to school and have similar routines, so I realize it can be done, but we felt like since I stay at home, it only seemed right to homeschool and free up time in her day for her to do other things (playing with her brother, going to gymnastics, etc.).

But I am admitting to everyone that my plate is just too full, and we have considered putting her in regular school next year (if not next year then the year after when Cohen goes to kindergarten so that they would be going together). Plus, part of me feels I am depriving Emberlynn of a lot of social opportunities that she would get if she was in an actual school around other kids. She really loved preschool, so I know she would do well in a school setting, but she also tells me she likes doing school at home.

I've really been at war with myself over this lately, wondering if we have made the right decision to homeschool. There are so many pros, but there are several cons, too, and I can't seem to ignore those. The bottom line is that I want my daughter to thrive and have the best life possible; I want this for all my kids, obviously. If I stop homeschooling, I will feel like I have failed in a way, but if I continue, I don't know that I can give it my all like I want to, which would not be by choice but because I am just not Supermom. And I can't do it all. And if you know me well, you know how hard it is for me to admit that. My husband tells me all the time that I can't do it all and am not expected to, but day in and day out, I beat myself up over stupid things that I feel like I should have gotten done, even if it's as petty as leaving dishes in the sink at night because I didn't get around to doing them.

What it comes down to is how my kids will see me as they look back when they are older. I don't want them to remember me as a crazy, stressed-out mom who felt like she had to do everything or would freak out. If that means I don't homeschool, then maybe I'm doing them a favor. For now, as they say, we will "keep on keeping on" and hope for the best.

"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.

So Little Time

Where to begin? It's been months since I have posted; so long, in fact, that I'm too ashamed to even check when the last blog was posted. I constantly think to myself, "Hey, I need to blog about [insert topic here]," but then I never quite get around to it. For someone who used to consider herself a writer, this is very, very sad.

I could probably go on forever about everything that has happened over the last few months; however, I'll try to be brief, but I make no promises.

Most recently, my bouncing baby boy Kyden Isaiah was born on June 9, just eight days before my estimated due date. (My due date was also my birthday, so I'm glad he came sooner so that we could keep our birthdays to ourselves.) I did not go into labor on my own, nor did my water break beforehand. At 35 weeks, I was dilated to two, then to 3 at 37 weeks, and then 4 at 38 weeks. My doctor was convinced I wasn't going to make it even to my 38th week prenatal visit, so when I showed up to my 39-week visit, he was surprised to see my waddling in, still pregnant. After my examination showed I was past 5 cm and almost completely effaced, he decided to admit me that day (which made me do cartwheels inside) and break my water. Seven hours and 45 minutes later, after a completely drug-free birth, my baby boy was born at 11:15 pm weighing 7 pounds, 3 ounces and measuring 18 1/2 inches long. I was totally in love; there went another piece of my heart, stolen by another precious gift from God. I thought I couldn't love another little boy like I love Cohen, but I was so wrong. The love just grows.

The million-dollar question everyone was wondering about my entire pregnancy was whether Kyden would have CF like his older siblings. We prayed he would be healthy, but I was worried anyway, though I tried not to show it. His blood was drawn at Vandy and sent to a lab for DNA testing, and three weeks later, on July 20 (five days shy of the five-year anniversary of Emberlynn being diagnosed with CF), we found out that Kyden does NOT have CF. (He is, however, a carrier, but the only way this will affect him is if he has children with another carrier.) I received the call as I was driving to a doctor appointment, and I won't ever forget the feeling of relief that surged through my body and the tears I cried. I kept saying out loud, "He's ok. He's ok." I just couldn't believe it; I have a healthy baby.

I'll be honest, though. I keep waiting for the other shoe to drop, like they are going to call me and say, "Oh, we made a mistake...he actually DOES have CF." I have become so accustomed to having children with a disease that I have it ingrained in my mind that Matt and I can't have healthy children. It sounds terrible that I would think that, but I don't know what it's like to have a child with no health problems. I don't know what it's like to have a child gain weight normally who doesn't have to take medications constantly or have daily therapies; I don't know what it's like not freaking out inside when my child starts to show signs of sickness that could land them in the hospital and irreversibly damage their lungs. I know I should stop thinking all this craziness and just revel in the fact that my child is healthy and enjoy every little moment with him, but this is such new territory for me, and I have to retrain my brain, I suppose. And, as my friend Nikki reminded me, I have to remember to take it one day at a time and not worry about what may become.

Right now, Kyden is eight weeks old and such a joy, I can't even put it into words. He melts my heart just by looking at him, and despite being sleep-deprived and spread so thin most days, I am loving having three kids and am so glad we decided to let our family grow. Kyden fits right in. Emberlynn and Cohen absolutely adore him, and they have not shown a speck of jealously. I was initially worried that Cohen would have a difficult time adjusting since he has a) been the baby for three and a half years and b) is a big Mommy's boy, but he thinks Kyden is totally awesome and can't get enough of him. We actually have to tell the kids to back off a little sometimes because they can be a bit TOO loving at times, but all in all, it's wonderful knowing how much they love having a baby brother.

Emberlynn is five and a half and is officially a kindergartener. We decided a couple of years ago that I would be homeschooling the kids, hopefully at least through elementary school. So this week, we completed our second week of homeschooling. Emberlynn looks forward to it each day and has been doing very well. I must brag about my daughter for a moment, though: She is very intelligent and already knows most of the kindergarten cirruculum standards, and if she could "test out" of it, I'm sure she would with flying colors, but she is enjoying all the activities we have been doing and picking up on new information very quickly. I love being able to teach her and experience it with her.

Health-wise, Emberlynn has been doing well. I think she's had one cold in the last year and maybe one virus, so overall, she has stayed pretty healthy. I always get worried when winter comes around with all the flu and cold possiblities, so in a few months, I'll be biting my nails that praying that my kids won't get sick enough to warrant a hospital visit.

My "big little man" Cohen has been doing ok as far as his health goes, expect for his lack of weight gain over the last several months. They have expressed concern at CF clinic, and though he is not in the "red zone" (green zone is where they want CFers to be, yellow zone is a "cautionary" zone, which is where he is right now, and the red zone means action needs to be taken to improve their health), they are worried he will continue to grow in height but not gain weight. He eats well, but around his third birthday, he quit drinking Pediasure, which was a major source of calories in his diet. (One container of Pedisure has 237 calories, and he was drinking three to four containers a day). So essentially, he lost about 700-950 calories a day, which is a big deal. The only beverages he will drink are water or tea. He has never liked juice, so the high-calorie juice-like drinks we have tried are a no-go. He won't even drink regular milk, so we can't even get the extra calories in there. I add calories where I can (adding butter, cream, and cheese to certain foods he eats), and he eats three meals plus two snacks a day, but his weight just won't budge. He's pretty much at a "plateau", and we are constantly trying to come up with ideas. Recently, I have been able to get him to drink Pediasure using what I can not call anything else but bribery, I'll admit. He loves tea, and although he is not allowed to have very much each day anyway, he is not allowed to have any unless he drinks a certain amount of Pediasure. Though I am not proud of my method, it has worked, and he has been drinking a container of Pediasure a day, which at least gives him almost 250 extra calories.

If Cohen does not start gaining weight, and he starts dropping on the growth chart and falling into the "red zone", there have already been discussions about g-tube placement so that we can give him high-calorie supplements in overnight feeds, which is what we have done with Emberlynn since she was eighteen months old. I absolutely refuse to go that route unless it's necessary. I want it to be a last resort. I know my son, and he will not be easy-going with having a huge tube coming out of his stomach post-surgery; he would totally rip that thing out. And beyond the surgery and recovery, he would have a very difficult time adjusting to being connected to a feeding tube every night. It was easier for Emberlynn because she was so young and still had such a "go with the flow" attitude. Cohen is three and would be very defiant with something like that. So when I say it has to be a last resort, I am not wavering. We will do all within our power to help him get back on track with his weight gain sans that g-tube.

Emberlynn and Cohen's next clinic visit is August 25th, so I will try to post about that to give an update on weight checks, etc.

I'm hoping this gives a good enough update on what's been going on with us over these last many months. I've promised myself to blog more often, but I'm really now sure how well I'll be able to stick to it. Once a month would be ideal, but I guess we'll see.