Tuesday, January 31, 2012

The Memory Keepers

I have been following a blog written by another mom of three. What appeals to me the most is that she is super-hilarious, and reading her blog is just refreshing to me. She also has some great recipes, which also happen to be gluten-free (because of her middle child, daughter Lila), which are what brought me to her blog to begin with. Her most recent post sums up exactly how I feel about blogging. In short, she says that mothers "blog to tell our story. We are the memory keepers." This is so, so true. If people like to read my blog, that's fine. But it's more for myself and my family so that we can be able to read about things that happened years before, and when my kids are grown and I'm missing them at this age, I know I will appreciate this blog. You can read her full post here.

I really want to blog more, but there is the issue of time. I know you hear that from everyone: "I don't have time." And I'll admit, I do have the time, but I always seem to find something that needs to be done that takes precedence over blogging. Then the time gets away from me, and it's weeks and even months between blogs. I make a promise, even if it's only to myself, that I will blog more regularly, but the cycle restarts.

In my previous life when I was not a wife and mom (I say previous life because my carefree, single life was vastly different than it is now), I was a writer. When I wasn't working and going to school and hanging out with friends, writing was my hobby and favorite pasttime. It was my most intimate relationship, you could say. I could get lost in it for hours. Now writing is like an ex that I've never gotten over: out of my life, always thinking about it, and sometimes running into it and promising I will keep in touch even though I don't once we part ways again. Writing was what defined me, and now all that defines me is being someone's wife and someone's mom.

Don't get me wrong, I love my husband with every ounce of my being, and I absolutely adore and cherish my children. I would never trade the life I have now for any promises in the world. I am blessed beyond words to be able to stay at home with my kids and do all the things that come with the job of SAHM. But here's the thing: One day, it will all end. My kids will be grown, and my job will be done. Well, yes, I know I will always be a mom, but they won't need me in the same ways they do now. When the day comes that Matt and I are empty-nesters, I don't want to be left wondering what to do next.

But back to the point: I want to write again, even if it's just blogging a few lines each day, just to say, "Hey, Cohen had a snotty nose today and blew snot bubbles" or "Kyden laughed so hard at his brother's silly antics" or "Emberlynn read an entire book alone today." Or to blog about something besides my children, which sometimes seems impossible because they are essentially my life. My sister suggested doing a food blog, but because keeping up with one blog is challenging enough and having two might cause me to have an aneurysm, I will incorporate my cooking and baking adventures into this one.

And because duty calls (it's currently time for my older two kids' treatments), I will end this with a picture of, you guessed it, my adorable kiddos:

(Ignore the crazy-looking lady on the right, however. She's just there to hold up the adorable infant.)

Monday, January 30, 2012

Kite-flying

I can't say I'm surprised that we have had some unseasonable weather. This is Tennessee, after all, where we have had nineties in October and snow in April. We have had a mild January, with temps that make it feel more like Spring, and I have appreciated it for several reasons (not freezing, for one, followed by more outside time for the kids and lower heating bills!).

Since today was in the sixties, and it was a beautiful sunny day, the kids enjoyed some outdoor play time after lunch and again after nap time and school time (the boys nap and Emberlynn does her school work). It just so happens that Emberlynn is learning about air in science and how air pressure helps objects (like planes) stay in the air. We made paper air planes and flew them in the house, and I told Emberlynn that once we went outside after the boys woke up that we would fly a kite also. This would be the perfect day because there was a nice breeze to keep the kite up.

At first, she was confused and said, "But we can't fly a kite. It isn't Spring. It's Winter." If only the weather was as black and white as her assumption. I explained that it was a warm Winter day and that the weather was just right for kite-flying. She was SUPER excited, so much so that the minute Cohen sleepily walked out of his room after nap, she told him all about it and was telling him to get his shoes on. I had to make her wait since they needed to have snack time first.

Once outside and I got the kite assembled correctly (it took me a few minutes, as I have never actually assembled a kite, only flown one), I held the end of the kite and showed her how to hold the handle with the string and run until it started flying up. She and Cohen took turns, laughing every time it would crash. I think they were more thrilled with the crashing part than anything else. Cohen was the first one to keep it up the air, but I think he got bored with it just hanging out up there and wanted it to crash again. Emberlynn got it to stay up for a while during her next turn. I showed her how to give it more slack so that it would fly even higher.

I think they could have stayed outside all afternoon flying that dollar-store kite. I felt the same way, only I had to go do this important adult thing called making dinner. I was grateful for being able to experience their first times flying a kite.

I wish I had some pictures or, better yet, videos, of them flying the kite, but this was one of those times when being in the moment was more important than being behind the camera. I'm going to remember the looks on their faces and the joy in their laugh as they discovered the magic in the simplicity of flying a kite.

Friday, January 6, 2012

This may be my shortest blog ever

Just blogging to say that one of my "resolutions" (I say that for lack of a better word because I think "New Year's Resolutions" are one thing in society that sets people up to fail and feel like failures...but that's another post entirely) is to blog regularly. I've said this before, but if you know me at all and know what my life is like, I think people will cut me some slack. My goal is to blog once a week, or at least a few times a month. It's not so much for everyone else's interest so much as for my own record and benefit, plus writing has always been therapeutic for me.

But at this moment, there is a pretty awesome guy to whom I'm married who is ready to snuggle up with me and watch a movie, so I'm choosing him over blogging right now. He should feel pretty special. ;-)

Thursday, October 6, 2011

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.

Sunday, October 2, 2011

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."

Monday, September 26, 2011

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.

Thursday, September 1, 2011

"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.

Friday, August 5, 2011

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.

Friday, November 19, 2010

In Everything, Give Thanks

On October 10th, we learned we are expecting our third child. We were elated beyond words. We had been planning this for a long time and had been trying for several months, asking the Lord in our prayers to bless us with another child if it was His will. And He definitely showed his sense of humor because I am due on my birthday.

Now, if we were any "normal" family with completely "normal" kids, most people would just be happy with us and not think much about it. Those who have known us for years know that we have always wanted three or four children from the start, before we knew that Cystic Fibrosis would become the center of our lives. But there are those people out there, whether they are willing to admit it or not, who think we are completely stupid, negligent, moronic, naive, irresponsible...you pick the adjective, and I'm sure people have thought it. Does it MATTER what others think about what I do, whether it's wearing a certain pair of shoes with a certain shirt or choosing to have another child? Well, no. I know that. But I need to set some things straight for my own peace of mind.

First of all, NO ONE is guaranteed a healthy child, no matter how healthy you are or seem and no matter how "by the book" you do things before, during, and after pregnancy. Most mothers-to-be have an image in their minds of their perfect baby and don't give much thought to the possibility that their child will be anything but. Take for example an article I read recently about a young mother who was preparing to deliver her second daughter, who had planned every miniscule detail down for her baby's birth and had these picture-perfect images of her two daughters growing up together and doing all the sisterly things you would imagine. Her labor went beautifully, and she delivered a gorgeous baby girl--who had Down Syndrome. Or we can get closer to home and talk about my sister, who had her first baby, a daughter, in 2004, who was later found to be profoundly deaf in one ear and moderately deaf in the other. I know several other women who have lost babies, either before or after birth, for various reasons, but I won't be mentioning names or specifics because I haven't asked for their permission. But the point of mentioning any of this is, despite having unhealthy children, it doesn't mean they don't want more children later on or that their decision to have more will be dictated by those circumstances.

Yes, my situation is a bit different. What my children have is genetic and life-threatening. Every child we have has a 25% chance of having CF and a 50% chance of being a carrier of the gene (just like me and Matt, which is nothing to worry about unless two carriers have children together, obviously), but essentially, every child has a 75% chance of being fine, which makes the "odds" in our favor. But I know without a doubt that God chose us, for whatever reason, to be the parents of these children. He knew, even if we didn't and still don't understand it, that we are strong enough to be able to perservere through the struggles that come with being CF parents (just like so many other parents of children with chronic conditions). I also know He wants to give us the gift of more children, otherwise He wouldn't have and I would not be carrying this precious life inside me right now. So I dare anyone to question God about his will and ways because you won't win the argument.

Am I worried my third child with have CF? Honestly, even though the thought is always in the back of my mind, it hasn't scared me yet, and I don't know that it will. I am learning that "worry is futile and faith is fruitful" and that worrying will get me nowhere and only make me miserable. My faith in God's plan for us and this baby is not an "I believe everything will be hunky dorey" faith, it's an "I believe God will give us only what we can handle" faith. So if that means we are given another child with CF to love and raise, then that's what we are going to do, and we are going to be thankful for the gift of getting to be parents to another amazing gift, and as my pastor reminded us, "the chance to raise another saint." Ephesians 5:20 says, "Always give thanks to God the Father for everything..." So even if we don't always have the picture-perfect life, or 100% healthy kids, we are thankful for all we do have and will continue to be thankful no matter what circumstances in which we find ourselves.

The bottom line is don't judge what you don't understand. If you have been blessed with healthy children and a relatively "normal" life, remember to praise our Lord and give thanks and not to take it for granted because you never know when life can take an abrupt turn. And please don't claim you know how it is to wear these shoes of mine until you've walked in them or what you would do in my situation.

And look at it this way: If we had chosen to not have any children after Emberlynn based on the CF circumstances, we wouldn't have our wonderful, loving, fun, precious son Cohen, who brings so much joy to my life that my world would be absolutely broken without him. And we wouldn't have this new little baby on the way, who we already love and adore even at the size of just a jelly bean.

Thursday, November 18, 2010

Scans, Shots, and Silly Kids

Today we trekked to Vanderbilt for the last CF Clinic visit of the year (and hopefully the last Vanderbilt visit of the year period, in hopes that Emberlynn and Cohen don't pick up any illnesses that warrant hospital stays).

My mom went with us at my request because Emberlynn was scheduled to receive the first of what I hope is very few CT scans (read my last CF Clinic post for details on my initial feelings about the CT), and I knew I would be unable to be in the room with her due to being pregnant, so I asked Mom to stand with her because I didn't want her to be scared all by herself. Cohen and I weren't even allowed to go down the hall with them, which I understood but was still a bit disappointed about since I am always worried about the kids when they have to undergo new procedures. In the meantime, Cohen and I watched the trains in the lobby and went outside to see the koi fish in the pond. The CT scan was not supposed to take very long, but I was still surprised when Mom and Emberlynn were in and out within five minutes. Mom said she did awesome; she did everything she was told and had no issues. Emberlynn told me, "He took my picture!"

Afterward, we headed upstairs for CF Clinic. The kids were weighed and measured as usual (Emberlynn gained a little over a pound and Cohen stayed the same, none of which is worrisome, as they are still in the "green" zone for BMI). Later in our visit, the doctor went over the CT scan results (and we were able to see the images on the computer screen) and explained everything very well to us. He didn't give us the "final" say on the lung findings (a radiologist will look over it to look for anything that might be serious), but he said from what he could see, they looked "normal" for a kid with CF (all CFers lungs look abnormal in some shape or form, we were told). He did notice some mucus "build-up" in the bronchial areas, which is normal but can cause problems if it stays there and builds and builds. He asked what her normal chest clearance routine is like, and I told him Vest twice a day and Pulmozyme (an inhaled medication) once a day, and he said that we just needed to continue it and not slack off (not something he needs to worry about).

We didn't have to see the nutritionist today, which is nice (not that we don't like her, it's just one less person we have to worry about seeing that ends up taking up more time on an already long day with two kids who get bored pretty easily in a room that has no forms of entertainment). An RT (respiratory therapist) came in to measure Cohen because he is old enough for a Vest, but alas, his chest is still too small by 1/2 inch (it's just as well, though, because the Vest terrifies him); therefore, we will continue with manual CPT until he gets big enough for the Vest (they will measure him again at their next clinic visit in February).

Emberlynn was due for her annual labs. In the past, this is something we have had to go to the next floor to have done, but now they have someone come to the exam room to draw blood, so we didn't have to go anywhere, which was nice. Emberlynn still cried a little despite have the EMLA cream to numb her arm (probably because she saw a needle going into her arm, which is scary for most kids anyway). Neither of the kids likes to see the other upset, so it was no surprise when Cohen ran to me and expressed his concern for his sister: "Emberlynn is crying! Her arm is hurt!"

Finally, both kids needed their flu shots. Shots are always something I forewarn them about. I let them know that they will be getting one (or several) and that it hurts for a minute but then it will feel better. Both always seem fine with this until it's time for the actual shot. But they were troopers as usual. As the nurse who took care of them through their entire appointment was preparing Cohen's flu shot, she told me that my kids are very well-behaved and that she was impressed by their cooperation with everything. It's always nice to receive compliments, especially in the midst of a day that is never looked forward to, and I thanked her.

And since part of the title of this post is "silly kids", I will say in closing that, due to a long day resulting in no naps, my kids got the giggles this afternoon, making them even sillier than they already normally are. I love my kiddos, but this Mommy is most definitely looking forward to their bedtime tonight and a lazy day at home tomorrow.