Germs, BE GONE!!

Today's events were rough enough that I returned to blogging.  I think it was really the compilation of this week's events just building up to the point that I reached my threshold of calm and collected, but whatever.  I did not realize it had been so incredibly long that I have been away and my return is overdue.  Had it not been my meltdown, I am sure something would have driven me to become reacquainted with my blog.  Having said all of that...hello again!!  Truth is, I have missed blogging and my absence has been a sad testament to my son's journey with Citrullinemia.  He deserves for the world to know what he lives with each and every day.  Some days are way easier than others, but each day presents some battle, big or small, from which he emerges victorious!  Today...well let's just jump right in!

Caroline has been sick since Friday, missing school Monday, Tuesday and Wednesday so far.  Coughing non-stop, fever, congestion, ear infection to boot!  It has not been a great week for her, and while I hate for her to be miserable and sick, the truth is...I am relieved when it is her and not Coulby.  I know how that must sound, but when Coulby gets sick it is a constant worry about whether he will make it through the entire illness at home or will end up bed ridden with an IV at Johns Hopkins.  Of my two children, Coulby is usually the one who gets sick more often, and with him having just gotten over having croup, I was relieved that it was not him who was sick again.  My relief was fleeting.

The school called me yesterday to tell me "Coulby is not quite acting himself" and to inform me that after drinking his medicated formula, he threw up.  Nothing major, just some clear fluid.  Oh, and his balance was off.  AND he chose to lay in the nurse's office rather than rejoin his classmates in indoor recess.  That's not my kid.  He LOVES indoor recess.  In fact, that is one of my tried and true bargaining tools in the mornings to get Coulby to eat breakfast and take his medication willingly.  You see, indoor recess means he can bring a toy from home to play with at school.  Yesterday he had painstakingly chosen a Hot Wheels car to bring to school and triple checked to make sure I had in fact remembered to put it in his backpack.  So yeah...I knew he must really not be feeling well to pass up his chance to play with it.  I picked Coulby up from school and let the worrying begin!  His symptoms matched Caroline's, but the day and evening went fairly smoothly.

Today Coulby did not have an appetite.  He would not drink anything other than water, which hydrates him but does not provide him with the calories his body so desperately needs when he is sick.  He has been gagging on his formula (although I did not really think much of that because he does that when sick or well).  It was this evening that threw me for a loop and pushed me over the edge.  Having a sick child is stressful.  Having two sick children is even more stressful.  But having two sick children, one of which poses a constant worry when sick...now that is the epitome of stress!  Take that existing stress after a long day, add Coulby vomiting, and my nerves were shot.  It was out of nowhere.  He's sitting on the couch one second, I bring him his formula, and the next second he is throwing up.  It was like just seeing his formula made him sick.  And he was shivering.  Fully clothed, wrapped in blankets and teeth-chattering shivering!  No fever.  And still had to drink a full cup of medicated formula.

This is where I had my meltdown.  I knew he still had to get his medication.  He had just thrown up and yet I still had to be the bad guy and force him to drink!  Who wants to drink something, especially something that tastes 1,000 times worse than biting down on a stink bug (not that I know from experience with a stink bug, but just imagining it makes me gag)?  Poor Coulby.  I hate Citrullinemia always, but especially on days like this!  I hate that he can't just be sick and lay around in his pajamas and not worry about eating or drinking if he doesn't feel like doing either.  I hate that I have to force drinks and medication and food on him when his belly can't handle it!  It just plain sucks!!!  And wouldn't you know that Coulby, after an hour or so and a lot of motivational talking from me plus a few chants of, "You can do this Coulby!" from himself, drank his formula like a champ...AND THREW UP!  IT JUST.ISN'T.FAIR!!!!!!!!  My poor sweet boy!  He tried so hard to motivate himself to drink his formula, despite feeling sick to his stomach, because he knew he had to.  And after all of that, he looked at me and said, "I'm sorry I threw up, mommy."  I hugged him close and told him it was okay and that he had done a great job.  I told him how much I love him and how sorry I am that he's not feeling well.  And I held back my own tears of sadness for him and anger that he has to suffer every time he's not feeling well. 

And I do feel angry.  I cannot help it.  I know things could be worse.  I know Coulby is still home despite being sick and I should be thankful that he is not at Hopkins right now.  But when I think of how hard he tries each and every day, and especially when he's sick, to take the medication he so detests...I get mad!  I just don't know what to do.  He is sick.  He doesn't feel well.  He needs his medication.  But the medication makes him sick.  If he throws up or if he doesn't get his medication, he might end up in the hospital.  It is a vicious cycle in which I am helpless!

So please excuse my temporary meltdown.  I guess I needed to vent a little to a world where most people don't quite understand what it's like to live with Citrullinemia, or any other metabolic disorder.  Please keep Coulby in your thoughts and prayers.  Pray that he will manage this illness from the comforts of home, away from inner city Baltimore and doctors and nurses and the painful invasion of an IV.  Updates to come!         

This Family

Whew! This has truly been one hell of a week (and then some)! Coulby endured the nasty stomach virus that seems to be running rampant throughout the United States (okay, okay, the Drama Queen is coming out in me...but it has been hitting HARD in MD and surrounding states), landing him at Hopkins for 4 days! Read previous blog posts to see how that hospital stay went, and you will understand when I say we all went through hell and back, but especially Coulby.

Once our family of four was reunited at home, it was only a day before my hubby and Caroline were competing in an all-night vomit marathon, plagued by the same above-mentioned stomach virus that Coulby had. Being of weak mind and stomach when it comes to others vomiting, I swore I would be joining in if I had to keep hearing or seeing anyone else do it, so I quarantined the hubby and daughter in a room for a little over a day and focused my attention on Coulby. He bounced back from his illness and hospitalization with flying colors! Resilient little guy!

All vomiting had ceased. Finally. We washed everything and the house smelled like a bleach bomb had exploded in it. I love that smell! It reminds me of all things clean. And all things germ-free! So we thought we were in the clear...ha ha! How could I have been so naive as to think that after being exposed to such a nasty virus, I would not get it too? I mean, I think I knew I had a 99.9999% chance of ending up sick as well, but I figured if I willed it away it might just leave me alone. Fate would not be so cruel, right? WRONG!

As if we had not been through enough, I ended up sick as well. It started as a little stomachache that took on a life all its own by the middle of the night. My stomach rebelled against me, only tolerating Ginger Ale. I was not hit as hard as my poor hubby, but also did not rebound as quickly as my resilient children. I slept a whole day of my life away. A whole day!! AND managed to sleep through that night after sleeping through the whole day! If I had any catching up on sleep to do, I more than made up for it. But I survived! I am awake today, out of bed, showered, dressed, eating and drinking...back to the land of the living. Not feeling 100% better just yet, but about 99.9999% there.

And my point? Well, it is not to feel sorry for my family or myself. It is not to say, "Hey, look what we have been through. Poor us!" It is certainly not to say that we have had things any worse than some because I know someone always has it worse. What I really want to say is that this family, my family, might be dealt some punches in life. They might come fast and furious. It might feel like we will not get back up after having the wind knocked out of us. But we always do. We always bounce back. Better and stronger for all of it!

You ROCK, mommy!

I am reveling in the fact that my son actually thinks I am cool...for now. I know that very soon I will be old, uncool, out of style, boring, dorky...you get the gist. So when Coulby looked at me the other day and said, "Guess what. You ROCK, mommy!," it made me stop in my tracks to say, with as much surprise as gratitude, "Thanks, Coulby!" Coulby's exclamation surprised me because I did not know he even knew that expression, and rendered me speechless because no one has thought of me that way in F-O-R-E-V-E-R. Those days of being cool seemed to be long gone. And now my son thinks I rock! I will take it while I can.

The ironic part about it all is that I think Coulby rocks! He is such an awesome kid, and I am not just saying that because he is my son. He just rocks. Coulby has endured more, experienced more, suffered more, and overcome more than most kids his age. And he has done it all with grace. And a little bit of attitude. I give him that because, well, he has earned it.

Coulby started kindergarten in August, and as much as I hated seeing him get on the bus to ride into the deep blue germ-infested yonder, I knew he needed that. My stomach got tied up in knots knowing that he would be in school all day this school year, and therefore exposed to a full day's worth of germs instead of only a pre-k 2.5 hours' worth. But Coulby loves school. I mean absolutely loves it! I knew my fears of germs and illness could not, no, would not, get in the way of Coulby's natural progression to the next step in his education. So off he went.

No one knows what it is like to have thoughts of kids coughing without covering their mouths, or sneezing into the open air, or wiping snotty noses with their hands and then touching everything around them, swirling through the brain. Thoughts of colds and flu, especially the hyped-up H1N1 virus. That is what I think about all the time. Protecting Coulby from all of that. Ways that I can teach him to stay clean and healthy. Ways that I can teach him to avoid everyone who appears to be ill. But how can I do that? I mean without putting the poor kid in a bubble?

Despite all of my best efforts to keep germs at bay, Coulby brought home a nasty cold several weeks in to school. He made it through that like a champ. Then on Thursday morning he woke up warm to the touch. His temperature was 101.2 and he complained of a stomach ache. When I told Coulby that he had to stay home from school that day, while masking my worry that kicks in whenever Coulby gets sick, he retracted his complaints of a stomach ache and said he was fine. He actually started crying because I would not let him go to school. That is how much he loves it! (We shall see if that lasts into the next several years when he is bringing home school work and studying for tests.) Coulby seemed to look a little more tired than usual, with puffy red rings under his eyes, but other than that, I would not have known he was sick. He was playing, talking, running around, and still had an appetite. Then I got a call. One of the kids in his class was confirmed to have H1N1. My stomach was suddenly full of butterflies.

My body went into overdrive after that phone call. Calls to the geneticist, calls to the dietitian, Internet searches on symptoms of swine flu...anything that I thought would help us get through this illness at home. And we did! Coulby had a fever for days that only broke yesterday evening, and has maintained his normal energy level during the whole thing. This has been another obstacle overcome, at home, by my brave boy.

And to this I say, "You ROCK, Coulby!"

On the mend...

Well, Coulby is doing much better now! He got through yet another illness here at home, to which I say, "YAY!!!!!" This one was a nasty cold, with a cough, major congestion, and a fever. Coulby was pretty miserable for the first few days, but seems to be getting back to normal now. The fact that he is playing with trains again is a sure sign that he is feeling better. Coulby is ALL about trains!

Shortly after Coulby got sick, so did Caroline. Same thing, but she managed it better than her big bro. She still has a cough and snotty nose, but is fine. Both my husband and I ended up with it, too. I cannot even breath out of my nose right now and need to blow my nose every second of the day. It is more annoying than anything! And I cannot tell you how many boxes of Kleenex we have emptied in the last week.

During all of this, I went away for a much needed weekend away to scrapbook! I felt a little reluctant to leave with Coulby just getting over an illness and Caroline starting with it, but I was assured everything would be under control at home without me. And it was. I checked in about ten million times, but everyone got through the weekend without a hitch. And I finally got myself caught up on some of my scrapbooking. I will post some of my completed pages in the next few days.

Thank you all for praying for Coulby and thinking of us while he was sick. It means a lot to have such support during difficult times.

I have posted the latest photo assignment below...BEFORE and AFTER. Mindy and I decided to use new or old photos and use software to bring them to their full potential...or try to! With Coulby being sick last week, and then going away for the weekend, I used old photos, but I hope you enjoy looking at them just the same!