Tuesday, April 15, 2014
2013 was a doozy! Our family has experienced multiple big...no...HUGE life changes in the course of a year. I got remarried to the holder of my heart and my children gained a stepfather and friend, we bought an awesome house and have put a lot of TLC into it to make it a home, and we welcomed a delightful baby boy into this crazy world! His name, traditionally spelled with a K, was altered to Cellen in keeping with the C's. I suppose I should rename my blog! Seeing Coulby and Caroline hold Cellen and meet him for the first time was simply amazing!
Having another baby almost 10 years (gasp!) after having Coulby has brought back a flood of memories, both joyful and painful. Obviously the chances of Cellen being born with Citrullinemia were drastically decreased by the fact that he and Coulby have different fathers. It did not make me feel any less anxious about the results of Cellen's newborn screening. He actually endured 3 heel pricks to conduct the newborn screen, and each time I felt butterflies in my stomach. It happened once, so why couldn't it happen again? Once you've experienced the horror of your baby being diagnosed with a UCD, you are stripped of the naive thought that becoming a parent means bringing your happy, healthy baby home and life moves on. It's unfortunate, but that is the reality. Fortunately, Cellen is happy and healthy and does not have Citrullinemia.
Every day with Cellen reminds me of the precious baby moments that I sort of lost with Coulby. I was always on high alert with him and could not really relax enough to thoroughly enjoy that time. If he took a long nap, I worried he might be sick. If he spit up, I worried he needed to go to Hopkins. If he was fussy, I worried his ammonia might be high. I've started feeding Cellen rice cereal, and it reminded me that Coulby didn't get to eat rice cereal when he began solids because it was too high in protein. If Cellen doesn't finish a bottle, or goes hours without fussing to eat, I don't even think twice about it. With Coulby I felt as if all I ever did was force bottles or food on him. He missed out on having relaxed parents as much as we missed out on what most people take for granted in the ease of normal tasks and routines of raising their babies.
I know it sounds like Debbie Downer is blogging, and I promise she's done saying her part. The awesome thing has been remembering all of those challenges from Coulby's childhood and seeing him now! I think the 2013-2014 school year has been his best yet. He's matured in his social skills, his focus, and his general outlook about school. He is finding joy in reading and pride in learning. Coulby enjoys Science and Social Studies. He still grumbles about having to sit down and do homework, but he does it. He, like most young boys, likes playing video games. His new fixation is Minecraft, although for the life of me I cannot figure out why! He also loves music. We spend most car rides with the radio turned up, singing songs while Coulby plays the air guitar.
A huge milestone for Coulby was when he stopped drinking his formula with powdered meds and started taking Arginine pills and Ravicti. I cannot tell you how many countless hours were spent trying to get Coulby to drink that PFD/Arginine/Buphenyl concoction that he so despised. It was stressful and unpleasant and the stuff tasted terrible! I am sure (although I have no proof of this) that the combo altered Coulby's tastebuds. He has been more willing to try new foods, and some of his current favorites are Cheerios, mashed potatoes, garlic bread and broccoli. Medication times are a breeze, as Coulby swallows 1 pill and gets a syringe full of Ravicti, each 3 times a day. He's come a long way since those days of having bottles and food forced on him. My baby is growing up! In fact, he'll be 10 on the 25th of this month, which totally makes me feel old!
As for Coulby's health (and I almost hesitate to say it so as not to jinx it), he's had a good, long stretch of no hospitalizations. That is always a blessing! His Hopkins appointments have been extended to about every 6 weeks or so (woo hoo!!). He has managed several colds and such from home without difficulty. Coulby is simply amazing and one awesome little boy!
So that's our year in review! I simply cannot include every milestone and noteworthy event in one blog post after being absent since January 2013, but I think I covered some significant ones. What's most important is that Coulby is happy, healthy, sassy, growing, and always my miracle!
Thursday, January 17, 2013
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!
Thursday, April 7, 2011
My mind was wandering the other day, as it often does, and I got to thinking about all of the people I have met or crossed paths with at different points in my life. Some I have formed close friendships with and we will forever be connected. Some became mere acquaintances. And then there are those with whom I have lost touch, re-connected, and either lost touch with again or formed steadfast connections. Funny how that works sometimes. Which brings me back to the initial "people are funny" statement. You think you know who will be the one person standing next to you through anything, and I mean ANYTHING in life: highs and lows, celebrating and grieving, moments of glory and shame, times of clarity and uncertainty. The one who will accept you for just what you are, no matter what. The one you could call in the middle of the night and know he/she will answer without irritability. That person who will take your hand when no one else will. But you never really know until your friends, family, acquaintances, co-workers, neighbors...you get the point...are put to the test. Because people are funny like that. And they will surprise you.
I speak about people in general, but more specifically, about people in my life in relation to being a parent of a child with a UCD. This encompasses those I knew before, and met as a result of, Coulby's birth and diagnosis of Citrullinemia. I can tell you that in the days of hell following Coulby's initial hospitalization at Johns Hopkins, I was surprised over and over again. Surprised by the outpouring of support; phone calls, cards, visitors, meals. Just the genuine care and concern that people had. But mostly surprised by who reached out. There were those that I knew, and always had known, would be there during tough times. But it was the people whom I would have never expected to be there that blew me away.
Human nature is to set ourselves up for disappointment. To put expectations on ourselves or someone else that are unrealistic or unattainable. In doing so, I was disappointed by several people in my life who were not there during such a scary, traumatic, stressful and helpless point in my life. But it is also human nature to judge, unfairly or otherwise. Judging sets us up for disappointment as well, but in ourselves and not others. This brings back memories of a woman I used to work with. She was gruff and seasoned in her job, which made her a bit of a know-it-all. Well, in my opinion she was a know-it-all, which is a judgment in and of itself. I was young and she always made sure I knew that she was far older and therefore wiser than myself. It was annoying. At that time in my life, I was almost always the youngest in the office, and I heard about it: "When I was your age (fill in the blank)," "I'm old enough to be your mother," "That was long before your time, I'm sure." Anyway, this woman was not my favorite person. But do you know who was one of the first people to call when Coulby was hospitalized? Yup...that annoying, know-it-all co-worker of mine! I NEVER would have expected her to call. I mean NEVER. It was shocking. And humbling. So much so that I remember it to this day. I will remember it always.
In this world of technology, places like Facebook can link us to all of the people we have ever met, or even come into contact with, in our lives. I have met some phenomenal people online. Other UCD families who share a story similar to my own and know exactly what it means to have those people you know you can count on. When these disorders threaten our children and life gets scary and crazy and often seems unfair, they are the ones who help us through it. I suppose that really goes for every facet of life, but especially a UCD life.
My hope for my children is that they have an abundance of people, in addition to myself, who will stand beside them through anything. I hope they form those steadfast friendships young and grow to appreciate the value of such. I hope that they, too, can be that to others. When I look beside me, I know who I will see. Do you? The people you expect to be there might disappoint you. Don't discredit the know-it-all co-worker. Expect the unexpected, because people are funny...
Tuesday, February 22, 2011
So many months have passed between posts that it is difficult to even know where to begin. Life has changed in so many ways that it is almost unrecognizable to last year's version. And amazingly, among all of this change, one thing has remained the same: Coulby. Sure, his face has matured, he has lost some teeth along the way, he is a little taller and starting to read now and refining his Wii skills, but he is still the same miracle that he always has been. He still amazes me each and every day, as I watch him grow and mature into his future self. And he is still kicking Citrullinemia's a** and defying all odds. That's my boy!
Coulby has had his fair share of illness since the start of school, with numerous stomach bugs, colds and other assorted viruses, and (*knock on wood*) has been home to get through them all. My little boy, who has been stuck with needles and pumped full of fluids and meds and pushed to meet daily protein and calorie requirements every single day of his life (except for his first three days in this crazy world) and whose doctors were only "cautiously optimistic" at diagnosis, is...well...thriving; living! And living a pretty normal life at that. I cannot help but be amazed every time I reflect on Coulby's life. It is difficult, and downright painful, to remember the days of rushing Coulby to Hopkins at the first possible sign of illness. If he so much as hiccuped and spit up as an infant, he was whisked off to the ER to make sure some illness was not threatening to elevate his ammonia. And in those early days, when his immune system was not as strong as it has become, he did spend many sleepless nights hooked up to IV's, battling the body's natural defenses against illness that, ironically, threatened his life. Illness is still a threat and nothing to be taken lightly, but now I know Coulby can and has taken on these battles at home. And that is ultimately one thing every parent of a child with a UCD hopes for.
Coulby is strong. He takes on life without trepidation. Lives life to the fullest and accepts his disorder and all that comes with it, even when it draws him away from being carefree and innocent. I admire him most in those moments. When he has to stop playing, or take time away from fun being had by his peers, to drink formula or eat precisely weighed out food to meet his daily needs. Because it is then that I know my free-spirited Coulby wants to just do his kid thing, but switches gears just long enough to deal with the reality of Citrullinemia as a part of who he is. For those who do not witness this in their own child on a daily basis, it is hard to understand why it is so admirable. But it is. Truly.
I wish I could draw upon even a quarter of Coulby's amazing self. I know I would be better for it. His strength. His steadfast determination. His delight in life. His unreserved, loving nature. I do my best as an imperfect adult scarred by reality to teach not only Coulby, but both of my children, all of the knowledge I have to offer them. But I have found that my children teach me far more than I ever thought possible when I stop and take time to observe to them. To listen to them. To admire them!
Monday, September 13, 2010
Coulby started first grade at the end of August and I am lamenting his infancy. The adjustment to knowing my oldest is now a first grader has been way more difficult for me than sending him off to either preschool or Kindergarten. Why? Well, look at him! He is a little man! I swear he grows right before my eyes!
I guess I just never thought this day would sneak up on me so quickly. There were times when Coulby was a baby that I was not even sure I would send him to public school. The thought of exposing him to so many illnesses terrified me. My plan was to protect Coulby's health and keep my sanity intact by secluding him from any and all threats. I would have done him such a huge injustice in doing so. He loves school. It suits him.
Now I repeat the advice given to me because my baby is growing up way too quickly for my liking. And every time I pass it along I want to roll my eyes because I know how it sounds; that it is meaningless to the sleep-deprived, frazzled mother with a baby on her hip. But I say them anyway because eventually, for all of the mama's out there, these words ring true.