Tuesday, April 15, 2014

Year+ In Review

I'm ashamed to say it's been well over a year since my last post. There is really no excuse for it other than life is super busy. With so much time lost, this is a condensed recap of the last year and then some.  Coulby really deserves more of my time dedicated to his story, and not only during rough patches.  Knock on wood, but part of the reason for my year+ long hiatus has also been because Coulby has had one hell of a healthy streak (yay)!

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!