Thursday, April 19, 2012
Sweet Baby Jayce...
It's been a while since my last letter, mostly because we've been busy being a family of four.
It's great to have you home!
You enjoy resting in your bouncy seat, which is strategically placed on our kitchen counter because of your brother's constant desire to be next to you. You are "over-exercised" by your crazy mother who insists on plenty of tummy time and 'floor' time each day (not to mention the times I'm moving your arms and legs in aerobic motion). You eat like a little champ, between 4~5 ounces every 3ish hours (sometimes you give me four hours at night, thank GOD!), which has resulted in amazing weight gain over the last 5 1/2 weeks. You weigh 8lbs 9oz. A regular ol' beefcake to us!
You've kept us busy since we've brought you home. You've had weekly appointments with your 'regular' doctor to check your weight gain, head circumfrence, and blood count. Your medication has done a number on your red blood cells and you've been battling anemia for weeks, not to mention a weakend immune system. Here's a picture of you after one of those blood draws. Gosh, you're tough!
Unfortunately, you will continue to have weekly lab visits... my poor, baby boy.
You've also visited the neoro-surgeon, urology, audiology, and your new infectious desease doctor. Next week, you'll be visited by your first Occupational Therapist at home, have your first MRI to check that darn brain bleed, have another hearing test, and have your 2 month check-up, which means immunizations. Yep. We'll just chalk next week up as the yuckiest one yet. You'll finally have a week off and then to optometry we go... that one should be a piece of cake though, we know you can see!!! You're THE most alert baby I've ever witnessed.
Have I told you lately how amazingly strong you are? You are itty-bitty and oh, so strong. You've experienced more in your precious, short life than anyone should ever have to face.
We have learned a little from all of these appointments. Not much because no one can really predict what this virus is doing to your body and brain, but we've learned some. Your infectious desease doctor considers your case "mild". I hold on so tightly to this comment. He says you've got "excellent" muscle tone and that you're doing everything you should be right now.
The other piece of information we received just this past Tuesday, April 17 is that you are severely to profoundly deaf. You endured a three hour test that confirmed your Daddy and Mommy's predictions that you cannot hear. This news was not all that surprising to us, but it's still hard, Jayce. I know you know no different, but I sure do wish you could hear me talking to you and singing to you and especially hear your brother saying "Hi Nayce" every time he lays his eyes on you.
The only good news about your hearing loss is that it's news. Something to grasp in this horrible, horrible time of uncertainty. Now we know. We don't have to go every few months for the next 5 years and think, "is this the day they will tell us you're deaf?" Now that we know, we can have a plan. You have one more test next week to determine what interventions we will begin. You will probably be fitted for your first hearing aids in a few months (if not before) and they've already talked to us about cochlear implants around 12 months of age, if all goes well.
With all of the 'possibilities' looming and with everything we've learned about this virus, the fact that you cannot hear is nothing. Nothing in the grand scheme of things. Totally do-able. Completely fine. All we can do now is hope and pray that this is it. You will run and play and get dirty and fight with your brother and most of all know true happiness and love. That is my wish for you my sweet, little fighter baby.
As the months go on, we'll continue to track your progress, still wondering and worrying each day that all is well. Please, please keep fighting, Jayce. You're stronger than me. You're braver than me, but I know that you are and will continue to make me a better person. You will make everyone you meet better. More compassionate. More caring. More patient. More loving.
Until next time...
Lots of love,
at 6:53 PM