Last year at this time, William had recently completed his second round of chemo to shrink a massive neuroblastoma tumor consuming his abdomen. Today, at 20-months old, he's a busy, very active, generally content and flourishing toddler. He is literally learning new things everyday - he's definitely in a growth burst!
These days, William is in to everything! He totes around the same stool Nicholas used to travel the house with (and still does). He plops it wherever he wishes and usually gets into trouble of some sort. The other day, he was wearing a hoodie. After splashing at the sink a bit, I told him to take off his hoodie so it wouldn't get wet. He carefully unzipped it, tossed it to the floor and said, "Hunhhh!" (his version of "ta-da!)
I captured his expression of full pride!
...and then he was right back to splashing in the dish water!
Will just loves his 4-Wheeler Christmas gift from Grammy and Poppie. Daddy has been cringing with William's driving skills in the house, mainly his lack of steering skills (minor problem). Just within the past few days, William has learned to drive, make his usual crash, then get off the vehicle, re-adjust and continue on his way. Good job, buddy!
William is communicating more and more everyday. While in the hospital last week, he thoroughly impressed the staff with his incredible awareness and knowledge of medical things. He knows exactly what to do for blood pressure checks, he waits for the cuff to deflate and then peels off the velcro, he can thread a thermometer sleeve onto the narrow thermometer, he places the thermometer under his own arm (and will even take Mommy's temp, but he prefers a cleavage reading), William puts a stethoscope to his own heart, he finds an alcohol swab and attempts to clean his central line claves and can operate the hospital remote control incredibly well, including knowing how to call the nurse, cancel the nurse call at the wall display and can operate the lights and tv on request.
Since our discharge earlier this week, William continues to be on IV antibiotics (Zosyn) and will be through the end of January. This means we have to run his antibiotics every 8 hours, every day, around the clock. He is tolerating all this accessing very well and is even voluntarily laying down for us when we approach him with the supplies. He's making attempts to say many of the items we use on a daily basis, such as "tape," "flush" and saying "ga" for "go" when I turn on the pumps.
William now loves having books read to him. He shares many of Nicholas' old favorites, including Curious George (especially George Rides), Wheels on the Bus and Karen Katz books. Will loves being sung to and is now making recognizable efforts to sing his favorites, Twinkle Twinkle Little Star, Happy Birthday (and blows out his fingers at the end) and I Love You, You Love Me. He has started to initiate the "where is your...." game. As he lays for a diaper change, he starts making exaggerated gestures and pointing at his favorite body parts until I respond by asking him, "where is your..." He gets all giddy when he's asked where are his eyes, nose, teeth, tongue, toes, socks, pants, fingers, thumbs, hair...each playing of the games just makes him glow!
William gives the best kisses! He is very attentive to greet everyone with a little wave, an adorable smirk and a blown kiss at departure.
This boy is so lovable and social. He follows his big brother around and just takes in everything Nicholas does. You can already see the deep admiration he has for Nicholas, it just melts my heart. On the flip side, Nicholas is already complaining, "William, leave me alone!... I'm playing with this!...Go away! You're too little for my toys!"
Medically speaking, William continues to be a very complex case and he seems to baffle doctor after doctor. He is celebrating 11 months of being cancer-free, but remains ever-so medically fragile due to his complex gastrointestinal problems. William remains fully dependent on all IV nutrition and hydration sources and is attached to an IV pump for 16 hours every day while at home. He is given some medications through his central line and others through his j-tube into his small intestine. William is showing more interest these days in exploring foods. Just today he ate 4 blueberry baby puffs and was interested in allowing a piece of pastrami and cookie to his lips for a quick lick. These times, are celebrated, since he can then go extended periods where he refuses any sort of food even near him.
Exhaustively, I have to report that William's sleep disturbances continue. Now at 20-months, he continues to sleep very, very little and requires extensive soothing to settle to sleep. He is still rocked to sleep for every nap and bedtime. This is an exhausting, daunting task, each and every night. It can sometimes take a half hour or up to 2 hours if he gets his "second wind" after a 20-minute power nap or is disturbed when I attempt to move him to his bed. In the 5 nights we have been home, I have slept all of 5 hours in my own bed. The rest of the time has been with William, in his suite in the guest room. Because it is so difficult to lower him in his crib with all his tubes in position and with him still sleeping, we now have William set-up in the middle of the queen-size bed in the guest room, with pillows surrounding him. He continues to wake multiple times a night, naps minimally (sometimes only a half hour a day) and always wants his Mama in arms reach.
All in all, William continues to amaze us all with his ability to preserve through such pain and trauma, yet be the happy, typical toddler he is. So much of what William has been through has sadly become his norm....all that he knows. Its been a difficult reality for him and for us to experience... but his smiles and love make it all worthwhile.
He truly is our miracle.
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