Thanks everyone for all the good wishes…they must have helped Nik dodge the stomach bug “bullet!” Seems he’s fine after just a couple of days of crampy and cranky bouts. I have to wonder if the change in his enteral formula has made a big difference, too. It’s got significantly less dairy and his overall GI health seems better than ever before (knock wood!). I was worried b/c the last two hospital visits (stays, really —a week each time!) have been due to a GI bug that really knocked him down. WHEW!
In any event, it’s been a relatively uneventful few days; that’s always a good thing round here!
I’ve been trying some of the tips that B gave us during the feeding eval. While I wish I could say Nik is eating like a champ, but at least he is eating a bit more and is not fighting me as much. Maybe he is more ready now? All I know is that, for the past few days at least, mealtimes have been much nicer. Still godawful long — 20-30 minutes for oral feeding followed by nearly an hour for the tube feeding then the extra 20 minutes Nik has to remain upright because of his reflux. Multiply that by at least 4 meals a day and, well, you can probably figure out why I don’t get out much on weekends except to the park or for walks with Nik! But it feels like we’re heading in the right direction…bit by bit. Or should I say bite by bite?
**************************************************************************************
We’ve been avoiding TV in our house for a while (sort of like Kristen’s house, too), but lately Nik has been getting very bored and restless with the usual toys he plays with while the tube feeding is going in. So I decided it was time to try a little distraction. Inspired by a couple of other families (here and here) who have been checking out our favorite nanny, I brought out our Mary Poppins DVD this weekend. I have to say, Nik is quite enamored of not only Mary Poppins herself but finds George Banks to be hysterically funny and laughs out loud when the penguins dance with Burt. Niksdad has even come up with his own lyrics to the “I love to laugh” song (the scene on the ceiling with Uncle Albert) which makes Nik crack up even when he’s crying!
You know the one — it goes “I love to laugh (ha ha ha ha), loud and long and clear. I love to laugh (hee hee hee hee), so everybody can hear. The more I laugh (ho ho ho ho), the more I fill with glee. The more the glee (hee hee hee hee), the more I’m a merrier me!” Nik laughs himself silly over this one! Niksdad, being the manly-man he is, has co-opted this tune for his own silly version which makes Nik positively HOWL with laughter no matter the occasion!
So, at the risk of completely destroying Niksdad’s street cred (he gave me permission!!), his version goes something like this:
I love to fart (thttt thttt thttt thttt), loud and long and clear.
I love to fart (phttt phttt phttt phttt) so everybody can smell.
The more I fart (insert sound effects), the more I fill with glee.
The more the glee (sound effects), the more I’m a pew-pew-er me!
Yep, gotta love my man! (Did I mention he’s a highly educated science-geek type? No, REALLY!)
So, there’s our dirtly little secret. Hee hee hee.
**************************************************************************************
Ok, on a more serious note, I had a wonderful experience at Nik’s school this morning. I took him early so I could try to wear him out on the playground before breakfast. Um, guess which one of us needed a nap when we were done? Right! zzzzzzzzzzzzzzzzzzzzzzzzzzz.
Oh, sorry, where was I? Right, school.
I ran into the grandparents of a little boy who’s new to Nik’s class, J. J reminds me a lot of Nik when he started school a year ago —won’t bear weight on his legs, doesn’t talk, won’t eat, cute as a button (well, he is!)… He lives with his grandparents who, from what I understand, are basically raising him and his little brother with very little involvement from the mom. I’ve seen Grandma a few times and exchanged pleasantries and encouragement about J’s progress. Today, though, I met Grandpa. The first thing Grandpa told me is that Nik is the reason J is in this school.
Huh?
Turns out when Grandpa came to tour, he was bowled over by Nik (probably literally, since he tells me he saw Nik wheeling himself about in the mobile prone stander) and the independence he saw in him. The teacher told him that Nik wouldn’t stand or walk when he first came to school. That clinched it for Grandpa. Grandpa is, apparently, a big fan of my son. I was very touched.
It meant more to me than I could possibly express at the moment he told me. See, when Nik was born, and often throughout our many, many months in the NICU, Niksdad and I said we wanted to make our experience —good, bad, scary, hopeful —count for something bigger than just our little family. It felt like God chose us to be Nik’s parents for a reason and God brought Nik to this world in the manner he did for a reason. I am not a hugely religious person but I do believe there is a reason for things that we may not always know or understand. So to know that my son —my family— is making a positive difference in the life of another child, another family… Well, it feels overwhelmingly good and like a big responsibility all at once.
I try to live and parent in ways that make me worthy of that gift. Some days I succeed more than others, but each day brings a new opportunity.
Today, life is sweet.
Lovely. Especially that last part. I got chills.
I can’t comment on the farts, though. I’m too much of a lady. I think.
Touching! Thanks so much for sharing. My husband and I have often had the conversation that each of us has a purpose, something to fulfill in this life. To think of that for our children always motivates me and inspires me. The possibilities are endless. Blessings!
Bravo to you, to Niksdad (creative genius that he is!) to J’s Grandpa, and mostly to Nik! And we may need to join the MP bandwagon…not sure if my guy is ready yet though!
Kristen…ROFL! Uh-huh, yeah, sure.
Irene, have you gotten settled in DE yet? Please touch base when youa re settled; maybe we can meet? (I promise, I’m NOT a stalker!!)
Susan, one is NEVER too young for MP! Honest. Nik’s first exposure was when he was a year old. We were in the hospital (again) for three weeks right around his birthday (well, actually from Thanksgiving until AFTER his bday) and the hospital movie system went down. Fortunately, the family resource center had lots of videos to borrow. I’ve always loved Julie Andrews so MP was a natural choice. For three days straight, Nik snoozed through most of the dialogue but always seemed to perk up when the music came on. He could’t sit up so he actually heard MP long before he saw it. Once he saw it…he was hooked! Go for it!
I am glad things are going so well. It is always nice when people like our kids. It sort of makes a parent proud. By the way I love the farting song, gives me gas just thinking of it, Just Kidding! I will have to tell my husband that song he will like it too.
Wow, I would have started to cry probably—-and now we’re all going to be big fans of J! And Nik too, but that’s too obvious—sing away! I’ve often had that feeling that, with Charlie, we’ve become part of something bigger, of a family who shares something that truely binds us, and that reaches out to touch us, whether we are looking or not.
Ah I’m so proud of your all! That’s just the kind of thing that saves me from many of my hesitations – if it doubt spit it out [the compliment that is to say!] They can have such a huge impact, so uplifting and last for ages and if you’re extra lucky they can come at a time when you can do with a little [big] boost.
Best wishes
Ah, Mary Poppins was the first movie I ever saw – I was about 4 or 5, I think. TJ loved it too when he first saw it.
You are right, IMO, about God choosing you and Niksdad for Nik, and he for you. He gives us all unique talents and gifts, some just come in different packages.