My poor kid. First he’s too sick to celebrate his birthday, and then he’s too sick to be home for Thanksgiving.
I hope we’re not starting a trend here.
Birthday cards from some of Parker’s favorite buddies!
We’ve had years when between Thanksgiving and Christmas we’ve spent more time inpatient than we have at home. Not our best memories.
We’re home now. Parker is starting to look a little better. He’s very tired and wants mostly to just sit and be held. So different from the kid he usually is. It makes me think of the years when all we did was hang out in the safe room and rock while reading story after story.
I hereby promise to never again wish my little tornado would slow down. Great energy shows that he’s healthy and happy. Last week reminded me to be thankful for each and every single healthy day. It’s amazing that after all Parker’s been through that I could even begin to take the good days for granted, isn’t it? It’s time to offer up more gratitude to my Father in Heaven for how far this kid has come.
A picture drawn by one of Parker’s sweet peeps! Notice the Elmo?
It’s going to take some time, but Parker will get healthy again. My worry is that once he has been so weakened by what he’s just been through, he’ll be vulnerable to every other bit of yuck making the rounds. I still haven’t tried to put him back on his blenderized diet yet. The canned stuff digests a lot easier, but I don’t believe it offers him the optimal nutritional of fresh fruits and veggies. Perhaps getting him back on his blenderized feeds will help put some of the almost two pounds that he’s lost back on.
I’m thinking it may be a truly looong winter.
Remember my post from yesterday? How to tell if you are a Special Needs Mama? Well, I’d like to add a new line.
You know you are the parent of a medically fragile kid with special needs when the crisper in your fridge is full of few thousand dollars of inhaled antibiotic instead of, you know…. food.
heh.
Thank you so much for the prayers and words of love and support as we made our way through last week. I’m not going to lie. It sometimes takes a village to keep this Mama from wanting to throw herself off a cliff. Those prayers make all the difference.
xoxo
PS: Please take a moment to click on our sponsor links! Advertising spots help to cover our Brave Hero’s out of pocket costs. Thanks!
Twitter: kadiera
Nov 28, 11
You know you are the parent of a medically fragile kid with special needs when the crisper in your fridge is full of few thousand dollars of inhaled antibiotic instead of, you know, food.
Ours wasn’t antibiotics, it was inhaled enzymes….but yeah. And since the baby is getting the same mediciation in the PICU right now, it may be full of meds again soon
kadiera recently posted..Worlds Apart
Inhaled enzymes? I’ve never heard of these. What kind of enzymes and in relationship to what? (If you don’t mind sharing……)
xoxo
Twitter: kadiera
Nov 30, 11
The medication is called Pulmozyme. It’s an inhaled enzyme that helps break up mucous. It’s missing in CF patients, and while neither of my kids have CF, it can be used to treat atelectasis (pockets where the small airways in the lungs are collapsing, usually due to mucous plugs)….and that we had/have in spades.
The stuff is stupidly expensive – I think the pharmacy price worked out to $75 a dose, but it sure works. Originally A was plugging a trach every 3 days on average. The hospital doesn’t wash & reuse trachs, so he was just killing their stash. With it, we could go a week between planned trach changes
kadiera recently posted..Little Bits and Bobs
Our fridge holds those same boxes of meds. What formula do you use with parker when he is ill and not on the blended diet? Junior has horrible stomach pain if on formula so we kept him on the blended diet when ill just went to easily digestible, bland foods.
Lots of prayers for your brave hero, hope he is back to his happy, active self very soon.
Heidi recently posted..Decorating for Christmas
Heidi, we just use the standard g-tube variety of Complete. Nothing fancy. I’m starting to add Florastor back into his diet as well. I used to always do it when Parker wore an ostomy bag, but quit because it is soooo expensive. It runs us about $50.00 a month to keep him on the amount recommended by his GI.
Twitter: therextras
Nov 29, 11
Praying for Parker, and Tammy!
Barbara recently posted..I’m a little nervous sharing this information.
It’s way better to get his tummy over the inflammation before you add too much hard to digest stuff like vegetables. If you proceed with caution, you’ll be rewarded with a quicker tummy recovery. So many people try to puch too much too fast and actually lose ground. I’d give it at least 2 weeks.
Glad you’re home and recovering. Cold/ flu/ virus season just bites.