If you've noticed the new grey hairs and wrinkles I've acquired in the last two years, its not old age. I'm a few months shy of 29! Nope, I've got one word for you - Bennett.
Worry. Bennett. Worry. I'm starting to think they are synonyms.
He's happy. He's progressing. He's relatively healthy. But still, I worry. I can't help it. I'm his mommy.
Having a child with special medical needs sure takes a lot of you. I should be grateful, because I know others face much bigger challenges than we do. But we deal with a lot.
I keep a medical journal for Bennett. Here is what's been going on lately:
12/30 - Bennett Synagis shot.
1/7 - Bennett appointment with pulmonologist - she's not a happy doc, ordered sweat test and another increase in calories.
1/25 - Sweat test for cystic fibrosis at Childrens National. Negative!!!
1/29 - Bennett Synagis shot. Nurse Prac worried because no weight gain in past 3 months. Conference call Monday morning, most likely a GI an Endo consult.
2/1 - Speech therapy - still delayed but progressing along well at his own pace.
2/12 - Bennett starts wheezing in the morning, but nightfall he's back on oral steroids.
2/13 - Bennett barely made it through the night without a trip to the ER and that is WITH the steroids - take him to the Pediatrician and she gives him Atrovent which opens him right now. He has a sneaky ear infection, so she prescribes him antibiotics for that too. Phew - we escaped the dreaded hospital again! Score!
2/16 - Weaned Bennett off the oral steroids.
2/23 - Took Bennett to the Pediatric Gastroenterology Clinic at Johns Hopkins. The doc who saw him said we're doing everything right - adding in extra calories and fats and trying to eek in every calorie we can. So, he ordered a TON of bloodwork to try to see what the heck is causing Bennett's Failure to Thrive. Plebotomists were incompetent and dug in his arm for several minutes before determining they couldn't tap a vein. So I have to take him back. Lovely.
Everyday, we spend 40 minutes giving him breathing treatments. Everyday, I measure out his medications. Everyday, I mentally tally up how many calories he's eaten.
Its so much. Unrelenting. I thought that if I make it far enough along in my pregnancy, he'd be fine! I made it 30 weeks! Six weeks past my complete rupture and nine weeks past the point when I started leaking fluid. Everything I've read says 30-weekers tend to have very few long-term medical issues! Most outgrow the effects of prematurity by age two.
Not Bennett. Like my friend W said - they don't have a growth chart for Bennett's special circumstances. Nor is there a "What to Expect." I never know what to expect. When I go in expecting great news - I am faced with disappointment. When I go in with a laundry list of worries, the docs gush about how great he is doing. I never know.
Screw law school. I should have gone to medical school. Maybe then I'd feel more qualified to be a mother to this precious little miracle.
Its a darn good thing he's worth it! Worth every bit of it.On a side note - Bennett went poopy in the potty for the first time today!!!! GO BENNETT!!!
he certainly is worth it :-) and you're doing a great job of juggling everything. Frankly, you make it look effortless and I am in awe of that.
ReplyDeletecongrats on the poop, too. Are you potty training or was this just a happy accident?
Becca - I haven't been PTing AT ALL. I assumed he would be really tough to PT because 1. Carter was a BREEZE, seriously the easiest, and there is no way I'd be so lucky again, and 2. Bennett seemed to have zero awareness of his body functions and is not very verbal yet.
ReplyDeleteBut Sunday night, he seemed interested in sitting on the potty, so I whipped out the Diego potty topper we had from Carter, and he sat there for a few minutes oohing and ahhing at the pics on the seat, lol. Then he got down and went on his merry way. Last night, he was in the bathtub, and suddenly climbed out and was opening the potty, so I put him on it again and lo and behold he pooped!!! I guess he felt like he needed to go and didn't want to poop in the tub again since Carter majorly flipped out last time he did that (I bathe them together) and had already but 2 and 2 together to figure out that poop goes in the potty!! I seriously stunned that 1. he realized he needed to poop, 2. he knew that poop went in the potty, and 3. he was able to communicate that to me!!! This kid is way more advanced than I give him credit for!!!
Now pee...I think that will be a whole 'nother story, lol!!!