2012 Spring Clinic

Another CF Mama shared this blog. It is very well written. 

And I agree almost totally. 

Napping in the recliner

picnic blanket at the park

We went to the CF clinic today.  But before we got there, we had to make our traditional stop at McDonald's for a chicken nugget happy meal. I'm happy to say she ate every last bite, plus a small fry. She might have eaten a medium if I'd gave her one.

Of course the staff at the clinic comments that we have McDonald's again even if they don't know it's always the same meal. Yup, it's tradition now.  It's also how I bribed her to get in the car on time today.  Even if we didn't quite leave on time. Oops.

I took my list of questions and even put most of them on the questionnaire.  I really prefer asking orally so there is less record of my sometimes silly sounding questions.

Height 107.6 cm / 42 inches  - she grew about 3/4 of an inch
Weight 16.9 kg / 37.2 lbs - she lost about 1/2 a pound

Or she lost around 2 pounds depending on which measurement from last time you believe.  Her chart said 37.8 lbs and 18kg those are NOT equal.  The nurse spent a lot of time working on the conversions and trying to figure out which one is the right one.  She finally decided Victoria lost 2 lbs since February visit. When the doctor came in and looked at her chart, he said she lost about half a pound.

Either could be true, but I agree with the doctor.

checking out the finches at the CF clinic

 The doctor seemed relaxed and not worried about her weight loss.  She's still above the 50% line. I was kinda surprised he didn't push for periactin or anything.  At one point he asked 'She's on periactin isn't she?'. No. And I reminded him that we had tried it for 3 or 6 months when she was a toddler.  It stopped working and when she stopped taking it her appetite shrank more and it took 6 months to get her appetite back to what it was before. He mused that that was unusual.

He's playing dietician too since our dietician is out of the country.  He said she should be aiming for 1670 - 2000 calories a day. We should aim for closer to 2000 since she's having some weight loss.   That's been our goal for quite a while.  He did remind me that at this age her weight gain is a lot less than in the past. We used to aim for gaining half a pound every month.   He confirmed that her eating habits are pretty typical for the age.  Eat a lot for 1-3 days then eat next to nothing for 1-3 days. He reminded me not to make it a battle. Another reminder to let her lead and not sweat it. I'm much better about it than I used to be.

And of course, right after we get the enzymes dispensed correctly we're adding an extra one for any meals/snacks that are super fatty. So if we get in to the 21g+ of fat for a meal then we should give an extra enzyme. It's been a year or more since we changed her dose.  And she's about middle for dosing based on her weight instead of near maximum. Though when looking at her med list, he said he thought we had the dosing backwards.  I had to explain again that her snacks are generally higher in fat than her meals. Meals are relatively low-fat and the only way I get the fat and calories packed on is by pouring melted butter on it.  1 tablespoon covers her plate.  That's 11g of fat.  So we'd do 3 or 4 enzymes if she eats all of it.  Mostly she doesn't eat it all so it's 3 enzymes.  I get 18g+ at snack time with heavy cream, milk, and a snack.  But the cream and milk are where the calories are most of the time.  Tonight when she had her chocolate milk and box of Pringles I gave her 7 enzymes.

I finally asked - does she have asthma or doesn't she?  He had to go back over her history and why we were treating her for asthma with flovent.  He said we could stop using the flovent and see what happens.  He said the summer is a good time to try it out.  We should know in about a week if that dry cough comes back.  If it does, it's back on the flovent.  If it doesn't, yay, one less medication!

I signed her up for a research study.  Not a drug trial, but more of an observational study.  They're trying to find indicators of liver disease. Not an uncommon complication of Cystic Fibrosis.  So they want to track kids with healthy livers for up to 5 years.  They'll add blood draws when she has annual labs so there's no extra sticks, we hope.  And they'll do at least one ultrasound of her liver / abdomen which could take over an hour to complete. Longer if she doesn't hold still.  We'll schedule that at the next visit.  We'll see from there.

After we finished clinic where she was literally bouncing off the walls, chairs, exam table, researcher (who was really great with her) etc, we went to visit my nephew who broke his arm.  He did such a bang up job this time he had to have it set surgically.  I wasn't sure what room he was in so I stopped to ask at information.  (Turns out it was 2 doors down from where she stayed in July 2011) They couldn't find him even though he hadn't been discharged.  Glad we didn't make a special trip.  She sent us up to the surgical waiting room. No, we don't need directions.  I remember exactly where it was.  But my nephew's mom wasn't in the waiting room.  But I remember what we did during Victoria's surgery.  Let's get something to eat and try not to worry about what's going on upstairs.  So I took Victoria to the cafeteria to check.  There she was right by the door. We sat down and kept her company while she ate.  It was a nice visit.  She appreciated the company/distraction. We were about to take a walk when the nurse called to say they were finished so come up and talk to the surgeon. I commented that it was finished right on their time schedule so everything must have gone just fine.  The waiting room had one other family and the doctor was talking to them.  Victoria was being loud so we got dirty looks.  I moved her away to play with something else and told her to be quiet while we waited. She was quiet and not disruptive after the initial bout.  But still this lady told us to be quiet they were talking about a sick kid. What do you think we were in the surgical waiting room for our health? But from what we could overhear, yeah, we were in there for our health in comparison. She'd just had major heart surgery and the doctor didn't fully close her back up.  They were waiting to do that another day. And then that lady went over and moved Victoria away from the toy and told her to wait to play and be quiet. Luckily Victoria did not protest or wail. Yet she was already quiet at the time. She wanted her to hold still too? I think she went overboard moving Victoria and asking Victoria not to move. I'll just chalk it up to the stress. 
The doctor confirmed all went well. But he'll need careful follow up because of the location of the break at the growth plate. (My nephew basically lopped the end of the bone off.)  Not to mention the pin in his arm.  With luck, next week the bones will still be in the right places and they'll remove the pin. For now the doctor said he couldn't be happier with the placement.  In recovery they gave him more morphine, toradol, and another pain med to go with the zofran and antibiotic. He was pretty loopy when he was wheeled into the room.  I did manage to get a couple of smiles out of him before we left. Such good trooper.  

He says he won't jump off the top of the ladder to the slide again.  That's important.
His mom said she'd talk to his pediatrician about checking his calcium and vitamin D levels since this was his 3 broken arm in 5 years. The ER doctor just brushed it off saying 'He's a boy'. I pray for my nephew's speedy healing.

The weekend is already looking busy.  But I'm all ready for a trip to The Dollar Tree because of this blog- Growing a Jeweled Rose. Lots of messy sensory ideas much like Play at Home Mom. I often get inspired by these two blogs and then overwhelmed. But the Dollar Tree list makes it less daunting.