April 23, 2009

Quarterly CF Appointment

Yesterday was Samantha's quarterly appointment at the CF clinic, and it was a good one! Our last one was the big annual visit where they do chest x-rays and draw 7 vials worth of blood. What a nightmare! The other 3 preventative appointments of the year are much milder, but I always walk away feeling quite inadequate to manage this disease! Dan's last deployment I moved home because Samantha was 1 year old, and I had no idea what to expect. These last 3 months have been a daring venture for me, and I think that I am finally learning to accept, embrace, and challenge this disease.

Our ongoing weight gain battle...

Weight: 31.6 lbs
Height: 38 inches

Weight is 25th percentile. Oh, I was so bummed because we were at 30th percentile in Dec, and I'm trying so hard to make it to that 50th percentile. And I don't know if the pictures show it, but Samantha is really getting "rounder" these days. I actually groaned out loud.

Then he charted the height, and she is only 10th percentile for that! That makes 25th percentile weight much easier to swallow! It's funny because I have people tell me all the time she seems tall (and I think that too), but she's actually quite short. I think the fact that's she's just skinny (or has been in the past) makes her seem taller than she is.

My helper
Timothy was at this visit with us (first time I can remember in a long time), and that helped so much. He likes meeting new people and talking to them, and Samantha thinks he can do no wrong. She's normally not comfortable with any of the Care Team (who she's known since birth), but yesterday she was totally laughing and engaging because big brother was!

Dr. W said he had to find monkeys in her ears and mouth. She normally hates those checks, but Timothy thought it was hysterical so Sam kept saying, "Monkeys? That's silly!" We even told her the throat culture was to get one of the monkeys out! And then Timothy said, "I think monkeys are germs." Smart boy. I'll call back next week to find out if anything cultured.

Digital x-rays
Another great part of the visit was getting to see the chest x-ray from Dec (and previous years). Dr. W said you wouldn't even know these are CF lungs by just looking at the x-ray. THAT is what I want to hear! All the labs look okay from Dec. Iron is just right below normal, so we'll be staying on top of that.

Refill correction
We're keeping all meds the same, but he's fixing one refill issue we've been having. They only give me 1 inhaler of Albuterol & Flovent at a time, and he said I'm allowed to get all 3 at once to avoid delay. That will be wonderful! I'll be getting new prescriptions filled in the next couple of days, so if they don't give it to me the right way I now know what to ask for.

CF Friends
Lil' Chris also got a great report yesterday at his quarterly!
Samantha (another Samantha) had a great appt on Tuesday!


Kristina Dale Hawkins said...

aww that is all great news. Sam seems small but not really that small compared to Dillon. I am so happy she is doing well.

Julie said...

Yay, great news! People always think Seamus is tall too but he's only around the 30th percentile.

Kim said...

That is great Alicia. I am keeping your sweet girl in my prayers.

stephanie@{Olive Tree} said...

Great news. :)

Zoe Isabella said...


Yeah for good clinic visits! :) Since she is on the shorter side, did they give you her actual BMI? Thas is more what Zoe's clinic goes on....the CFF wants their CF'ers at least to have a minimum BMI of 50%. She might be there...because of the height/weight ratio.
I will pray that her cultures come back clean!!
Great job Alicia!

Alicia said...

Jada, definitely the BMI is what matters! These #s put Samantha just under the 50th for BMI. In Dec we were 30th percentile for both which put us at 55th percentile BMI-the best we had been yet in her little life! Thank you for the encouragement, and hopefully we'll just be on an upward trend from here!

Lil' Chris' Mom said...

I'm glad you had a good visit too. That's great that her big brother was a big help;)

Thank for mentioning our visit too, that was so sweet of you. I wish I had more time to catch up on your blog. I miss blogging so much:(
I'll be praying for a great weight gain for your next appt.

Stephanie's Mommy Brain said...

That's great news about her lungs! Thanks for sharing with us! I'm sorry you feel discouraged about her weight at 30th %. I remember when she wasn't even on the charts. :)

Question: Does Sam get compared on a chart with non-CF kids or on a special CF chart?

In March Ellie was 30% for weight and 10% for height. Sam's 8 months older than Ellie, I think. They are just tiny peanut girls!

Christi said...

So glad to hear that everything checked out well!

lonestar said...

Great news, glad it went well!

Jennifer said...

Thanks for posting on my blog. I just read up on yours and am glad to see that Samantha seems to be doing well with CF. Must be so hard, but thank goodness she has such a great mom to take care of her.

Sheila said...

I love hearing that Sam is doing well!!!!