Monday, February 23, 2015

Week 79: Paradise

We just returned to Madison after a full week in Kailua, Hawaii.  It was amazing.  And, after an epic journey including a red eye flight to get back here, I don't have a lot of words left in me to describe just how wonderful this trip was--so, I'll let the photos speak for themselves!

Tuesday, February 17, 2015

Week 78: Aloha

Greetings from Oahu!  Miraculously we survived our journey here.  We left home at around 5:30 Friday evening and took a taxi to the bus stop,  followed by a bus to Chicago.   Lemon thought that the one-two combination of two of his favorite vehicles was the thrill of a lifetime,  but little did he know what was in store.  After a quick night's rest at the airport hotel at O'Hare, we headed into the terminal to catch our flight to Honolulu. 

We boarded the plane uneventfully, and to our great dismay, things remained highly uneventful for the next two hours.   And by uneventful,  I mean that we remained on the ground within sight of our gate for that entire time,  as first we had to wait for a plane behind us to get deiced,  and then we had to taxi over to the deicing area ourselves and wait for a while only for the crew to ultimately decided that we didn't need to be deiced.   Papa Bear and I looked jealously at our neighbors who were napping and watching movies as we did our best to keep Lemon occupied during the delay.  I invented a new song entitled "She will be flying Delta when she comes" that Lemon seemed to find quite amusing.

Once we finally got airborne,  the flight was surprisingly ok.  We made and consumed a few Scandishakes,  did PT,  read a few books many times, thoroughly discussed the pictures in the in flight magazine,  and walked laps of the cabin.   With our sanity fairly intact, we arrived in Honolulu, where we were met by our long lost friend Andrew,  who calls this beautiful speck of land in the middle of the Pacific home.   


He drove us over to our rental house in Kailua,  where we were soon joined by his wife Sarah and their kids.  In spite of a 4 hour time difference,  Lemon was so excited to see them that he got a second wind and hung on until pretty late in the evening.   He did of course get up at 4 am, but sunrise here is quite lovely.  And, our house is within sight (and a very short walk) of a beach so we have been going down there first thing in the morning to visit with the early morning dog walkers and surfers.

We were joined late Saturday night by another set of long lost friends,  Shelly and Jeffrey and their two boys, who are sharing the house with us for the week.   We've been having a blast so far, with the three little guys running around in a loosely configured swarm.  Shelly, Andrew and I all met in grad school, and we can't help but marvel at how long ago and how far away that time in our lives feels.  We've added three spouses and five kids to the mix since then, but the old bonds are still strong and we're looking forward to another week together in this beautiful place.

Monday, February 9, 2015

Week 77: A little less, a little more

Week one of our new diet regimen is now behind us, and the results are looking very promising.  Last week, we started giving Lemon a probiotic and glutathione, in the hopes that either or both would improve his digestion and allow him to gain more weight.  For those of you who may want to try this at home, we're using Trunature probiotics that we got at Costco, and we're giving him the full contents of one capsule in applesauce with breakfast (yum!).  We're also giving him a total of 500mg/day of glutathione.  We sprang for the more expensive GNC brand glutathione in the hopes that perhaps the name brand would translate into the white powder in the capsules actually being what it claimed to be.  We give him about half the contents of one capsule on applesauce with breakfast and dinner.  His next weigh-in isn't until the beginning of next month, so we won't have any hard data until then, but he looks quite a bit more filled out, even after just a week.  Perhaps more tellingly, he went from going "poo-poo" six times a day to twice.  So, there's some hope that he's absorbing more of his food.

We're still waiting on the new Pertzye enzymes.  It turns out that getting a free trial of the enzymes isn't quite as simple as one might imagine, but after a few emails with the doctor's office and a few phone calls with the company that makes them, I believe we're making progress.  The last hurdle (I think) is that the company that makes the enzymes doesn't work with any of our local brick-and-mortar pharmacies, they only work with mail order pharmacies.  And, the enzymes are temperature sensitive, and we live in Wisconsin, and it's winter...umm...yeah.  So, I think after a few more phonecalls to "coordinate delivery" as they put it, maybe we'll receive something.  At least they're sending us a 21 day supply, so we'll really get to see if they work for us or not.  And, if they do, I guess we can look forward to "coordinating delivery" on a monthly basis. 

One other thing we're trying with Lemon starting this week is to try and get him to drink one Scandishake per day.  Some how, through the wonders of medical food chemistry, it is possible to cram 580 calories into one 8-ounce cup of liquid.  We had one as a free sample and Lemon sucked it right down--they definitely taste way better than Pediasure, which he won't touch.  So, if we can get those extra 580 calories into him every day, that should help a lot with weight gain as well.

We still don't really know if any of the above will do anything, but I feel very hopeful right now, and I like that we're at least trying lots of new things, not just staying stuck in the same routines that have stopped working.  I'm very grateful to our clinic for helping us to explore all these alternatives before making more serious changes to Lemon's medications, like using a stronger acid reducer or an appetite stimulant.

In the mean time, we're having some fun around town before leaving on Friday for our big pre-Lime trip to Hawaii.  We're really looking forward to a vacation.  I'm definitely apprehensive about a 9.5 hour non-stop flight during the day with a toddler, but I have to imagine it will be worth it (right?).


Monday, February 2, 2015

Week 76: Recalibration

On Friday we had another checkup at the CF clinic.  We were there for over two hours, due in no small part to the fact that everyone who came into our exam room was so floored by Lemon's vocabulary that they wanted to stick around and see what else they could get him to say.  There's certainly no doubt that his intellectual development is on track.  If only we could say the same about his weight gain.  Here's how things look:
Basically what you can see is that for most of the time we've been in Madison, Lemon has been bouncing around the 10th percentile for weight.  He's dipped down towards the 5th percentile a few times (usually because of illness), but always managed to bounce back.  Our last three measurements, representing the last few months, have all been below the 10th percentile, and he basically didn't gain any weight at all in the last 8 weeks.  So, it's time to recalibrate.

We had a long talk with the nutritionist, who basically feels like we are doing all the right things in terms of his diet, and that with the number of calories that he's taking in, he should at least be gaining a little.  That, combined with the fact that he has the bowel habits of a much younger kid suggest that a lot of what he's eating is basically going right through.  So, we talked with her and with Lemon's doctor about what to try next.  Here's what we're trying.

1.  Probiotics.  These fall in the "well, it couldn't hurt" category.  Knowledge about the role of intestinal bacteria in weight gain in CF is pretty minimal.  But, given the number of long courses of antibiotics that Lemon has done, something could certainly be off there.  So, we picked up some probiotic capsules at Costco this weekend and are giving him half a capsule every day.  We'll see if anything happens.

2.  Glutathione.  This also is in the "well, it couldn't hurt" category, and a placebo-controlled study just came out saying that it might actually help (you can read more here).  As with all nutraceuticals, it's actually a little hard to tell what to buy, because you never know how much testing was done to make sure that what they claim is in the bottle is actually there.  We went with a reputable brand, and will start adding that into the mix as well once it comes.

3.  New enzymes.  Those of you who are long-time readers with astonishingly good memory will recall that when we moved to Madison we had to switch Lemon from his old brand of enzymes, Zenpep, to a new brand, Creon, because of our insurance.  Creon really didn't work for Lemon at all until we started him on ranitidine (ie Zantac) to help reduce his stomach acid.  We're wondering if the combination of Creon and Zantac just isn't enough for him anymore.  Fortunately, now there's yet another enzyme choice, Pertzye (seriously, who chooses these names?).  Pertzye has bicarbonate incorporated right in with the enzymes, so the idea is that when the enzyme beads dissolve in the intestine, they'll release a little burst of bicarbonate and remove even more acid, creating a more favorable environment for the enzymes to work.  We're hopeful that this might be a good answer for us, because the other acid-reducing options aren't that attractive--either increasing the dose of ranitidine or switching to omeprazole (Prilosec), which can't be given long term.  We'd love to find a solution that will work for us long-term and that doesn't involve adding a new medication.

In the mean time, I'm stocking my house with all kinds of things that I never imagined would become pantry staples (ultra-premium ice cream, barbeque potato chips, etc) and hoping that something works out before our next weigh-in at the end of March.