Keira taking in some rays and watching the boats on the St Lawerence river go by.

Just before we left for the family reunion Keira went in for her monthy CF checkup.  While her lungs looked and sounded great, they discovered a small dot in her belly on the X-ray.  After some questioning, Keira sheepishly admitted she had swallowed a nickle at pre-school the previous day.  Swallowing a nickle isn’t too big of a deal as long as it doesn’t cause a blockage.  So, the doctors sent her on her way with the admonishment that if she should stop pooping to come back in. Well, everything was coming out just fine (even though the nickle wasn’t specifically seen) so it was believed the nickle had passed and we left for our family vacation.

Shortly into the vacation Keira’s appetite dropped off significantly.  Then she started complaining that she couldn’t sleep because her “belly hurt”.  Perhaps the nickle was still hiding in there causing issues?  Was she playing it up to stay up late (something she had done in the past)?  Intestinal problems aren’t uncommon in CF’ers; was there some new CF issue?   There were plenty possibilities.

By the time the family reunion portion of the vacation drew to a close (3 days over all), it was decided that Paige, Keira and Joe would head straight back home to the doctor while the rest of us would continue with our plans.

One week later additional abdominal x-rays no longer showed the nickle, but the doctors couldn’t come up with any definitive reason for her problem and couldn’t offer any relief for her pain.  Finally, with a few of the potential causes eliminated (the nickle, gas, blocked colon, etc) and some really consistent symptoms such as pain primarily at night, when laying down, or after drinking fruit juice, it started to sound an awful lot like my acid reflux symptoms.  With those things in mind I did a general search for info about abdominal pain in children.  After weeding out questionable sites I finally found a helpful chart and discussion on the Mayo Clinic’s website which seemed to point to a peptic ulcer.  However they are not particularly common in most children.  But Keira is not like most children, she needs to take replacement enzymes to be able to digest food.  Working on a hunch I went to the official website for her enzyme.  Turns out that ulcers are indeed a potential problem especially if the amount of enzyme is consistently too much for the amount of food eaten.  Over use of enzyme isn’t too big a problem for adults and teens, since they can easily estimate how hungry they are and match their enzyme use accordingly.  With young children it can be a real guessing game for caretakers.

Now, armed with this information we scheduled another doctor’s appointment and asked what they thought.  Turns out they were quite receptive to the information and started her on a regimen of anti-acids, modified diet, and enzyme levels.  The good news was her pain started to diminish in a couple of days.  But, peptic ulcers take a long time to heal and so she was on her modified diet for 1-1/2 months.  While we’re all very grateful to have this problem resolved, the down side to all of this is that Keira had to suffer through nearly 3 weeks excruciating stomach pain every night.

Keira blows out the candles on her Tinkerbell cake.

Keira has been very healthy over the last year for which we are incredibly grateful.  Some of the more sobering statistics for CF are those prior to 1970.  For instance, during the 1950′s the average life expectancy for children with CF was a mere 5 years.  It’s stats like these that make each milestone in Keira’s life that much more meaningful.

Keira has grown nearly 4″ in the past 2 months for a total of 37″.  While this still puts her in the 1oth percentile against healthy kids.  However, compared to other CF’ers she’s doing very well (90th percentile).

Finally, let me leave you with this darling photo of her.  Keira was the flower girl at her mom’s wedding and this totally candid picture was taken at the reception a couple of weeks ago.

In the process of changing over, the new plan claimed that several items that were covered under the NYS Child Health Plus were not covered under this “better” plan.  Of course that’s precisely when Keira came down with pneumonia.

 Keira after a beautiful Memorial Day of play – 2009

While Keira’s mom (Paige), frantically juggled the home finances, my wife and I were cautiously assessing what ‘plan b’ would be if things did not get straightened out in a timely manner.

Although things worked out (the insurance company realized their mistake and Keira didn’t need to be hospitalized this time around), I cannot express how much it helped to know that there WAS a backup.  Keira’s Fund is that backup and I once again say ‘thank you!’  Piece of mind went a long way to keeping heads level while negotiating the dizzying maze of insurance.

Let me give a huge “Thank You!” to everyone who contributed; whether that was via bidding, donating items for auction, paypal donation, or sending ‘well-wishes’, prayers, blessings, etc.  ALL of these things are needed and we’re exceedingly grateful!

Keira at our family & friends gathering “GingerFest”
12/07/08

 This year we raised:

• $1264 – Auction Bids
• $430 – Direct Donations
• $500 – Matching donation to the CF Foundation
• $500 – Match of the “Matching donation” for the CF Foundation

That means, $1694 went into Keira’s medical fund and $1000 was donated to the CF Foundation in honor of Keira.  Thank you all SO much!

Keira just before her second birthday party

This year, we have been blessed with many new additions donated by the kind folks at Woodnet Forums Additionally, I have made a handful of items re-enactors might find of interest as well as donated some blacksmithing tools.

If you are interested in bidding please go to http://auction.fisherwoodcraft.com/ and click on the registration link. If you want to simply donate that can be done via the PayPal button on the main auction page.

Finally, 50% of this year’s auction amount (up to $500) is being matched by the auction host and founder, Joe Fisher (Keira’s godfather) and will be given to the CF Foundation to help out everyone else who has CF.

When Keira was born we decided to “chart” her progress in a unique way; each year we take her photo on the huge (478#) anvil at the Schaghticoke fair.

Here’s a compilation of her progress over the past 3 years.

(Left to Right – 3 Months old, 1 Year old, 2 Years old)

 Keira finally feeling better after nearly 1 week in the hospital.

One of the first issues was that Keira’s nose was so plugged up she was unable to breath through it. This also meant she couldn’t eat because she could only breath through her mouth. Given that she had already lost 1.5lbs they couldn’t wait for the antibiotics to destroy the sinus/lung infection and her nose to clear up.  So, they would suction out her nose every four hours.

Of course Keira still wasn’t feeling like eating much of anything since she was kept awake with staggered PT (percussive therapy), nebulizer treatments, blood samples, and IV antibiotics. Eventually, after 4 days of intense medical therapy Keira started to be herself again, but that didn’t mean she was out of the woods, however.

Around the fifth day it was discovered that her blood sugar level was through the roof. After 24 hours of insulin therapy and monitoring, it was decided that the IV solutions and inhaled steroids were to blame not juvenile diabetes. For which we were immensely relieved!

Once those hurdles were cleared, the last 4 days in the hospital dragged on and on.  Although it was perfectly reasonable and prudent to keep Keira in the hospital until the doctors were sure everything would be alright, it certainly was a challenge to entertain and occupy a reenergized 2 year old.  Which was why we were very lucky to have been given a tote full of kids games and activities by our local CF center.

Finally, I want to thank everyone who helped us through those rough 10 days.  The outpouring of concern, assistance, and kindness helped to immensely lessen the burden.