The Maguire Family

Clinical Trial #2 - paving the way for other CFers

2012-02-01T16:52:00.002-06:00

In April we will be headed to Indianapolis to enroll Claire in her second Clinical Trial (the first one was inhaled Hypertonic Saline which she started when she was 4 months old).

A large percentage of people with CF end up with liver disease (yes, another scary side-effect), this study is observational and will help us monitor her liver from early on. Cirrhosis of the liver has been seen in kids with CF even at age 4!

Why do we do it? Partly as a thank-you to others who participated in trials to get us the drugs we have today, partly b/c we want to be as proactive as possible and partly to pay-it forward...so we can maybe get the 'cure' drug faster.

Here's to hoping...

BIG NEWS - 1 Drug approved, 1? to go!!!

2012-01-31T12:18:00.004-06:00

We are very excited to share that the first piece of the CF puzzle is now FDA approved! VX-770, Kalydeco (kuh-LYE-deh-koh) was approved today - this drug unlocks 1 part of the CF cure, combine this with a drug in development and we might have a cure!!!

This is called hope.

Want to help get us to the full cure? Donate to team Claire for a Cure.

Click to view a post from about 1 year ago with more info on VX-770 and who it works for, etc..

Claire's friend Brady

2012-01-30T08:11:00.001-06:00

Our friends who also live in the Chicago area have a little boy Brady about the same age as Claire, he was hospitalized with CF complications this weekend...we are pulling for you Brady! This is one of those CF reality check days - Click here to read more...

Family skate...

2012-01-29T12:28:00.001-06:00

Maggie has the best (and warmest) seat in the rink.

First skate of 2012

2012-01-22T21:55:00.001-06:00

Hooray, west park rink has finally frozen and we got to go skating.

Peek a boo Mickey

2012-01-13T07:50:00.001-06:00

1st time both girls met Mickey Mouse....Claire adored it, however as soon as Mickey touched his nose to Maggie's she was terrified. Truly a magicical day.

First slumber party with cousin Quinn

2012-01-07T19:45:00.000-06:00

Too many giggles to count....

Maggie ~ 9 months old today!

2012-01-02T10:22:00.001-06:00

Happy 2012!

2012-01-01T11:04:00.001-06:00

Hockey anyone?

2011-12-27T06:58:00.001-06:00

Maggie looks at her big sister (while chewing on the train set Santa brought) decked out in her pink hockey gear....now only if the rink would freeze!

New Year, New Treatments, New Hope....

2011-12-19T20:34:00.000-06:00

Last year, as some of you may recall, we got a nice big box in the mail - and nope, it wasn't a new electronic gadget from Santa, well, maybe it can be considered that - we got the 'Vest' in the mail - which for the past year we have spent over 175 hours with Claire wearing it for CF treatments, Maggie has spent most of that time cheering her sister along and most recently trying to chew the tubes (infants will teeth on anything).

Treatment time has also continued to be regular story time for our family and our wonderful library has been a constant in our life - and one of our kid's favorite places to go.

The month of December (or really since Thanksgiving) has been spent trying to get Claire better, she caught a little bug that didn't want to go away - our CF Doctors have continued to be amazing partners in pro-actively taking care of her health. She is now on the upswing and hope we are close to 100% for when Santa arrives later this week. Maggie has continued to be a joy and is quickly becoming Claire's best playmate.

Later this week we will start another CF medicine called Pulmozyme - it is an inhaled/nebulized medicine that breaks down the DNA of mucus in your lungs basically helping keep her clear longer. Since we were on inhaled Hypertonic since she was 4 months old we didn't start earlier, but our CF Care team strongly feels this will help maintain a good 'baseline' until we have a cure for this crazy disease - to us it's an additional 10-15 mins of treatment each day - and another story or two for us to read together.

Christmas card from kilimanjaro

2011-12-17T09:01:00.001-06:00

Our dear friend Craig(Claire's godfather) is spending the year in South Africa, working with the Zulu population. What he is doing is beyond an example of humanitarian work, the families and AIDs patients he helps are truly blessed to have his support. He sent a picture from when he climed to the top of Mt. Kilimanjaro with a banner titled to celebrate CFF 'to the roof of Africa, one breath at a time', truly amazing.

First snow!

2011-12-17T08:26:00.001-06:00

CFF Feature Story

2011-12-14T16:21:00.001-06:00

The CFF posted a profile on team Claire for a Cure....thank you all again for your support- you make the day-to-day possible for us.

http://www.cff.org/aboutCFFoundation/NewsEvents/12-14-Great-Strides-Great-Stories-Team-Maguire.cfm

Sisters...

2011-12-14T06:11:00.001-06:00

Already making cookies together...and getting ready for the 2011-2012 hockey season.

Fall Flashback.....

2011-10-31T22:49:00.004-05:00

Maggie and Claire - our little pumpkin patch...

Halloween 2011 - Bounce! (video and photos)

2011-10-31T21:38:00.002-05:00

We are going to the zoo....monkey, banana, gorilla and zookeeper and plenty of bouncing. A fun and gorgeous fall day! Best line of the day: Claire wakes up from her "nap"/rest time and says when she looks out the back window "It's Christmas", referencing the huge pumpkin bouncy house in her yard - our response, yes Claire, it's Christmas...such a sweet child. Baby Finn was an adorable flower for her 1st Halloween...

After 2 hours of bouncing, Claire comes up to us with a bloody lip.. it didn't even phase her. When we asked her about it she said it tasted salty...and then went back to playing...

Uncork! a great sucess this year! - over $100,000 raised for CF Research

2011-10-15T23:39:00.001-05:00

The Uncork the Cure Wine event in Lake Forest was a great event this year - over $100k raised for CF research.

Thanks to all who came - we had a great time! See you at the walk in May!

Kicking Cancer for our Cousin

2011-10-10T22:13:00.001-05:00

http://www.caringbridge.org/visit/scottpalgen
Keep on fighting Scott, Emily and Julie!

Maggie's Baptism

2011-10-09T16:23:00.004-05:00

Contest - Uncork the Cure Lake Forest on October 15, 2011

2011-10-07T20:25:00.002-05:00

Family & Friends -

We hope you are all having a great Fall and enjoying the last warm days before winter. As a special thank you to everyone who supported our 2011 CFF Walk Team "Claire for a Cure" last May, we are holding a contest to give away 8 individual 'free' tickets to the Saturday, October 15, 2011 Uncork the Cure Event in Lake Forest - last year the event was wonderful and was a great tribute to people living with CF.

Click this link and enter your email address, we will draw names next week and communicate the winners - feel free to forward! http://www.surveymonkey.com/s/9RKPC5Y

All the best,
Ryan, Shannon, Claire and Maggie Maguire
http://themaguireclan.blogspot.com

7th Annual UNCORK THE CURE for CF (Last Year's Video: http://www.youtube.com/watch?v=2TWkRQlDH8U)
Honoring Dr. Harry Griffith, Superintendent of Lake Forest School Districts 67 & 115
Saturday, October 15th, 2011
Lake Forest Club
554 N. Westmoreland Rd., Lake Forest, IL
Wine Tasting, Food and Entertainement 7:00 PM-10:00 PM - $100 per person ($26 is tax deductible)
To Purchase Tickets visit: http://grillinois.cff.org/lakeforestwine

1st Day of Pre-School for Claire

2011-09-08T08:00:00.000-05:00

Today is Claire's 1st Day of Pre-School! She is really excited and helped pack her backpack. We survived her 1st school project (a family mobile for the classroom) - and only a few glue gun burns....I guess we have plenty of time to get good at it!

Riding for a Cure

2011-08-18T18:29:00.001-05:00

Riding for a cure...CF Cycle for life

A friend of ours is riding 65 miles this September to help find a cure for CF! Go, Go, Go!

The Power of Two Movie

2011-07-19T21:01:00.000-05:00

New movie about twin sisters with CF coming this Fall...

Welcome to our new cousin ~ Finn Therese Jackowski!

2011-07-18T20:50:00.000-05:00

We are so excited to add another girl to the family, Shannon's sister Aileen & her husband Aaron brought Finn Therese Jackowski into the world today at 9:25am (6lbs, 5oz - 20in). We can't wait for the girls to meet! Shannon is going to be Finn's godmother too!

Summer in Door County!

2011-07-17T21:19:00.000-05:00

Fun times with Aunt Shannon & the girls!

Beach Buddies

2011-07-14T20:31:00.001-05:00

Fun in the sun with friends at the Lake Forest Beach!

Waiting for Aunt Aileen's Baby...

2011-07-12T21:01:00.001-05:00

Claire thinks it is going to be a boy...we will see, hopefully soon!

Americas Got Talent - Entry Video - The ABC's

2011-07-12T20:50:00.014-05:00

Kidding it's not an entry video, but she has 'potential'....here is Claire's ABC rendition from today...full of 2 year old drama...(she didn't know we we taping her at first)

Summer Days....

2011-07-11T19:54:00.000-05:00

Happy July 4, 2011!

2011-07-04T13:52:00.005-05:00

Lots of fun in Lake Forest this 4th of July weekend!

Maggie - 3 Months Old!

2011-07-02T16:01:00.000-05:00

Summer Camps!

2011-07-01T14:41:00.000-05:00

Claire's first Dance Class (w/Cousin Quinn), Camp Botanical Garden and Gorton Center Summer Camps, summer fun!

Mother's Day ~ Father's Day 2011

2011-06-18T20:12:00.002-05:00

Amy & Jeromy's Wedding in Tampa & Sightseeing

2011-06-04T21:31:00.004-05:00

Fun at the zoo, camel ride, wedding and children's museum!

Maggie - 2 Months Old!

2011-06-02T19:28:00.000-05:00

Strike!

2011-05-16T17:47:00.002-05:00

Claire and Seamus bowling at Pinstripes.....

http://www.youtube.com/watch?v=6Mx2r3fHF7Y&feature=youtube_gdata_player

See you all Saturday...an early thank you for all your support!

2011-05-13T11:58:00.003-05:00

An early thank you for a successful 2011 walk season!

We are humbled by the overwhelming support that our friends, family, and even a few people we haven't met have extended to us this year! We are walking this Saturday with immense gratitude, thank you.

Final Details for Satuday --Cystic Fibrosis Great Strides Walk Day:
Saturday, May 14, 2010
--8:30am Check-in Begins
--9:15/9:30 Team Photo, The Lake Forester will also be there
--9:40 Maguire Family will kickoff the walk/sponsor thank you with Liz Burke from CFF
Notes: Yard Games, Leashed Pets are welcome, coffee, breakfast, water, juice, lunch and snacks will be provided
Lake Forest Park Beach, Lake Forest, IL
From 94 - exit route 60/townline road and head EAST, turn Left at 43/Waukegan Road, Right onto Deerpath -- take deerpath all the way to the lake, you will see signs for the walk

All the best,
Ryan, Shannon , Claire & Maggie Maguire
Thank you for helping us make CF stand for Cure Found!

Team Claire for a Cure on Gazebo News

2011-05-11T20:46:00.000-05:00

http://gazebonews.com/2011/05/11/for-claire/

The local newsblog Gazebo News highlighted our CF walk happening this Saturday! Thanks Adrienne!

Top teams for 2011 Great Strides CF walk!! (as/of 5.3.11)

2011-05-05T21:43:00.001-05:00

A huge thank you to everyone who has helped us get here this year!!!

http://www.cff.org/great_strides/topStriders/topteams/

Top Teams - 2011
We thank the many teams who have already raised $25,000 or more for their local walk sites in 2011! Check out the list of top Great Strides teams from 2010!

Maggie 1 month old!

2011-05-02T20:51:00.003-05:00

15 Days to the Cystic Fibrosis Walk at Lake Forest Beach with Team Claire for a Cure

2011-04-30T06:37:00.001-05:00

A big thank you to everyone who will be walking on Saturday morning the 14th and/or has donated this year!

Planning on walking on the 14th? Remember to sign up online so we have enough team t-shirts!

Cystic Fibrosis Great Strides Walk Day Details:
Saturday, May 14, 2010 - 8:30am
Lake Forest Park Beach, Lake Forest, IL (http://www.cityoflakeforest.com/pdf/rec/winter%202011/mapoffac.pdf)
(Walking at another location? let us know and we will send you Claire for a Cure team t-shirts)
Thank you in advance for joining the fight against CF!

All the best,
Ryan, Shannon, Claire & Maggie Maguire

Maggie's Cystic Fibrosis Sweat Test

2011-04-19T20:47:00.002-05:00

Maggie we went to Childrens Memorial Hospital to rule out CF for Maggie (we identified she is carrier for CF) the test went well, her sweat chloride levels were normal (around 15), Claire's were over 100, this was great news, and a big relief!

Video of Maggie's Sweat Test

Big Sister, Little Sister

2011-04-09T19:21:00.003-05:00

Claire's first visit to see Maggie at the hospital and some pictures from our first week home. Both sisters have been great this week and Claire runs around the house saying her little sister's name and is excited to see her each morning. It is very cute to see them together!

The big 2!

2011-04-08T06:26:00.004-05:00

Happy Birthday Claire! Or as she sings....'Happy-Day...to YOU!'.

When we asked her what she wanted for her birthday (besides a cure for CF) she said 'a cupcake'. So, we will be celebrating with cupcakes, a new baby doll and a trip to the Kohl Children's Museum!

Happy Birthday to Margaret Mae Maguire!

2011-04-02T00:10:00.004-05:00

Ryan, Shannon and Claire are proud to announce the arrival of the latest member of the Maguire Clan....

Margaret "Maggie" Mae Maguire Arrived at Lake Forest Hospital on April 2, 2011 at 12:10 am 7lbs 7oz, 19.5 inches

Claire is excited to have a little sister...Ryan and Shannon are doing well too!

(We named her Margaret after Ryan's grandma Marjorie and Shannon's grandma Peggy. Margaret is also her aunt Moira's middle name. Mae is Shannon's middle name as it also was her grandmothers middle name.)

Off to the hospital...and no, this is not an April Fools Joke!

2011-04-01T15:00:00.002-05:00

Off to the hospital...(thanks to cousin Colleen for convincing Shannon during lunch with Quinn and Claire that, yes her water broke and she was likely in labor...and to grandma & grandpa Duffy for coming by to help with Claire)

CF Research News (still not the drug for Claire's mutation, but a step forward!!)

2011-03-29T11:11:00.001-05:00

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/3-29-Phase-3-VX-770-in-Children-Shows-Improvement.cfm

Take the poll....Boy or Girl?

2011-03-23T23:47:00.001-05:00

http://themaguireclan.blogspot.com/

Will #2, due on 4/11/2011 be a Boy or Girl? Your guess is as good as ours! (Enter your vote on the left side of our webpage.)

Baby # 2 is on it's way...only about 20 days until our due date

2011-03-22T19:34:00.002-05:00

Thanks to Amanda Couch for her photography expertise and for capturing week 33/34!!

Sláinte ~ Happy St. Patrick's Day 2011

2011-03-17T06:33:00.002-05:00

Claire, wishing everyone a Happy St. Patrick's Day and showing off her 'shamrock stickers'. Sláinte http://www.youtube.com/watch?v=Xvlk5lhB5Ko

March 2011 - CF Clinic Visit - Update & Baby Maguire #2 Update

2011-03-10T21:21:00.002-06:00

Good news - Claire's culture was clear, just some 'normal flora'! We have to keep our eye on her for the next few weeks to see if anything comes back...but until then we are only helping her 'gut' get back to normal after the antibiotics- it tends to throw off the balance a bit and requires some work on our part to keep things in check (clearly we are sparing you the details).

Baby #2 is doing well...on track for April 11...we were excited to hear today that the head is down - as many of you know #1/Claire was stuck head-up and never moved, so we will have a chance to have a regular delivery!

March 2011 - CF Clinic Visit

2011-03-02T13:05:00.001-06:00

Today's Clinic visit went well, we are just waiting for the results of Claire's throat culture to make sure she doesn't have any bugs growing from the RSV. Her weight is up to 25lbs 12oz and she is 31.7 inches tall now, still a bit short for her age/projected height range, but she is growing!

We were taught the Minnesota Vest Protocol for CF - it's a modified method for using the Vest with custom 'oscillations' varying from slow to fast. It is supposed to target the varying areas of her airways to make sure the vest 'loosens' up the mucus! We'll start that protocol with this afternoon's treatments!

Join us on Saturday, May 14 – ‘Walk at the Beach’ to cure Cystic Fibrosis!

2011-02-23T20:45:00.000-06:00

Click to join our team/donate http://www.cff.org/Great_Strides/ShannonAndRyanMaguire

Did you know…Part of living with CF is the regular treatments to be proactive about the disease…. Did you know…last year alone Claire took/had over…
• 9,125 digestive enzymes
• 1,095ml of Zantac (used for increased absorption in CF)
• 180 hours of ‘tap tap’ with mom and/or dad
• 245 hours of inhaled hypertonic saline
• 1460 puffs of albuterol
• 400 doses of probiotics
• 365 ¼ tsp doses of salt supplements
• Endured 2 sedated pulmonary function tests
• 30 hours in CF Clinic/doctors Visits

Where we are at today -- 2011…
Claire is a wonderful toddler, in the past year she has mastered walking, talking, running, hide-and-seek, singing songs, her full ABC’s, frequently asks to see ‘pictures’ on our cell phones, and can count to 18 on a good day, and even spell D-O-G. She has adapted to many changes over the past year, she has a little brother/sister due in April, she learned to hold her Nebulizer mask on her own, finished her 1st Clinical Trial for Inhaled Hypertonic Saline, and in February she started using The Vest system to clear her lungs (this takes place of the manual ‘tap tap’ we did), had a nasty case of RSV.

She is like every other almost-2 year old and you wouldn’t know she had CF -- which our Doctors attribute to our diligence to treatments!

Team Sponsorship Information
We are looking for Team Claire for a Cure t-shirt sponsors (business logos/family names will be placed on the back of the shirt) – email themaguirefamily@gmail.com for more information.

Thank you in advance for joining the fight against CF!
All the best,
Ryan, Shannon , Claire & Baby #2 Maguire

*** For the Duffy’s coming in from out of town…on Sunday the 15th (day after the CFF walk), we'll be walking downtown Chicago for our cousin Andy Black who is a survivor of colon cancer, join us if you are in town! ACS Chicago Walk & Roll- team CancerVive-- http://main.acsevents.org/site/TR?pg=team&fr_id=34383&team_id=870524

Flashing back….how CF came into our life…
As most of you know, almost 2 years ago on April 8, 2010 our daughter Claire was born -- the following Friday we received a phone call no parent wants to receive - it was our pediatrician calling to let us know that the State of Illinois newborn screening test identified that she was positive for Cystic Fibrosis. We were told we needed to bring her to Chicago’s Children's Memorial Hospital on Monday to get a sweat test to confirm the diagnosis – after a weekend of praying and stress, we made the trip downtown and after a long day we were given the official diagnosis... The first few weeks were spent trying to figure out not only just how to be first-time parents but how to give a baby bright orange liquid vitamins without ruining every outfit, measure out ½ of mini capsules of enzymes in the middle of the night without spilling the little beads, and learn how to do chest therapy- or as we call it ‘tap-tap’.

During all of that we somehow managed to join the 2009 Great Strides walk -- thanks to our close friends who encouraged us to start a team- it was a huge morale booster for us! About a month after Claire was born our team “Claire for a Cure” had formed and we had about 80 walkers raise over $20,000 – more than we ever expected. This support will help us and other families dealing with this disease. Last year we also had a successful walk – we had the largest walk team at our walk and we raised almost $30,000, not to mention the day was great, we had a bouncy slide music and great weather!
______________________________________________________________

Status on CF Research (http://www.cff.org/treatments/Pipeline/ )
Did you know that the genetic therapy research being done for CF will likely be leveraged to help cure diseases like MS and Parkinson’s? We are hopeful that in the future there will be a cure for CF – the CFF directly supports the research & development for a cure with nearly 90 percent of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.
*** We have some CF friends in the Vertex Clinical Trials for VX-770 and VX-809 (which targets the same genes Claire has) and they are very hopeful about the possible outcomes…great news for us!

What Is Cystic Fibrosis? http://www.cff.org/AboutCF/

The Cystic Fibrosis Foundation http://cff.org/

NY Times Article on Vertex Drug Trial Early Results (steps towards a cure...)

2011-02-23T20:33:00.003-06:00

Click to read NY Times Article on Vertex Drug Trial Early Results
...We are excited about the results of the VX-770 drug that were released today. VX-770 is one of the drugs being Developed by Vertex Pharmaceuticals aimed at 'correcting' the CF gene. This drug is aimed at a different CF mutation than what Claire has, BUT, they are also testing VX-770 and another drug VX-809 which they hope will 'correct' the lung function issues in CF (but maybe not all the pancreatic issues...). If we had to take 2 pills a day instead of hours of treatments...that is pretty awesome!

Still, from what our Dr's say IF this combo of VX-770 and VX-809 works in clinical trial this is probably 4-5 years away from Claire being able to access the drug! Fingers crossed and prayers on that front!

Are you out of State? Want to Walk for Claire for a Cure in a Great Strides Walk near you?

2011-02-23T17:18:00.002-06:00

We have friends and family that don't live nearby and are choosing to join a local walk instead of making the trip to Chicago (kudos!!).

Here is how to walk for team "Claire for a Cure" in your neighborhood:
1) Click http://www.cff.org/great_strides/find_a_walk_site/index.cfm
2) Pick your city/state and walk site
3) Select
I am a Team Leader:
*** I am a Team Leader creating a team.

4) Fill out all info
5) When they ask you is your team part of a nationally sponsored team? choose YES
6) select National Family Team Maguire- Claire for a Cure

That way your team is linked to our 'umbrella team', if you let us know far enough in advance we can send you t-shirts for your walk day! Here is a peek at some of our National Family Team walkers last year: http://themaguireclan.blogspot.com/2010/05/our-national-family-team-thanks.html

Happy Valentine's Day - give a Valentine today!

2011-02-14T05:00:00.003-06:00

Http://themaguireclan.blogspot.com
Give a Valentine today! Join our CF walk team on May 14th!

This year we will be walking at Forest Park Beach - it should be a beautiful walk with great views of Lake Michigan! For the runners, you can also run the course!

http://www.cff.org/Great_Strides/ShannonAndRyanMaguire

RSV and CF, not a great combo...

2011-02-12T20:40:00.003-06:00

Claire came down with RSV this past week, we aren't sure where she picked it up, but apparently almost all kids get it before age 2, we are just lucky she didn't get it when she was younger...typically kids get over RSV in 1-2 weeks, our doctors said that it could take Claire 6-8 weeks to fully recover (luckily the baby is due a bit after that....). RSV can make the CF lungs more susceptible to Pseudomonas aeruginosa infection (http://www.ncbi.nlm.nih.gov/pubmed/17515861), bronchitis, and pneumonia so we are doing extra treatments and her doctors at Children's have her on some preventative medicine to curb the virus from allowing other stuff to 'flare up'. We have never seen her cough up so much stuff.

Info on RSV: http://www.rsvinfo.com/diagnosing/diagnosing.html

Baby Steps, V-Day for CF and Itsy Bitsy Spider....

2011-02-08T20:22:00.006-06:00

Today Claire was trained on using the Vest System, this is an alternate treatment (and a really great way to 'pump the lungs'). Our Dr's feel it is best to wait until kids are close to 2 years to use the Vest, since their chest wall isn't developed. They let us get it early because Baby Maguire is on the way, and we wanted to have this in place before to get some of the changes out of the way before Claire's brother or sister arrives!

She did a great job and we even got her to sing itsy-bitsy-spider...singing when you have the Vest on sounds like when you talk into a fan! It is a bit heartbreaking to see her in the Vest, but it is really the best step we could take for her care! She still asks for 'tap' 'tap' so we end up doing both, and will phase the manual CPT/taptap when she is ready.

Groundhog Day Snowstorm

2011-02-02T21:14:00.005-06:00

Let it snow let it snow...24 inches of snow hit us for Groundhog Day this year...schools were closed, Lake County closed roads, luckily we could work from home that day!

Last Infant PFT (pulmonary function test)

2011-01-24T22:52:00.002-06:00

We had out last Infant PFT (pulmonary function test) at Children's Memorial Hospital today. We now have to 'train' her on how to blow into the adult PFT machine, typically kids can do this successfully when they are around 4-5 years old (and they don't need to be sedated!!).

Her test came out excellent, no air pockets and great FEV levels (over 100%). The Dr's think our commitment and natural/healthy diet plays a big factor in keeping her healthy!

The worst part of the PFT is getting her to sleep, she has a hard time with the sedative and it takes about an hour for her to fall asleep. This time she woke up early and never went back to sleep -- we tried all day to get her to nap off the drug, but she stayed awake and was CRAZY...she kept trying to walk, but would fall over, it was horrible. We basically spent the entire day carrying her around and trying to calm her down. We'll take it though...the test results were wonderful.

Florida 2011

2011-01-18T20:02:00.013-06:00

We had a nice visit with Grandma and Grandpa Duffy in Florida. Claire's favorite things to do: touching a live lobster, feeding seagulls, chasing sandpipers, running into waves(pretty brave little girl - going in to the ocean waves on her own), and Taco City. She also got her 1st tricycle -- she was a natural!

Go Fish!

2011-01-13T20:32:00.001-06:00

We visited Shannon's friend Amy in Tampa and went to the Aquarium, the 800lb grouper was huge!, and Claire was testing out her surfing skills!

Gulliver Travels to Vermont....

2011-01-01T11:04:00.005-06:00

First movie theater experience with the Maguire cousins on a to warm to ski New Years Day in Vermont...check out the 3D shades watching Gullivers Travels ...by the way-Claire sat still thru the whole movie...crazy!

Merry Christmas 2010!

2010-12-25T20:59:00.000-06:00

Merry Christmas! We had a wonderful Christmas and enjoyed time with family. Here is a video of x-mas morning and playing with some gifts.

Walking Downstairs X-Mas Morning:

Puppy from Santa ("sit!"):

First time on Hockey Skates! (click for more pictures)

2010-12-18T14:10:00.003-06:00

Claire bought Ryan toddler hockey skates for his birthday so they could skate together. This Saturday they hit the ice at West Park for the 1st time with her friend Carmelina. She was a natural!

Scared of Santa 2010 - Santa gave her a puppy and she is still terrified!

2010-12-16T22:43:00.001-06:00

Scared of Santa 2010 - Santa gave her a puppy and she is still terrified! - Check it our on ChicagoTribune.com

Clinic Visit - December 2010

2010-12-15T18:48:00.004-06:00

Other than the 'torture chamber' aka the x-ray machine harness today(annual chest x-ray to look for any lung build-up....Claire had a good CF Clinic visit at Children's Memorial - now at 32inches and 23lbs 15.5oz (still a bit short but we are working on it!).

She also got measured for her 'Vest' therapy machine - which we ordered for her in pink of all colors! www.thevest.com --> after we get it we can even order 'skins' for the compressor. If we let Claire design her own right now it would be a combo of puppies, horses, bears, Elmo and some of the pictures from Christmas cards of kids she loves carrying around. We'll be starting it in Feb/March...it will be interesting how she responds to the new treatment!

2010 Baby Jesus Birthday Party & Play

2010-12-11T14:00:00.001-06:00

Claire was a sheep in the St. Mary's Guild play this year...she ran down the aisle in front of the sheppards and then ran back away from everything...she must have been a bit overwhelmed! She loves chasing her friend Maddie though!

Birthday with Santa

2010-12-10T21:36:00.003-06:00

For Ryan's Birthday we met him at his office downtown for lunch and visited Santa...Claire is still afraid of Santa even though he gave her a little puppy!

Elf Yourself 2010...

2010-12-10T20:46:00.005-06:00

Click Here...https://www.facebook.com/l.php?u=http%3A%2F%2Felfyourself.jibjab.com%2Fview%2F68J4T5N35jXXyAW8%3Fcmpid%3Dey_fb_self&h=1dbac

Cute video that explains CF in 'Kids words'...adorable

2010-12-06T19:16:00.003-06:00

It explains how 'CF' kids can't get other kids sick...we love that is dispels that rumor!!

1st Snow of 2010

2010-12-05T09:32:00.002-06:00

A big snowstorm hit on Saturday December 4th, we made our way to our Ultrasound for Baby #2, Swim Class, to see Santa at SouthGate and out to lunch with Rob at Deerpath...busy day! Oh, and after nap we made a snowman and went sledding...

1st time looking for the 'Elf on the shelf'

2010-12-01T20:45:00.003-06:00

http://www.youtube.com/watch?v=5aL4lOtLtu0

The elf (yet to be named), arrived the day after Thanksgiving...long video, a 19 month old takes her time looking for the elf...

Gobble Gobble...

2010-11-25T22:42:00.000-06:00

Getting the idea...

2010-11-22T15:59:00.003-06:00

She has a way to go - but cute

(and a bit obsessed with the phone these days)...

Big Sister!

2010-11-12T06:27:00.001-06:00

Guess who will be a Big Sister next April!
We are excited about the new addition - and even more good news is the baby dosen't have CF. Now on to getting Claire ready for a big-girl bed....

Happy Halloween!

2010-10-31T20:51:00.001-05:00

Halloween was a blast this year! We enjoyed the Market Square Party and had fun hosting a trick-or-treating pre-party! Claire was a puppy and Ryan was a 'Dog Catcher'. Great weather and over 200 treats handed out - someone put the word out that Atteridge was a fun place to spend Halloween!

Fall 2010

2010-10-13T20:01:00.001-05:00

(picks her pumpkin with a 'kiss')

Strolling on Atteridge...

10-10-10 Chicago Marathon

2010-10-11T08:12:00.002-05:00

Craig finished in 4h22m - unbelievable time! The weather was pretty hot towards the end of the morning -but it was a beautiful day. We stayed downtown to watch the race and Claire seemed to enjoy being in the city for the day. The CF foundation team raised around $70k - great job! Next year the CFF asked us if Claire could be the race mascot to help promote the race - we are not sure if she can run it yet, but she will be there to cheer everyone on!

Northern Wisconsin - Labor Day Trip

2010-10-06T23:49:00.002-05:00

McGovern, Kerrigan and Maguire Clan's up north!

October 2010 Clinic Visit

2010-10-06T23:07:00.002-05:00

Our clinic went well today. Since kids with CF are asked to wear masks at clinic we have been trying to get Claire to keep the mask on....it is a process-I think we are up to 2 minutes!

We also now have a timeline for when Claire will get "The Vest" (Sized in January and we will get the vest and have training in March). This will eventually replace 'tap tap' (chest physical therapy) that we do with her little blue drums, and once she is used to it we can likely pair the vest with some nebulized breathing treatments at the same time.

We did the normal clinic things, oxygen levels, blood pressure, chest exam, and met with all the Dr's and nurses. Her weight gain was on target (now 23lbs 15oz and 31in) and she is finally in the right bracket to meet her genetic potential for height (she was a shortie for a while!).

The Climb...

2010-09-26T20:14:00.005-05:00

Click here to RSVP for Uncork the Cure 2010!

Although we typically participate in the CF walk each spring as our 'fundraiser for CF', this year 5 children were asked by the CFF to be honored at the 2010 Uncork the Cure event, including Claire. We were delighted and are so grateful for all the support the foundation has given us and other families, we accepted and hope some of our friends and family can join the party!

This year we have amazing auction items including Packers-Bears tickets, instant wine cellar, 7th row, center VIP tickets to Wicked (includes dinner for two at Gene & Georgetti’s and a one night stay in the executive suite at the Union League Club), and 2 round-trip airline tickets to anywhere in the US!!

(thanks to Ryan for a great video)

October 16th - Claire will be honored at the CFF's Uncork the Cure Event!

2010-09-08T20:11:00.004-05:00

2010 Honorees - Claire, Anna, Jackson and the Van Vleet Twins!

Click here to RSVP for the event!

FOR IMMEDIATE RELEASE:
September 8, 2010

CYSTIC FIBROSIS FOUNDATION “UNCORKS” 6th YEAR EVENT TO FUND RESEARCH TOWARD A CURE
The Wine Opener to Feature Fine Wine, Delicious Food, and Great Auction Items
The Greater Illinois Chapter of the Cystic Fibrosis Foundation announced its fund-raising event, Uncork the Cure, taking place in Lake Forest on October 16th, 2010 at the Lake Forest Club. The Cystic Fibrosis Foundation is proud to honor the children of the Uncork the Cure Committee – Amanda & Brittany VanVleet- age 9 of Lake Forest, Jackson Petroshius- age 1 of Waukegan, Anna Papavasiliou age- 1 of Northbrook and Claire Maguire- age 1 of Lake Forest for their incredible fight against Cystic Fibrosis and their will to beat this disease.

Uncork the Cure, which is the 6th annual Lake Forest Wine Opener, is intended to reach the growing audience of wine enthusiasts in the North Shore area and offers this demographic a new and inventive way to raise funds for Cystic Fibrosis (CF) research and care. The unique appeal of this event coupled with the mission of the Cystic Fibrosis Foundation offers a worthwhile experience for attendees and sponsors alike.

The 300 expected guests at Uncork the Cure will be invited to taste a wide variety of wines supplied by Moët Hennessy USA as well as enjoy the variety of foods provided by the Lake Forest Club. The evening will also feature incredible live and silent auctions and “Stock Your Cellar” wine raffles.

Tickets for Uncork the Cure are $100 in advance and $125 at the door. For more information, or to inquire about tickets or sponsorship opportunities, please contact the Cystic Fibrosis Foundation at 312-236-4491 or via email at eburke@cff.org

CF is a genetic disease that affects approximately 30,000 people in the United States. A defective gene causes the body to produce abnormally thick, sticky mucus that leads to chronic and life-threatening lung-infections and impairs digestion. When the CF Foundation was created in 1955, few children lived to attend elementary school. Today, because of research and care supported by the CF Foundation with money raised through donations from individuals, corporations and foundations, the median age of survival for a person with CF is 37 years.

Contact: Elizabeth Burke, Sr. Director of Special Events at the Cystic Fibrosis Foundation
Phone: 312-236-4491 x 114 E-mail: eburke@cff.org

Would you run a marathon to support finding a cure for CF?

2010-09-07T18:11:00.000-05:00

This Fall Claire's Godfather and dear friend Craig will be running in the Chicago Marathon with Team CF! Go Craig! http://www.cff.org/LWC/CraigMcMahon

Dear family & friends -
As many of you know my one-year-old Goddaughter, Claire Ann Maguire, daughter of Ryan Maguire (Villanova University Class of 2001) and Shannon Maguire, has Cystic fibrosis.

To help support vital research efforts, I have taken on the challenge of running the Chicago Marathon October 10, 2010 to support the Cystic Fibrosis Foundation (CFF).

What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: - clogs the lungs and leads to life-threatening lung infections; and - obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live well into their 30s.

Please visit my home page and join me to help raise funds for investment in vital CF programs to support research, care and education.

http://www.cff.org/LWC/CraigMcMahon

peace,

Craig McMahon

New Puppy...

2010-08-29T12:00:00.003-05:00

Nope, not our new puppy, but Shannon's sister Aileen & her husband Aaron's new puppy (German shorthair, appropriately named 'Hans'. Claire was ecstatic to meet a puppy just as small as her!

Big Girl

2010-08-27T21:05:00.002-05:00

We are excited! Claire is now holding her nebulizer on her own...we understand it might not be a big deal to everyone, but after over a year and over 80 hours of holding the mask for her it is nice to have free hands to turn the pages of the books we read!

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Great Clinic Visit

2010-08-05T19:24:00.001-05:00

We had a great CF Clinic Visit at Children's Memorial yesterday. Claire is right on target and doing well both BMI and lung-wise. We had her throat cultured and her annual blood draw as well as other routine visits.

We also met (at a distance) another family who lives nearby and has a 10 month old girl with CF - she is also doing really well and it was nice to swap stories for a little bit.

Vist from the Fire Department at our Block Party this past weekend

2010-07-28T19:25:00.000-05:00

Back on Hypertonic Saline

2010-07-21T21:06:00.001-05:00

The CF Clinic gave us the green light to go back on Hypertonic Saline, we are hoping she responds well to it. We are starting it once a day for a week and then going to 2 times a day. We are hoping Claire the response is positive otherwise we'll have to switch to another drug which requires refrigeration (yet another thing to make travelling a challenge)!

They also mentioned that we are likely going to get "The Vest" in a few months. I think at that point we'll let her watch a little TV during treatments!

1st Bike Ride!!

2010-07-11T19:00:00.003-05:00

We took our 1st family bike ride to the Lake Bluff Pool this weekend! Claire loved her new helmet and had a great time biking with mom and dad.

End of the Hypertonic Clinical Trial and a little cough...

2010-07-08T14:15:00.000-05:00

Claire went off the ISIS (Hypertonic saline trial) and began taking the real HS. We figured out (by taste test) that for the trial that she was on a lower salt % than Hypertonic.

Right after starting the HS Claire had a 'productive'/CF cough and her doctors put her on antibiotics to prevent any bacteria from setting up home in her lungs.

The HS is supposed to help people cough and clear thier airways, but not when you are so young. So the Dr. had us stop the HS until we get her lungs back to 'normal'. We'll likely go back to doing HS 1x's a day when she gets better!

A long...and coughy week!

Milwaukee with SNC Friends

2010-07-05T14:12:00.002-05:00

We spent July 5th with Dylan, Seamus, Maura & Barkley! A fun day in Milwaukee at the Trotta's!

Happy July 4th

2010-07-04T22:10:00.004-05:00

A hot but fun 4th of July Parade in Lake Bluff!

It wasn't me...

2010-07-01T10:41:00.000-05:00

Our babysitter came to get Claire from her morning nap and found this mess...stink factor of 10!

Second Infant PFT at Children's Memorial

2010-06-21T12:52:00.001-05:00

Today was a hectic "CF" day - we had our second Infant Pulmonary function Test at Children's Memorial Hospital. The test assesses Claire's lung function and looks for potential issues as well as 'trapping' of air. This test is given every 6 months and is also required for the Clinical trial for Hypertonic Saline that she is involved in. Her results were really great and we are hoping that it's because of all the time we spend doing preventative treatments. After a long day, it was great news!!

Summer fun and snow cones....

2010-06-20T12:06:00.003-05:00

First snow cones (yes she had 2 of them!, but it was just the ice)...

June 2 Clinic Visit

2010-06-02T14:42:00.000-05:00

Claire had a great clinic visit this month.

She gained some weight and height and her BMI is right on track!

Memorial Day 2010

2010-05-31T05:59:00.006-05:00

We had beautiful weather for Memorial Day Weekend!!

Claire missed the group shot -- she was pretty tuckered out and was already in bed!

Our National Family Team - Thanks!

2010-05-25T09:26:00.002-05:00

We are lucky to have a few friends in other states participate in Great Strides Walks as part of team Claire for a Cure! The CFF set us up as a national family team so teams can register under the Maguire Family in any state!

Thanks to the Raptis family with thier adorable twins who walked in NYC on Sunday and the Carricatos who are walking in N. Carolina!