Check her out!  In her whole life I don't think I have felt this good about how she looks.  She has excellent color and wears a smile more often than ever.  Maybe that is why I have such anxiety over her upcoming doctors appointment.  I look at her and think she is all better but the doctors are going to listen to her and...

It's like I keep saying, it's what's on the inside, what we can't see.  This disease (and this infection) hide themselves so well.  How can anyone tell me that my tiny angel doesn't have the same chance at a full lifetime of health and happiness that her brothers have.

Thank you for trying to keep up with Meaghan.  The best thing you can do for her is raise awareness of cystic fibrosis by sharing her story with everyone you know.  The foundation needs our support.  Meaghan has her own Great Strides walk team, if you would like to join us click the link on this page.  We need walkers and donors.  I am always here to answer questions you might have.

Hello again,

What a week.  School's out for Meaghan and daddy had some extra time with us the end of the week.  We went to the bowling alley Thursday.  Meaghan and Jonathan LOVE to bowl and the lanes are perfect for them.  Now for the holiday weekend, lots of baseball.  We were at the field from 9:30am to 5pm!  It was hot but we had shade and plenty of cool stuff to drink.  Meaghan had lots of fun playing with her friends again.  Tomorrow is another baseball day, same tournament but a new location.  I have heard that Jimmy is the starting pitcher for tomorrows first game, I don't think I'll sleep well tonight.

Meaghan continues to show that she is getting better.  Mostly I see it in her appetite and stamina.  A few months ago I couldn't imagine being out anywhere with her and look at her now.  She is still taking 3 antibiotics and has to put a stronger emphasis on her therapy and that is how life will be for many months to come.  I have to remind everyone because Meaghan is so much more than what you see on the outside.  Her beautiful face and enchanting smile distract you from her CF.  Before this infection life was different for us but now...  We need a cure.  Daily, Meaghan swallows up to 27 pills, 3 chewables, 4 liquids and uses 16 ounces of a high calorie formula just to survive.  She's 4 years old, her summer should be filled with fun, not therapies and lectures about germs and bad air quality.

Help us make CF stand for Cure Found!

WOW.  What a long time since I posted.  No news is good news.  We have been busy doing lots of things for the past few weeks.  Baseball is still a huge part of our lives and will be through most of July.  Meaghan says she likes going to baseball because she has friends to play with.  It is nice, there are up to 3 other little sisters at the games and most places we play have a playground and lots of space.  Today was the last day of preschool.  Friday is a class picnic but this is it, school's out for summer if you're Meaghan Jaecksch.  Jimmy is very jealous and Jonathan is very excited.  Jonathan is excited because this means that Meaghan isn't the only one who gets to stay at school when we go back in the fall.  Meaghan's favorite thing from the past few weeks has got to be her trip to the aquarium.  We are actually members now so we can go back any time we wish in the next year.  Meaghan and Jonathan want to go every day :)  It's funny because she would also say she loved the fishing trip to Warfield Pond.  No one caught anything but it was great nonetheless.

Meaghan still has an insatiable appetite most days.  She wants desperately to weigh enough to ride in a booster seat.  She wants a sparkly, pink seat to ride in.  What ever works, I love that she eats "real" food now.  It will probably still take a long time to get to 40 pounds since my kids have gotten the gift of great height over easy weight gain.

For now, that's what I remember.

It just didn't look right not to see Meaghan when I opened the page. Today was another great day at preschool.  There are a lot of happy faces in her classroom.  I watched her for a few minutes playing on the playground, she didn't know I was there.  She was all smiles, running, climbing and playing with her friends.  I would have cried if I was all alone, fortunately I had company. She is so much better than anyone hoped she'd be by now.  Maybe it's not that anyone hoped but surely believed she'd be by now.

Her appetite is the best it's been in as long as I can remember.  She has gained about two pounds since her last hospitalization.  As you can see, McDonalds french fries are helping get her there.  She is still a big fan of the healthy foods too but we are having fewer problems getting her to eat foods higher in calories.

I haven't been this happy in months.  I believe more than ever in the power of prayer and true friendship.  Thank you.   

Hello All, I have so much to tell you about, I have to keep it brief though. Meaghan's first day back to school was great. She was a little nervous and shy at first but settled right in by circle time. Her reappearance in class was exciting for everyone. I know she is looking forward to going back tomorrow. In addition to all that good news I got several emails today that really helped to lift me up. First, May is Cystic Fibrosis Awareness Month. There are many ways to share and support and I hope that you might find a few of your own. The best news for the day was the article printed in the Financial Times and the New York Times about Vertex. Vertex is the company doing a lot of the work developing the drugs that go straight to the root of the defect in CF. The article states that patients with Meaghan's specific genome who received the experimental treatments "improvement in lung function far exceeded expectations". This is remarkable news. This couldn't have come at a better time. Like Meaghan's recovery from this infection, more work is ahead for all of us. We are headed in the right direction, help keep the progress moving forward. Support Meaghan thought donations to the Cystic Fibrosis Foundation. Click the link on the right.

Hello.  Today things are still going well following Meaghan's bronc.  She was back to herself right away and she has stayed that way.  Over the weekend the five of us went to Jimmy's baseball game in Glen Burnie.  The last time we played on that field the little kids didn't go but I knew they would love it.  There were four areas with assorted playground equipment and tons of sand.  I could keep one eye on them and the other on the game, it was a good game.  Jimmy's team won so everyone went home happy.  

I just told Meaghan that today I am going to take her to preschool again.  Her reaction was less than I expected so I asked if she wanted to.  She asked me if she was really healthy enough to go back to school.  I said it will probably be just a visit today but I think everyone's ready.  I am still in shock by her lack of enthusiasm.  I think she's a little nervous and will probably be a little shy.  There are only three weeks of school left for Meaghan, I can't believe how much time she has missed.  At least she'll be able to say goodbye to her friends and her teachers for the year.  Most of her class will be back next year too because they all have those too late for kindergarten birthdays.  

I'll update as soon as I can about what happens today.  Now I am nervous too.

Sorry to keep you waiting.  Meaghan's bronchoscopy went very well yesterday.  She was Dr. Mogayzel's first OR Patient in the new children's center building.  Wednesday was the first full day of operation for the new building.  There were a few hiccups along the way but for the Jaecksch's it was a good experience.  Dr. M said that he was very pleased with all the progress that has been made in Meaghan's recovery.  He was able to clear a good amount of mucus that was still in her lungs, along with it went some of the infection too.  We have to wait for the lab results to see how successful the antibiotics have been at killing the bacteria. That could take a week or more.  This time waiting isn't bothering me so much.  The doctor also said that Meaghan doesn't have to be seen right away in clinic.  We don't have to go back until June 4th!  In three months we will do a CT scan to see once more about how clear Meaghan's airways are.  After that we'll see about another bronc, it may be 6 months before doing it!  This was the best news we could have expected.  All that good news comes with the stipulation we keep doing what we've been doing.  All the medicine stays the same, probably for at least 6 more months.  We just have to keep trying to get better and be careful doing it.


The new Children's Center at Johns Hopkins is a very big space. Not as colorful as we hoped it would be, but it was as spacious and comfortable as promised.  Instead of having to ride on the hospital gurney or in a wheel chair Meaghan got to ride to the OR in a wagon.  This was fun, especially since the nurse we had announced Meaghan and her duck coming down the hall with quacks.  For all the anxiety that could have been, getting to the procedure this way made the BEST of a bad situation.


Everything was done in about 45 minutes and we could sit with Meaghan in recovery while she woke up.  As per usual, she took her time waking up.  Once she was awake she quickly got back to the business of being Meaghan.  She ate a popsicle, drank some juice, took her medicine and ate a few saltines.  She never complained about a thing.  No nausea or pain from anywhere.  So we got her dressed and gave her her new shoes.  I think she almost forgot she asked for them.  She was very excited to put them on.  We asked her not to twirl yet, just coming off of anesthesia and all.  The picture does not show the big smile she had on her face because she felt it was taking too long to get out of there.  We had to wait for one more doctor to sign off on her chart and for Jay and I it was taking a long time too.  Since we've been home she wears her shoes and twirls all over the house.  I guess it was worth it :)

Yesterday was one of the easiest days we've had since February.  Meaghan is feeling almost like herself and so am I.  It's time to start reintroducing a "normal" schedule to our lives.  It's time to start seeing our friends again, a little at a time of course.  Meaghan is getting better but I am still going to hover and overprotect a while longer, you understand.