Ok, you're going to laugh.  Meaghan, Jonathan and I just finished doing the grocery shopping.  This is a big deal because I have not done all of my own shopping since Meaghan's first hospitalization.  Thank you to everyone who picked things up for me along the way.  It went VERY well.  It wasn't easy, I had to come back inside twice for things I forgot.  Not to mention, I spent way too much money since both little kids were irresistible when they asked for stuff.  I couldn't forget about Jimmy too.  Next time I'll do better, being where we've been ... what can I say.  I am just so happy, not a big deal for most but this was a big step for me.  I don't know about what's next but today gave me a little confidence.  We are going to start facing the big bad world a little at a time.

Hello.  Today was a baseball double header for the Jaecksch's again.  We won one and lost the other, not a bad day for all.  Meaghan says our home field is her favorite field, I think it's because the french fries at the snack stand.  Today she had to fix up daddy's bruised finger.  We sit on the first base line between two fields and hear "Heads Up!!!" A LOT.  Jason made a few good saves but then he jumped to catch one more  hard hit foul ball and it hit off the end of his finger.  Meaghan helped with the ice and even put a Band Aid on it so her daddy would feel better.  Very sweet.

Tonight we told Meaghan about the bronch coming up on Wednesday and she seems ok with it.  She asked all the questions I expected her to.  I answered them the best I could to satisfy her curiosity.  Then I asked her to think about the "treat" she wanted for doing it.  She asked for new shoes!  Thanks to television she wants Bella Ballerina shoes so she can, "Twirl like a real ballerina".  Jason and I are actually ok with this request, it beats some of the other things she's seen on TV commercials.  We tease that Meaghan is a telemarketers dream come true, but then isn't every four year old.

I am hanging in there too.  I asked a lot of questions this week and understand that Meaghan is getting better a little faster than the doctors expected her to.  They are pleased with her progress and said that they want to get in to her lungs to pull out more of what's left to push her further ahead.  For the first time in months there is a reason to smile.  Meaghan has to continue the medications for a while longer, we don't know how long, to be safe.  But we are so proud of her.  All the therapies, medicines and sacrifice have payed off, her lungs are clearing up.  Thank you, thank God.

Please continue to pray for us, our prayers ARE being answered.

Hi all.  Just a quick note about what's going on.  Today, after 3pm, I got a call about Meaghan's next bronch.  The doctor wanted us to be in the hospital for an outpatient bronch at 11:45am TOMORROW!  After I said about fifty "Um's"  the woman trying to confirm with me asked me to call her back.  I was taken completely off guard, on Monday I got the impression we had a few weeks before Meaghan had to go through  more of this.  Tomorrow was just too soon and no good for us.  Jimmy is home from school, Jason couldn't easily take the day off, what do I do with Jonathan?  I had too many thoughts and excuses running through my head.  Luckily I was convinced that I am not a terrible mom for wanting more notice and time to plan.  So I called back and got Meaghan scheduled for Wednesday May 2nd.  If all goes as planned we'll be in and out the same day.  I have so many questions about exactly what is going to happen, Meaghan is going to want to know.  I'll be with other CF moms tomorrow night, perfect timing.

As always, pray for us.  We are heading in the right direction, we couldn't have gotten this far without all the support, Thank you.  I love every one of you!

That smile says it all.  Meaghan's day was super long but it ended with good news.  First, the CT scan was a breeze.  Then we had lunch in the hospital cafeteria and waited for our turn time to see Dr. Z in clinic.  That was probably the hardest part of Meaghan's day.  We had almost two hours between appointments.  Any of you who know Meaghan know patience isn't one of her star qualities.  I must say, she was on her best behavior, I almost can't believe it myself.  Meaghan took the day on like every other day, Jason and I were so scared we hardly remember getting to the hospital.  So when Dr Z said as she entered the room that Meaghan's lungs looked better, we had to have her repeat it.  There is some mucus and plugging left so another bronc will be scheduled in a few weeks but the point is that the current course is working.  Jason and I couldn't leave the building fast enough, we were afraid they'd change their minds.  Meaghan has to continue on the 3 oral antibiotics she is taking for some time to come.  Once we left the building for good we did a little happy dance and hugged each other tightly.  I feel 6 inches taller, this is the best news that we could have gotten.  Thank you all, all the care you have shared with us, all the prayers, they are being answered.  Meaghan is getting better!!!!!  We still need your support, this infection is not gone, our work isn't over.  Until there is a cure for cystic fibrosis Meaghan fights every day for the rest of her life.

OK.  Here I go feeling all optimistic again.  Since I posted last Meaghan was seen by her regular pediatrician.  We love our pediatrician, she's one of my best friends.  It was the pediatrician who wanted to just put eyes on Meaghan for her own peace of mind.  I am so glad she did.  Meaghan's weight is still holding steady, amazing news given all the gut issues she's been experiencing.  Her lungs sound good to Dr. Najla's ears too.  I am very skeptical whenever any one says that.  Meaghan sounded "good" on  the day that her "BIG" pneumonia was discovered.  Once we get the CT on the 23rd I'll know if "good" means "improved".  We are still working on some behavioral stuff that has come up, we think as a side effect of the medicines.  There is still the matter of building up her stamina and strength too.  But in general everything is going the way we want it to.  

Meaghan had a very busy weekend, in a good way.  Jimmy played in a baseball tournament in Olney Saturday and Sunday.  Saturday was an 11 hr marathon.  It was fantastic, that's not sarcasm.  The park was a great place to spend the day.    While Jimmy played, Meaghan and Jonathan did too.  There were 3 other sisters close to Meaghan's age and they were great company for each other.  Sunday was much shorter.  Still a good day to be in the park.  This morning Meaghan finished putting together her first set of big girl Lego's before I had my first cup of coffee.  I didn't even know she liked Lego's that much or that she could manage a set of big girl Lego's so well.  I sat in amazement (secretly longing for my coffee) while she worked it all out.  The best part was when she was all finished rather that taking them to play with she said, "Can I do it again?".

With all my heart I hope that this week continues the way the weekend ended.  Next Monday seems so far away and sooooo scary.  One day at a time, right?  Thank you for trying to keep up with Meaghan.  Keep praying, I think it's working.

Alright, it happened again.  I let a whole week go by without a post.  Shame on me, I have no good excuse.  There is still no change in our progress.  Meaghan is still sluggish most days and tires out easily.  I have discussed the possibility of doing some lab work to check for problems but the doctors all feel like this is to be expected.  So unless something changes we're going to wait to see the doctors on the 23rd before we draw any blood.  We do have to go back to using a less calorically dense formula overnight to lessen the GI stress on Meaghan.

Other than that...things are the same.  We had a visitor last Friday that brought tons of excitement to our house.  It was a great treat for us all.  Then Easter weekend was spent hunting eggs and hiding candy (from Jonathan).  There is something to be said for keeping a low profile.  Jimmy went back to school on Tuesday so Meaghan and Jonathan are readjusting to having only each other for entertainment.  Meaghan is still busy making tons of arts and crafts projects.  She keeps me busy.  She is very creative and super imaginative.

Lastly, I am keeping good thoughts in mind but trying to be prepared for the worst come the 23rd.  Going into the visit packed and ready for a hospital stay, threatens good thoughts.

 See what I mean, Jimmy and Meaghan are playing with their special Easter prizes and Jonathan went straight for the candy.

 

Today was a good day.  Jimmy has been home for Spring Break all week and today was his last preseason scrimmage.  It was an early game in Savage so the little kids and I were responsible for getting Jimmy there on time.  I am really glad we were there.  Jimmy's team won.  He made a really great catch in right field.  Jimmy pitched the last inning to keep his team ahead 5-0.  There was a nice playground so we stayed for the whole game.  Meaghan did play some but was far too tired for a lot.  I took lots of pictures, it was fun while it lasted.  I have talked to Meaghan's doctors and asked why she is still so sluggish and tires out so easily.  On one hand they aren't surprised, she's still battling a major infection.  But they are interested in doing a detailed blood test to check her little body's response to the treatments.  I am just sick thinking about how much things have changed.  I want my little girl back, I need my little girl back.

Hi.  Last night we took the telescope out to the driveway for the kids to get a look at a special nighttime sky.  That was hard for Jimmy, it's his telescope and we haven't made him share it yet.  Mostly it went well.  The big reason for taking the telescope was that Mars and another bright star were visible near the moon.  It was fun.  The best part was all the excitement from the little kids.  I wish I could remember if it was Meaghan or Jonathan, they were both yelling, but one of them said "I can't believe it, Mars is my favorite planet, I've never seen Mars before!"  You'll never guess why Mars is their favorite planet: because, "It is a planet and a store."  We've been fans of space in our house for a few years and every night now before bed we let the kids go out to look for the stars.  It may only last five minutes but we see lots of fun things.  It might look very strange to the neighbors but we are loving this family time.  Through all the events of the past few months the five of us are closer than ever.

By the way, the boots are "rescue" boots, not because of the rain and the winter hat is a "camera helmet".

OK.  The eye doctor saw Meaghan today and he made me feel better and worse at the same time.  The good news is that Meaghan's eyes and vision check out just fine right now.  The bad (not really bad) news is that the medicine Meaghan is taking to "kill the bug" can in some cases cause damage to the optic nerve at the back of the eye.  The first symptom of the damage is loss in color perception.  Like I said, Meaghan is doing fine and she's been on the medicine for 6 weeks already.  I will take her back to be checked again in 3 months unless we see some change before then.

Other than that the week was pretty uneventful.  I haven't seen much change in her health.  She is the same to me that she has been since the first hospitalization.  All the waiting for more tests to get the information we need to know how successful the therapies have been is enough to make me totally crazy.  That being said, April 23rd is Meaghan's next CT and doctors appointment.  That is the next time I will have any answers.  It feels like forever when I know in reality that time will be here before I know it.

Check out how Meaghan has been relaxing at home.  This is the first time I let her go with the polish.  She did a GREAT job and had so much fun.  Gotta love kids polishes, they wash right off.

                                 

It's been too long since my last post.  The week flew by and spring break has begun.  Tomorrow Meaghan has an appointment with the eye doctor.  I hope that the news is still good.  I will write more about it once we get home.  Thanks for continuing to follow how Meaghan is doing.