Jonathan's shirt says, "Save time and skip my sister"

This is the best I could do to get them all into one picture

Blah, blah, blah...  I haven't posted in a while.  Mostly because of the holiday.  Like so many, many others we spent the few days before Christmas cramming to be ready for Santa's arrival.  It was all worth it because Christmas for the Jaecksch's was great.  Jimmy was the first to wake up but Meaghan and Jonathan were not far behind.  Jonathan actually needed a little push to get out of bed.  He has never been into opening gifts.  He found the Rescue Bots and stopped opening anything else.  He even disappeared for a while.  He was down in the basement looking for his Optimus Prime Transformer.  He just wanted to assemble his team.  Jimmy and Meaghan tore through their piles and into each new gift in the blink of an eye.  Santa delivered on almost all of their wishes and managed to sneak in a few awesome surprises. Meaghan said with each gift, "This is just what I always wanted!"  And we heard a lot of, "This is the best Christmas, EVER!"  I don't remember smiling so much, my cheeks hurt by 9am.  I am so happy that the kids were all so happy, that is all I have wanted for Christmas for years.

Meaghan built 99% of all of this by herself since Christmas

Anyway, I really wanted to tell you about the new inhaled antibiotic that Meaghan started to treat the pseudomonas infection we just got back, AGAIN.  Where has this technology been all my life.  It delivered on its promise completely.  One treatment is over in 2 minutes or less.  Meaghan breathes relaxed and deeply through the whole treatment.  She does cough once or twice but she has not complained about burning or bad tastes.  The nebulizer runs plugged into the wall or by 4 "AA" batteries without making a sound.  It is SOOO different from anything else we've used to treat or maintain our CF life to date.  That is all that really matters but I do want to share the down side.  Just for me, not for Meaghan, this method is HIGH maintenance.  The refrigerated, powdered medicine has to be mixed with saline at the time it is to be given.  Figuring out how to assemble the medicine cup was a challenge for me.  Not the worst thing, right?  After the treatment has been delivered I have to disassemble the medicine cup and soak it in sterile water and soap (they sent the soap) for at least 10 minutes.  Then I sterilize the cup and parts in a sterilizer they also sent me to use with this set up.  I have to use sterile water to run the sterilizer too.  Then all the parts have to be air dried completely on clean paper towels.  Then I have to find a clean, safe place to store it all till the next treatment.  We do all that 3 times a day in addition to the other therapies and treatments we're already doing.  Like I said, Meaghan's part takes very little time and causes her almost no distress.  I spend at least 1 1/2 hours doing my part.  BUT, I'll take it all if this "kills the mean bug".

My already cramped kitchen could use a little help though.  Between the formula, daily medicines, medicine cups and sterilizer set I can barely use it as a real family kitchen.  But, Jason and I are planning to fix this not so significant problem this summer.  Lots of things have to be decided before then but I can't wait to actually get that project under way.

This was Meaghan's special surprise for her birthday.  Princess Jennifer came, read the kids a story, presented Meaghan the book she read from and had cake with them.  I'm not sure if I shared that with you already but it was on my mind.

Something else is on my mind.  I haven't fully digested it so I don't know what to say.  Today the nurse called from CF clinic.  Meaghan's pseudomonas is back.  The order for the new inhaled therapy is in, it may take a few days to get to the house.  She'll take the antibiotic for 30 days, be off for 14 days then be tested once again to see if it is there still.  We weren't even clear of it for a month!  WHY?????  There must be some way to prevent this bug from getting back into our kids.  Our future looks like a constant 30 days on 30 days off of one or another inhaled antibiotic. I have so much frustration, hurt, anger, fear and deep sadness I can barely finish a thought.  God, please help me.  I want to know what to do.  I want to make it all go away.  Just when I start feeling strong, I lose my breath again.  I know Meaghan is strong, I know she will fight.  I'll be there beside her every step.  Meaghan's health has been good in the past, she does well with the changes we constantly make to her routine.  We have the best doctors and hospital working to make her better.  But right here, right now, I'm drowning.  God, heal my little girl, please, take the pseudomonas away.  Clear her lungs.  Please.

We need a cure to cystic fibrosis.  Scientists are working hard and a cure is on the horizon.  Whenever you can, as much as you can, support the Cystic Fibrosis Foundation.  They are Meaghan and so many other amazing peoples HOPE for a longer, healthier future.  The link to my Great Strides Page is on the right.

God Bless!!

If you've been keeping up with Meaghan, you've been waiting for some answers.  Today during our 3 hour long visit to clinic we learned a lot.  Some good news and some not so good.  I want to share the good news first.  At the appointment on November 21st the throat culture they took came back negative for pseudomonas.  So all the questions I had about whether or not I did the right thing subjecting Meaghan to the hospital stay and IV therapy were answered.  It worked this time.

They took a new swab today, because they have to and also because of all the illness that has been going on in our house.  Today the doctor believes that Meaghan has some viral stuff going on in her upper airways and in her gut too.  He was not comfortable treating any of these things today because of how many medications Meaghan is currently taking and the likelihood that she'll be restarting the nebulized treatment for pseudomonas.  Jason reminded me to take the small victories we are given and congratulate Meaghan for all the hard work she put into getting rid of the "mean bug".  On the car ride home Meaghan said to me, "Yea, 'cause taking all my medicine is easy.  Being CF is hard so I just have to do it."  Yep, she said "being" CF.  I didn't ask, I could barely stomach the talk we were having as it was.  From there she went to spend the afternoon with her friends at preschool.

During the visit the nutritionist came to talk to us because of the weight Meaghan is losing.  We haven't done that since her G-Tube was placed almost 5 years ago.  Many of you who know Meaghan already know that getting Meaghan to eat is our greatest challenge.  It has been ever since her G-Tube was placed.  Don't get me wrong, she NEEDED the surgery, I am not second guessing that decision.  But, she hasn't regained her appetite and we've tried lots of things.  So today we met with the behavior psychologist.  Mostly she couldn't help, we've been practicing a lot of the things she had to suggest at home already.  I did take away one thing to try.  Each day Meaghan is challenged to try one new food item at dinner with the family.  For each "real" taste of new food she earns a sticker to add to her very own new calendar.  After she earns 5 stickers she gets a special reward.  Meaghan is excited about the whole process and she earned a sticker tonight.  She tried (3 licks of the spoon) greek yogurt.  She didn't like it but that isn't the point.

Meaghan toured the Pulmonary Function Testing room today.  She couldn't practice today because she isn't "healthy" enough but we're working in that direction.  It will be very helpful to measure Meaghan's PFT's because she hasn't been a kid to cough or show symptoms of illness, even though she's been very sick.

Lastly, the nurse brought in some new equipment to show us.  Meaghan's old equipment takes up to 30 minutes to deliver one treatment and she has to do them twice a day.  The new equipment and treatment take two minutes and get done three times a day.  The first medication we used has to be spaced 8 hours apart but the new one isn't so time sensitive.  They are equally effective at treating pseudomonas.  So, when we have to start treating her again we're going to try the new option.  There are a few different ways of looking at pseudomonas.  It is the number one cause of permanent lung damage in cystic fibrosis patients.  Early detection and treatment are essential.  Those things my family accepts and agrees with.  Now that we have successfully eradicated it once we want to keep it out.  Realistically, that is highly unlikely.  Some believe we should use the nebulizer treatments daily to stay ahead of the infection.  There are few, if any, side effects with the nebulizer and it could prevent the infection from sticking again.  It sounds simple, right.  She's just five.  I would love to lighten up her load and free up more of her time to play like all the other five year olds she knows.

Reality stinks.    

This has to be one of my favorite things about Meaghan's Princess Party.  The kids all had a turn to "kiss" the frog prince.  It was Meaghan's idea to play the game and a very talented and helpful neighbor (love ya D!) volunteered to draw him.  I plan to have him framed to hang in Meaghan's room, as long as I can find space.

I am all over the board tonight, I have no idea where this will take me.  Meaghan still seems mostly like herself.  She is a little more tired and doesn't want to be bothered to do much unless she is the one who wants it.  It could just be her age but every time she's more tired or off a little bit I can't help going to those dark places.

Jason and I had a short but tearful talk about those places today.  We both deal with this terrible disease in our own way.  I talk all the time, haha.  He doesn't so much.  A lot of the things that cross our minds he chooses not to verbalize, I know he feels uncomfortable when I talk about them but today I was unable to keep them to myself.  What is God's plan for Meaghan?  He can't take away her CF, it is in her genes.  He can stop her suffering, but how?  Will He choose to speed up the search for a cure?  That was Jason's idea.  Will He make this year the year we remember as the really hard one and allow Meaghan to go on for many more healthier years?  Or, will He take her, my beautiful angel, to heaven where CF won't hurt her anymore?  That's where I am right now.  Meaghan looks so beautiful and perfect, she's a little bit of heaven here on earth and what if God wants her back before I can stand it?

I have also been carrying this one around for a while.  I was emailing a friend about holiday plans and admitted that planning with my family was a really difficult thing to do.  I said to her, "We're not the best kind of friends to have."  At the time I meant it, it's what I thought was true.  Through the weeks since then I have thought about taking it back.  We ARE the best kind of friends to have.  We keep it real.  Our life is pretty hard most of the time.  But we are trying in all the ways we know how to remember that each day our family spends together is another gift.  I bet knowing our family is hard.  We live a nightmare most parents cannot imagine.  It is easy to see how people would be shy or scared to get to know us.  I tend to keep people at a distance too.  I want to fill Meaghan's days with love and happiness but I am terrified that the cost to her health will be more than she has.  I want all her days to be with me, I ache when she is away at school.  God saw fit to put this beautiful girl into my life.  He trusts me to take the best care of her.  I pray every day that I am living up to His expectations.  The simple joy and peace I find in living these days is equal to the sadness and fear I feel.

I asked Jason while we were talking this afternoon, "Why doesn't it get easier?"  I've thought ever since that first night with Meaghan that, in time, living this life would get easier.  No one told me it would, but I assumed one day I would come to terms with CF and start living better or happier.  I have watched Meaghan grow up to be 5 years old now, and I don't feel better.  I have faith, I have happiness but I have a BIG lump in my throat still.  How weird is it that a disease that is all about breathing, took the breath right out of me and I will never get it back.

That is all for tonight.  Meaghan will be in clinic on Friday morning for a follow up to the IV therapy we just finished.  We scheduled it for now so that we would have the results before Christmas.  I don't know now if that's the kind of news I want to have for the holidays.  Pray with us that we squashed the pseudomonas and have passed the second MAI test.

God Bless!  

 This has been a crazy few days.  Last Friday I spent the day with my mother-in-law and a few helpful friends wrapping gifts at Barnes and Noble.  It was a great day.  We wrapped a few gifts for shoppers, raised awareness of cystic fibrosis and raised funds to improve and lengthen the lives of those living with this terrible disease.  I met some people with a special connection to someone with CF and one who inspired me and gave me hope.  A 51 year survivor who is 18 years post a double lung transplant.  That was the best part of my day.

Saturday Meaghan celebrated her 5th birthday with friends and family.  I hope to have party pictures to share soon.  Meaghan's special surprise for the day was a visit from a "real" princess.  I think all the kids had a great time.  Meaghan said it was her best birthday ever.  That's all I wanted.

Saturday night was spent at church for the Christmas show.  That was just Jay, Jimmy and I.  Jimmy didn't enjoy it as much as I had hoped he would.  Thankfully there were two boys at our table with a new Lego set to put together.  Sunday Jay and I took Meaghan to Reston, VA for her first Nutcracker experience.  It was put on by the Conservatory Ballet, a group of talented kids from 4 to 17 years old.  They were great.  Meaghan met some of the cast backstage before the show and was even lifted by the Cavalier.  I think she loved it.  It was a little long for her but I am pleased with the way she handled herself.

That is where the good news ends.  Jonathan and Meaghan both came down with a stomach bug.  Jonathan started last night, right after bed.  Meaghan started this morning right after she woke up.  Meaghan was feeling so bad she barely remembered that today was her "real" birthday.  I was so tired after being up all night with Jonathan that it would have been a real struggle to put on a birthday dinner for her anyway.  I just can't believe they're both so sick right now.  Jason, the lucky guy, planned a long time ago to stay home with us today.  Bet he wished he was in the office after all.  Not really, he was super helpful.  I couldn't have made it through today without him.  Meaghan gets a do over on her birthday as soon as she's feeling up to it so Jason may have to celebrate his birthday later too.  It's not like he hasn't been there before.  I feel terrible, I wish I could get a do over.

Well, in the morning I am going to take Meaghan and Jonathan to see their primary care pediatrician and on Friday Meaghan has to be seen in CF clinic again.  This winter can not get out of here fast enough if you ask me.  Thank you for checking in on us again.  We have such a long way to go, one day (one breath) at a time. We haven't heard about the MAI infection status yet and we are being checked again for pseudomonas on Friday.  I wish I had more good news to share but you'll have to wait, just like me, wait wait wait.      

Today was an emotional day for me.  This time of year should be filled with joy and wonder.  Almost five years ago, when I was on pins and needles, waiting to welcome a new baby into our new home, I dreamed of future birthdays and Christmases and they were never like this.  For Meaghan's first Christmas she was still in the NICU.  That Christmas Eve a doctor delivered the diagnosis of CF and gave us an expectancy of 37 years.  Puts a ticking clock in your ear that is just so hard to lose.  But still, every year I try.  I decorate the house, buy lots of presents and pretend that I am happy.

This is a difficult and stressful time of year for a lot of people, we've all got "stuff" in our lives.  No ones future is certain.  But, I wake up every day the mother of a beautiful girl whose future has been shortened because of this horrible disease.  I fight through the depression, anxiety, sadness, anger, worry, fear, doubt and confusion.  I set out to make everyone else happy but what about me?  There are very few people that I can count on to honestly answer that question.  Thank God for Jason.  He is strong and dependable and he proves over and over again that through all these ups and downs I have someone to hold on to.  He cares about me, he works hard to try to make me happy.