Alright!  I give up! Life is getting to be a little more crazy than I am ready for.  Check out our week.

Meaghan was asking to go back to school so I picked her class trip to the aquarium as her first day back.  Everyone is always so excited to see her after a long absence and it can be very overwhelming for her.  So, I thought that if she was in a place she already LOVES and wasn't going to be the main attraction she might be less nervous.  I don't know if nervous is the right word but I hope you understand.  Meaghan has been through so much in a short time and sometimes people (all people) forget that for weeks nurses, doctors, therapists, and a host of other special people have stood over her, poked at her and questioned her relentlessly.  So when she says she is ready to go back to school I think in her mind she believes it will be easier than what she's been doing.  If I dare say so without sounding like I am breaking my arm to pat myself on the back, the aquarium was a great idea.  It brought me to tears when her classmates fell in behind her and followed her with such genuine excitement and joy.  I heard things like, "Meaghan's back!" and "Meaghan is out of the hospital".  That was not intimidating for her and since the aquarium is usually filled with big people she barely noticed the teachers.  It was a great day for Meaghan.

Unfortunately, Jonathan was sick at home.  He started with a cold and has been separated from most of the family for more than 2 days now.  He's breaking my heart.  If any of you know Jonathan at all you know he is full of energy and spunk and is never quiet.  But since Tuesday he has been mopey and sleeping all day long.  Oh, and the biggest difference, he's not eating much.  His fever is gone and his cough seems better but he still has a lot of congestion.  I hope he gets better soon, this has been awful for him.  Then, as if that wasn't enough, the stinker gave it to me.  All day today I coughed and sneezed so Meemaw and Pop Pop came to my rescue again.  Meaghan stayed with them and they took her to school.  She's been doing everything with them so I don't breathe on her and so she doesn't share space and toys that Jonathan has had.  I disinfect and clean every night before bed and wear a mask to go in to Meaghan's room.  This cold can't leave here fast enough.

I wish that was all but there's more.  Jimmy came home from school with a note from the nurse.  He evidently fell and hit the back of his head during recess.  The note said that he needed to be seen by an authorized health care provider so I called his pediatrician's office.  They told me right away that he needed to go to the emergency room.  Yea! An hours long trip to a germ filled ER when I have all this other stuff going on at home.  The good news is that Jimmy is fine.  He has a headache and a small bump but will be feeling better in a day or so.  The bad news, he has to lay off sports for about a week.  We've been telling Jimmy for years, "Stop falling down!"  He falls all the time and nothing good happens when you're on the ground.

Don't get me wrong, I am making it sound big but I know that it could still be so much worse.  I am deep in a tough time right now but I am singing God's praises for the good fortune to have Meaghan well enough to return to "normal" activities and to be home with and for my sick kids.  I love the place I am in, I can't explain it, I wish I could.

Happy Thanksgiving!  We kept things simple today and boy am I glad for that.  Originally we were going to host Thanksgiving dinner here at home this year like so many others.  After we  talked about what it meant the decision to cancel a big family dinner was pretty easy.  Meaghan has been through so much and exposing her to all the people would have been stressful enough, not to mention the germ potential.

Yesterday's visit to clinic was pretty traumatic for all of us.  The doctors talked to Jason and I about keeping or pulling the PICC line.  We decided to pull it because we would be greatly risking her health to keep it for little gain in the success of treating the infection.  One of the two IV antibiotics comes with the risk of hearing loss and renal failure.  We are already being closely followed by an opthamologist because of the risk of damage to her optic nerve from another medicine she needs.  Because you can't live without kidneys and Meaghan will more than likely be using these drugs again in the future we have to limit the length of time we expose her to it.  Just when I think we're getting somewhere some new consequence comes up.  Then I listened while they told us that most likely Meaghan will have to use the inhaled TOBI antibiotic anyway.  The big reason for taking the major step into hospitalization and IV's was to get away/off/over the need for the inhaled antibiotic.  Instead, even if this pseudomonas infection was successfully eradicated by our aggressive attack on it, to prevent future problems with it, Meaghan will cycle on and off treatments at home.  Immediately I started asking why we did all of this.  There is no good answer.  Each patient is different and so is each infection.  We can only do what we think is best at the time we are facing it.  This time they say we've done what we can, the rest is up to God.

I pray to God that I am doing the right things.  I can't explain it but I am at peace, mostly.  God brought this beautiful angel into my life and He graced her with strength and courage for the battles she's faced.  From the night she was born she's fought to live.  Each day for her is a gift.  She greets the morning with an insatiable hunger for growth and knowledge.

If you want to know what I am thankful for today, I would say my family.  That we were together, at home, to share a meal.  More than that, I have to thank Meaghan for how she has tried to teach me to live each day in a positive and fulfilling way.  It is really incredible that someone so young, with such little life experience is the one I look up to.  

There are so many things I am learning through this experience.  Unfortunately, I am learning them all the hard way.  People can not be trusted to do the things they say they'll do.  No one is truly listening. Mistakes will be made.  It is my job to protect Meaghan from these things but she's too smart not to know.  If she isn't right there when it's happening she may overhear me talking about them (venting) later.  As if this terrible disease and it's enormous impact on our family wasn't enough, I have to triple check EVERYTHING.  The frustration I feel over our most recent stay in the hospital is piling up.

I don't really want to go into a lot of detail.  I didn't log on tonight to say any of that.  I want to catch you up on how MEAGHAN is doing.  She is an amazing little girl.  She has been strong and brave.  She has a lot of anxiety and fear too.  I hear her ask frequently, "Will it hurt?" and "That isn't going to hurt, right?"  Don't misunderstand, I am not asking why she does it, I get it.  I reassure her at every turn and explain everything.  When we get to something she really doesn't like she will flat out ignore me or change the subject.  It's like she had coaching on this strategy, she's a pro.  We had the talk already about what might happen in clinic tomorrow.  It's hard to say which would be better, remove the PICC line or change the dressing.  Either way, we'll get through it together.  Jason was already planning on going but when Meaghan asked him tonight he pretended it was her idea.  She is so happy that he'll be there, maybe it will go better.

No matter what happens there is one thing that we are spending a lot of time working on now.  Her 5th birthday!  She told me months ago that she wished to be 5 years old.  She didn't know why but she just wanted to plan ahead.  You may know by now that Meaghan loves the color pink and anything that sparkles.  She knows she isn't a real princess but wants to pretend for that day that she is.  Obviously, Jason and I are doing all we can to ensure she gets her wish.  We aren't going crazy, everything within reason, but I hope it's the party of her dreams and that she remembers it as her best birthday ever.  She has given a lot of thought to how the day should go for everyone.  She made a guest list and looked through books and websites for decorating, snacks and entertainment ideas.  She wants everyone to come play games and win prizes.  Jason made a great suggestion and I am working on making it happen.  It's a secret for now, but if I can make it happen, I'll spill early.

Thank you for continuing to check in on all things Meaghan.  Because of the many well wishes, prayers and support offered to our family we are staying strong, together.

A packet of Get Well Wishes from church

I don't know where to start.  I am sorry that I have left the blog for the past few days.  I really thought that Meaghan and I would come home and just get back to the business of "normal" living.  I felt so different coming home this time (like I was ready), Meaghan was acting like she felt better.  But I felt it (panic) as soon as we opened the van doors in the garage.  Everything was happening too fast.  The home care nurse met us in our living room at around 3pm.  She is a familiar face.  This is the nurse who had the pleasure of changing the PICC dressing in our house when Meaghan peed on me.  I don't think she was happy about being assigned to us again.  That visit took almost two hours.  It was too long.  We had to go over Meaghan's recent health and hospital stay, her extensive med list and administer the first antibiotic.  My mother-in-law planned a dinner for my family so I didn't have to worry about that.  That was the highlight of my day.  A real, delicious, home cooked (mom's) lasagna.  Unfortunately for me, I suddenly realized that I had hooked the wrong medicine to Meaghan.  I hope that I mentioned already that we have to be doing TWO IV antibiotics at home.  I had already done one with the nurse and should have been able to do the second all by my self.  I ran from the table in a complete tizzy.  After I called the 24hr number I knew I needed someone to talk me down.  I called a cousin who had all the knowledge necessary.  It worked and now I have the number to Poison Control on the refrigerator.  A very nice nurse called me back and told me that I had to stop beating myself up, I was not the first person to make this mistake and I would probably not be the last, just that night even.  It was hard to do anything or even sleep the first night home.  Tuesday wasn't a lot better.  It started out well, I had an offer to get Jimmy to the bus stop nice and dry during the rain.  Then I had to get to the business of finding out where Meaghan's new physical therapy machine was.  During our stay I was informed that ours was unsafe.  I was also told that it was being handled for me.  NOT.  Now it's done, what a pain.  Wednesday Meaghan and I met with the home care nurse for the second dressing change.  This nurse was also there when Meaghan peed on me.  That was her first home nursing care experience.  She teased today that she almost changed paths because of that experience.  She and I had high hopes for a successful change today.  We were successful, it was ugly, but it was done.  We have another change ordered for Tuesday then a visit in the CF clinic on Wednesday.  I haven't heard any more about lab results and I don't know for sure how long we have to keep the PICC line and use this course of antibiotics.  There are a lot of you asking how you can help.  I really want to ask for help and visits but for Meaghan, right now we have to lay low.  I love each and every one of you, I couldn't make it through my days without the gentle reminders.  Admittedly, I am overwhelmed, but Jason and his parents are doing everything they can to help get me through this.

It's not a great picture but this is the PICC line.
It is hooked up to one of the abx.  The pink purse
is holding the medicine, pinned to her shirt.  We do this 4 times a day.
That is equal to 2.5 hours.

Just Breathe

 These are the only pictures I took today.  We really didn't do much worthy of pictures today.  This breathing exercise was the most exciting/interesting thing all day.  Otherwise we played games, read books and practiced in our workbooks.  We didn't get to leave the room at all.  Physical therapy came and we played in the bubbles again.  The doctors had very little to say to us this morning.  Just that we will stay the course with the IV's and see what happens.  Of course I am completely thrilled that we are going home tomorrow.  I am very nervous about giving IV medication myself at home, I've done it before so why am I sweating it now?  This PICC line is working beautifully and even seems to stay tucked neatly into her little band when we're not using it.  So I am in a better place than the last time we had a PICC.  Come on Michelle, you can do this.

Meaghan looks great.  She sounds great and is able to do so much.  I thank God for all of that.  All of the prayers for healing and strength are being answered.  My perfect angel is fighting and beating, against the odds, TWO nasty "mean bugs".  From the day she was born she's been proving over and over again that she is here to stay.  She likes to keep it interesting, never a dull moment, but that's just it, Meaghan LOVES a challenge.

Along those lines, among many other things we've tried this week, Meaghan learned to spell our last name.  Now she writes her first and last name on all her works.  That is no small feat, ours is a very difficult name for adults to learn and while she was "sick" in the hospital, she did it!

Ok, check back tomorrow, we should be home.  Who knows what bringing our family back together again will be like.

God Bless

We played "Princess" part of the day,
those were happy times

 I'm just gonna get right to it.  Today stunk.  I wish it was different but here it is.  I had to start a load of wash early this morning.  When I went to switch it I found a baby blanket that does not belong to me and was not there when I started.  We know how wiggy I can be about germs so I was pissed.  The weekend docs rounded and did nothing.  Oh, they are the ones who told me some of Meaghan's cultures came back and it is definitely pseudomonas.  The MAI and fungus results we still have to wait for.  When I told them about the raised itchy rash Meaghan has under her PICC dressing they didn't even look.  Then I found out that Meaghan will be coming home with TWO IV antibiotics to last through November 21st!  She has a clinic appointment that day to remove the PICC.  They couldn't tell me if/when she'll be swabbed again to check to see if our aggressive stance on things worked.  So that means Meaghan will not be returning to school before Thanksgiving.  That was wishful thinking on my part but it would have been nice.  Maybe by the next week I won't feel rushed to try to put her life back on a well kid schedule.

Throughout the day I just felt lonely.  We had no visit from Daddy today.  There were lots of things going on outside the hospital and it just couldn't happen.  For Meaghan's health and safety we can't have visitors.  There is already a mean flu going around and we can not take chances.  So even though a ton of people out there are offering to visit or support us I can't take anyone up on the offer.  In fact, during our day nurses lunch her replacement charged into our room without the required gloves, gown and mask.  My stunned expression wasn't enough, I had to ask her to leave and take all necessary precautions BEFORE touching my daughter.     



Meaghan's food orders are still being messed up so she is left feeling disappointed when the tray arrives.  Luckily she has discovered Honey Nut Cheerios again and canned peaches.  Honey dipped donuts, plain noodles and potato chips sustained her today.  I have talked to the nutritionist, the nurses, the charge nurse, the girl assigned to families on our floor and even the people in charge of the food service.  Everyone wants to help but the situation has not improved at all.  Meaghan's snacks haven't come on a consistent basis or included foods she's even going to eat.  When I place her meal orders things I order aren't there or they are plain wrong.  I don't see the benefit to doing meals this way, we have been responsible for so much waste this stay.


Now, you are seeing these unhappy pictures because late this evening Meaghan was too tired to just let nature takes its course.  She was sure it was going to hurt.  It hasn't yet so I have no idea why now she decided this.  I fought her alone for 5 minutes or so and then Meaghan wanted her nurse.  Her nurse was so not interested in helping.  She asked me two or three times what I wanted her to do.  I wanted her to talk to Meaghan and get her to try to sit on the potty.  So  I had to just excuse her from needing to do anything for us, she was clearly not going to make the difference. I spent better than an hour with Meaghan. These are just a few of the pictures I took of the tantrum she was having.  One day she will surely HATE me for it but tonight I need this.  In the end, the business was done and no one was hurt.  She was so shocked, Mommy was right.  Oh, my future!

It was this little therapy technique that finally got her to relax and sit long enough to get it done.  What's crazy is, oh never mind, the whole thing is crazy.  It was 10pm before she got into bed tonight.  While we were getting into bed our neighbor was having a heated discussion on the phone.  I hoped Meaghan was ignoring it but then she asked me,"Why is that lady mad?"  Once "that lady" chose to use some of the most colorful words Meaghan has ever heard I got the nurse right away.  First, I was worried about Meaghan.  Later I realized, SHE'S A MOTHER!  In her daughter's room!  Language like that is uncalled for and completely unacceptable given our surroundings.  Thankfully our nurse was more inclined to do something this time.  She just got another nurse to go talk to the woman but at least it was done.  The discussion continued but at a more tolerable level.  Meaghan never repeated any four letter words or asked me what they mean so I am hoping that one is behind us.

I think that covers things for today.  It's almost midnight and I want to fake sleeping by the time the nurse comes in to do vitals in a few minutes.  Thanks again to all, love and hugs too.

Today she covered the main floor of the hospital

Hi.  Not much more news to report on tonight.  Today was a lot like yesterday.  We saw doctors, talked about all the things we're still waiting to find out about and did everything asked of us.  This morning Meaghan had another bath and learned that we were going to be staying until Monday.  We are adding one more dose of fiber to her new overnight formula to try to slow down and regulate her.  Until we are in a better place with that we are staying put, she's having a lot of issues.  I want to go home and stay home so I am sticking it out in the hospital until we make Meaghan more comfortable.  Yesterday was better than today in that area.  Come to think of it, in a few others too.  We still do not know what bacteria is growing in her cultures and may not for some time.  Also, we learned that the machine we've been using to run Meaghan's vest isn't safe.  So after carting it to the hospital to use, we can't and have to wait for a new one to come.  What else?  We heard back from the research team that they don't want to pull Meaghan's study labs while she's "sick" so that means we'll have to go through a blood draw sometime soon instead of using the PICC line now.  Meaghan's super sensitive skin is reacting to something under her PICC dressing.  I don't know what to expect from that, I heard, "We'll have to wait and see".  Oh, one more, Meaghan still will not let us remove the monitors they stuck to her skin in the OR 5 days ago.  She is sure it will hurt and wants nothing to do with it.  Even when I tell her that her skin will feel better once those terrible stickers are gone, she flat out refuses.  Soon we'll have to hold her down and get it done.  Just one thing should go right for me, I'm being as patient as I can be.

On the bright side, Daddy came to visit us again.  I really love how much time he has spent coming and going to be with us.  Thank goodness that Meemaw and Pop Pop are there to help with the boys.  I miss them so much.  Jonathan was very unhappy tonight, maybe because I'm still gone, maybe he misses his sister, maybe he's tired or sick.  I wished I could hold him tonight and have all this hospital time behind us.

Ok, last things.  In case you are wondering, the new Childrens Center is nice.  What I heard before coming was all true.  The room is big, bright, clean and has plenty of storage space.  The staff have all been helpful, supportive and friendly.  Our view is nice, not the best on the floor but we get the added excitement of watching the helicopters land and take off.  BUT- The bed is terribly uncomfortable, the light switches are poorly located and don't make any sense, the food is less than reliable and being with the babies and toddlers is noisey 99.9% of the time.  Meaghan is in an isolation room, no one allowed in unless you have "official business" with her.  And, unless it is with physical therapy she can't go out.  So, I haven't seen much of the new center outside the patient room we have, everyone I talk to says it's great.  I'm sure it is, but I don't plan to be back inside for a long time to come.

This weekend will probably feel like an eternity.  The week flew by, but staying till Monday feels like a long time.  By then I hope to be sure that going home means staying home, comfortably.

 I'm fading fast so bear with me.  I'll start with pictures from yesterday.  Meaghan's day started with play time with Mommy and Miss Tiffany (Child Life Specialist).  Since being admitted we discovered a game by Play-Doh called Toy Time Race.  It is really cute and Meaghan just loves to squish her opponents.  That was all leading up to the dreaded PICC line dressing change.  We thought we were ready for a quick, quiet change.  Everyone knew what was going to happen.  This is when I remember what Jason likes to say, "Man plans, God laughs."  Our plan flew right out the window and 7 of us were all doing what we could to keep Meaghan still so as not to lose the PICC line, kick a nurse or contaminate the site.  It was AWFUL!  I had a moment to regroup after the event because Miss Tiffany was helping Meaghan tear up tape.  It was evident to anyone in a 4 floor radius that Meaghan was ANGRY!  Half stripping her bed then tearing tape gave her somewhere to direct the anger.  Within about 30 minutes calm had returned and we could move on to our big goal for the day, winning at BINGO.  I am very sad to report that Meaghan did not win.  She got a prize for playing and that helped make her feel better.  After BINGO it was time for a bath and hair washing.  It has to be done all differently in the hospital.  We can absolutely, positively NOT get the PICC wet!  So I can only wipe her down but this time we got this cool shampoo cap.  A few seconds in the microwave and you have a warm soapy, no rinse solution to regular washing.  It worked out great and I would like to kiss the person responsible.  That really sums up Wednesday for Meaghan.  It wasn't a good day.  Her labs weren't back with any definitive news for us and her belly took a turn for the worse.

Today was far less stressful.  No needles or removing/redressing anything.  The hospital clowns came by her room and had her laughing hysterically.  Her belly seems to have improved a little through the day.  The nutritionist is making another change in formulas tonight so we have to wait and see what tomorrow morning brings.  I did find out today that the lab reported there is some bacteria growing in her cultures.  It is possible that it is pseudomonas.  We still have to wait to know for sure.  I don't know how long and even thinking about it makes my head hurt.

For the first time Meaghan was able to leave her room for physical therapy today.  Once she heard she might, she looked forward to getting out of her room all day.  Daddy came to see her again today.  He brought her her favorite treat, McDonalds french fries. She finished the whole bag in plenty of time to go to the gym.  She made the most of the time she had, she was working with the same therapist who has worked in hospital with her before.  They have a great chemistry and Meaghan adores her.  She had lots of fun jumping on the trampoline and working through an obstacle course.  Afterward the three of us played one Play-Doh game before Daddy had to leave.  I think one of Meaghan's favorite things today was talking on the phone to her brothers.  She and Jimmy did great, Jonathan was another story.  Meaghan had a hard time understanding something he was saying and from my perspective it was like watching a Three Stooges episode.  Jason and I had a good laugh when they were finished.

I guess it is still possible that we come home tomorrow, but it is doubtful.  In order to be sure that the dietary changes we're making are in Meaghan's best interest we need to stay a few more days.  I sincerely hope that when we leave here we just finish our antibiotics at home and make it back to school before Thanksgiving.  Wishful thinking but that is my goal.

Thank you for the continued support.  Hugs.    

 Oh, where do I start.  Yesterday was anything but easy.  Waking up at 4 in the morning to be here on time was the easiest part of the day.  Meaghan was "first case" for her doctor so we did start really close to on time.  The bronch went as planned.  They got in to her lungs, took some really cool pictures, collected their specimens and got out.  That didn't take long but the PICC was a completely different story.  In case you don't know I will write it all down again.  Meaghan had her first PICC line in February.  It was in her left arm.  Then in March when they admitted her again she got a PICC in her right arm.  They can't put a new PICC in a vessel that was that recently used, it isn't safe.  So this time the nurse was not concerned with which arm to use because Meaghan's body had had sufficient time to heal.  What we couldn't have known is that both of the vessels they used for Meaghan's first and second PICCs had closed or become blocked (in protest I'm sure).  So to place her PICC line yesterday the nurse first tried the right arm, then the left, twice, before she was finally able to get through.  The PICC nurse turned all my hair white with the story of her procedure.  The entire time she was talking I felt like she was only trying to soften the blow.  My imagination was running wild.  I was sure from the way she avoided telling me where she placed Meaghan's PICC that I would hear that she had to shave her head and put it there.  She didn't, it is in her left arm, just a different vessel.  Her IV was in her foot!  Jason and I didn't get to be with Meaghan again until after 10am.  She woke up alright and we were moved to her room by lunch time.  The poor thing was miserable!  All the poking and prodding caused her so much discomfort.  For the better part of the day we just tried to get her settled.  There was a lot of crying, some screaming, tons of anger and she was just Miss Disagreeable until 7pm or so.  Once she was cleaned up she got out of bed to check out this really cool machine in person.  The picture does not do it justice.  There is a tube with water and balls, bubbles and small toys that float up and drift back down.  It hums nicely and then there's the projector show and "spaghetti" lights she can play with too.  She has the power to control the color inside the tube with a remote.  Everyone who came to our room stopped to stare at it a while, it sucks you right in.

Today was a little of the same story.  Lots of waiting, a little less pain and crying.  We did have to do a finger stick this morning and they are always very stressful.  But it was the last one, every other has been checked with blood from her PICC line.  We were able to take her IV out (the one in her foot).  That took a while, removing the ridiculous amounts of tape is a delicate process.  That one had to go.  She could barely stand and walk while it was there and it was painful throughout most of her infusions.  She feels much better now that that one is out.  She's still wearing the sticky pads from the OR monitors, I guess we have time to work on those.  Tomorrow will be quite possibly the best and worst day that we're here.  The best day because it's BINGO day.  The best time to be in the hospital.  The worst because it's time to change the dressing on her PICC line.  I don't know if this is in one of my older posts but OMG, they SUCK!  It takes five people to get it all done.  One of the times we had it done at home Meaghan peed on me!  Right in my lap!  We got through it and somehow we'll get through this one too.

I am really sorry that I left you all hanging.  I had all that going on and I couldn't get the laptop connected to the internet until now.  There were so many doctors in and out of our room between yesterday and today but unfortunately I still don't know much.  We have to wait for labs from blood, lungs and stools.  We're playing around with a dietary plan to get Meaghan back on a regular schedule.  We have to work on respiratory and physical therapy schedules.  We are doing a lot of hurry up and wait.  Meaghan has spent some time working on the things we brought from home (and you).  I really appreciate all of it.  Her mind is busy and her room looks beautiful.

We have to wait and see, but maybe we'll be home on Friday!  No promises.

God Bless.  

Hello All.  Thank you to everyone for the outpouring of support this weekend.  It was a really great weekend.  Mostly because we were all together.  It was COLD!  Really cold, especially Saturday.  Not the kind of weather you think of when you think baseball.  At any rate, the kids had a blast.  The Renegades went 2 and 1 in the tournament.  Not well enough to advance but we are proud of them all.  Meaghan and Jonathan were busy bonding with the other siblings on the team.  It is so great that there are kids for them to play with while Jimmy plays ball.  I am getting to watch more of Jimmy playing not having to be entertainer too.  A funny thing happened Saturday night.  We decided to go to a chinese restaurant for dinner.  No big deal, but while we were getting ready to leave I looked back at a large group and spotted a CF parent I know.  Turns out we were only about 10 minutes from her house and she and her family frequent that restaurant.  I have a harder time running into people I live across the street from (love ya MAMA).

I spent most of today feeling really busy and not getting a whole lot done.  Lots of laundry got done.  Sometimes that feels like the only thing I ever get done.  Meaghan helped me pick out the things she thinks she needs to be comfortable this week.  Her focus was on books, crafts and friends.  She knows I'll take care of the rest I guess.  Thanks to some very generous friends already Meaghan has new things to explore while we're away this week. 

Ok, I have to get off of here now.  We have to be out the door before 5am.  I still have to pack.  Meaghan is first case for Dr. Z tomorrow.  I hope to be able to share a little by lunch time tomorrow.  No promises.  You will be hearing from me, lots, so check back often.

From the bottom of my heart, thank you! 

I am sitting on my kitchen floor at almost 1 am writing tonight.  I just can not turn off my brain. I wish I could get the Halloween picture of the kids on here but I am lucky I even got a picture on here at all. I have never been successful getting pictures on the blog from my iPad.

Anyway, today was Meaghan's last day in school for who knows how long. I spent the day with her, it was awesome. I read to the class from a book written from a child's perspective about CF.  I think they all liked it. Meaghan chose the snack for today, Doritos and powdered donuts. She also shared with the class her love for half and half in place of plain milk.  I don't think anyone else liked it but Meaghan cleaned up! Then we took a class picture to hang in her hospital room next week and Meaghan gave each classmate a goodie bag we made for them.  I held it all together, it was ok.

But tonight, I am slowly going crazy. I have so many things to get ready for and I wish I had written them down before my brain turned to mush. Tomorrow is a special trip to the aquarium in Baltimore. If you've read any of the blog by now you know it is one of Meaghan's favorite places. Since we have no idea what the future holds, I have to get her back there one more time.  Then tomorrow night we are heading up to Aberdeen for Jimmy's last baseball games of the fall season.  He is so excited, he's playing at Ripkin.  The tournament starts early on Saturday and goes through Sunday.  So that we could all be together and get enough sleep and still manage to do all of Meaghan's treatments we decided it would be easier to rent a room.  So I am really behind in being ready (as I'm gonna be) for what's about to happen.

I'm scared. That's it, I feel it all swelling in my chest. I need to be with my daughter but I will miss my boys and I'm afraid that they'll resent me for not being with them. My head says I'm crazy but my heart...  I HATE what's going on, I need to make it all go away.

I'm done, after a long pause and a chat with God, I'm back!  Goodnight, hugs.