Friday, December 25, 2009

Merry Christmas to Nicole

Surprise, it’s Drew.  After more than a year of blogging from All The Marletts, I am writing my first post.  Hello to all of you I know, and nice to meet all of you I don’t.

Let me start by saying that it is very difficult to surprise Nicole with any gift.  So this year, I decided to give her a gift that I didn’t have to hide.  I love that Nicole blogs.  It keeps us connected with our family and friends, it connects us with new families and makes new friends, it documents our life, which would otherwise blur from day to day in our memories, and I know that Nicole enjoys doing it and feels better after writing a post (sounds strange, but it’s true).

Therefore, this year for Christmas, I decided to get Nicole a blog make-over.  She will be working with a blog designer over the next few months to give the blog a new look.  I am looking forward to seeing the result and I’m sure you will all know when the elves have finished her gift.

Merry Christmas to all, and to all a good night, I’m tired.

Drew

Saturday, December 19, 2009

Let it Snow, Let it Snow, Let it Snow

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It has been snowing since 1:41 am.  How, you wonder, do I know that this is the time it started snowing,  well….I was awake folding laundry and nursing a sick child.  Yes,  Lucy is sick and not sleeping well(that’s putting it mildly). Three of  our kiddos and I have some sort of a runny nose head congestion thing; but Lucy is just miserable and not her normal mostly happy sometimes cranky little self.  Instead she is mostly cranky and sometimes happy.  She started acting “off “on Wednesday morning, by Wednesday night she was down right miserable with a fever, head congestion, and runny nose.  The poor thing could not suck on her binky she was so congested, feel bad for her but feel worse for the rest of us who have live with her not being able to suck her bink.  Thursday morning she woke up(I use the phrase woke up very loosely)and had a 96 degree temperature, autonomic dysfunction is such a baffling thing one hour she is higher than normal and the next hour she is lower than normal .  She was obviously miserable with a thick runny nose and drooling because her oral motor tone was lower than normal, in general Lucy becomes even more hypotonic when she is sick.

November 24 - December 14, 2009 441  (Gross, I know but as a result of her having a runny nose she has discovered her nose holes:)

By Thursday night she was really struggling to swallow, she kept aspirating her saliva.  She would wake every twenty minutes or so coughing from aspiration.  We had already elevated her crib mattresses in an effort to help with her congestion, but honestly we did not know what to do for her aspiration problem.  She and I slept on and off in the rocking chair in the nursery, but it didn’t really help the problem.  She was happier though just being in my arms. 

Friday morning we had therapy and I could tell that she was acting even more “off”, although she did not have a fever she was struggling to balance and drooling even more.   My mothering instinct kicked in and I called our pediatrician who said bring her in, we can never be too cautious when it comes to Lucy.  I know I’ve mentioned this before but it deserves mentioning again, we are so  grateful for our pediatrician and her staff.  Without them I do not believe that we would have diagnosed Lucy as soon as we did.  She trusts my mothering instinct and listens to all our our concerns, trust me when I say this is not a common every day occurrence in the medical world.  Lucy is dealing with some sort of infection, my instinct was right again but I was still hoping she would tell me that it was just viral.  Lucy has thick green drainage in the back of her throat and with her aspiration issue the fear is that she could aspirate this green stuff and get another pneumonia.  She put Lucy on an antibiotic and said to call if anything changes.  Praise antibiotics! Lucy slept better, not great but better, last night than she did the nights before.  Although she is still cranky and not her usual, her nose is not dripping green stuff any more.  She is exhausted, and so am I.

As I write this it is still snowing.  We have been snowed in all day and we looked at this as an opportunity to have some holiday fun.  We baked and decorated some of the most vibrant sugar cookies I have ever seen (see photo below).

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The kids had fun doing it, and we  the parents are still wiping off frosting and vacuuming up colored sugar from our kitchen floor and every where else they walked.   Drew attempted to shovel a path on our driveway just in case of an emergency, lets just hope we have no emergencies tonight as the snow is piled up nearly two feet in some areas.  Jack, Megan, and Sophie played out in the snow for a short period of time today, I think that Sophie broke the record for shortest duration.  After taking longer than twenty minutes to get dressed to go outside, she was back inside crying  in less than five minutes.  You gotta love her, or else you’ll loose your mind. 

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Here’s hoping that Lucy sleeps better tonight, feels better tomorrow, that the snow tapers off so the kids can play outside a little longer tomorrow, and that Drew and that we can shovel out from all of this snow.

Wednesday, December 16, 2009

You’d Better Not Pout…

I have a mountain a literal mountain of laundry to fold, more laundry to do, Christmas shopping to still finish, cards to order and address, a baby who has not slept a decent night in over two months which means I haven’t slept well either,  this same baby seems to have the beginnings of a cold so now we are on “ready and alert” for anything out of the ordinary with her,  an appointment with Lucy’s CHOP nutritionist this afternoon, more appointments to schedule, a son who seems to think that it’s still summer as his hat and gloves are laying on the floor by the door, a first grader who has had a cold for a little over a week now, and three children (four if  you count Lucy’s incessant pointing at the Christmas tree) who are constant reminders that Christmas is only 10 days away or is it nine now!  

I AM looking forward to the upcoming holiday, I just wish at times that the preparation was a little bit easier.  Of course, I really wouldn’t want to have anyone else do these things  for me; except maybe my laundry,well only if they fold it the way that I do:).  I have more posts about our trip that I am working on and am hoping to get them done soon.  Just wanted to share with you some of the things that I have going on right now so that you don’t think we forgot about you.  Last night we took the kids to Longwood Gardens, it was beautiful as always, and a nice  couple took this picture for us.

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Tonight I am looking forward to baking/eating some cookies with my kids.   

Friday, December 11, 2009

It was Like… Magic (Chapter 1)

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It was the Monday before Thanksgiving and we were off to yet another appointment with Lucy’s GI.  It was a very productive appointment in the sense that we discussed some “what if” scenarios with her doc for the first time in Lucy’s life.  For most people, these types of discussions are not what you want to have with your doctor; but for Drew and I it was a relief to hear what his thoughts were.  He shared with us some of the concerns he has for Lucy and what we need to be looking for that could possibly indicate trouble. Lucy’s motility appears to be slowing, but she is continuing to gain. Weight gain is so important and we are going to continue to keep monitoring this.  He agreed to pull her J-tube and have it replaced with a Mic-Key G-button.  We met with the GI nurse practitioner just after her GI appointment and made the switch right there in the office.  After a frantic search for the correct size(she went from an 18fr long tube to a 14fr mic-key for all you G-tube experts out there, mainly because that was the only small size they had in the office), a quick tutorial on how to change her button at home, and assisting Drew from fainting to the ground(he doesn’t do well with anything bloody or seeing someone in pain, God bless him for trying) we were on our way.

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Lucy’s new Mic-Key not to be confused with The Mickey:)

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Tuesday afternoon we could be found at our Pediatrician's office waiting for round two of the H1N1 vaccine.  It is a crazy busy time of year in any pediatricians office, but ours is an independent and she had all of her rooms full with other patients not to mention our room full with our four kiddos.  After waiting for over an hour trying my best to distract the kids from what was about to happen, all four kids took their shot in stride.  I think that only three out of four left in tears, not too bad.  As usual, Lucy reacted with a fever and general irritability afterwards.  I was actually looking forward to the drive the next day because I knew that she would sleep for most of the day.

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The next twenty-four hours were a blur of suitcases, plies of clothes, shoes, medical supplies, strollers, Lucy’s walker and wheelchair, coloring books and craft supplies, DVD’s, hidden surprises for when those desperate times call for serious bribery, snacks, remembering to return all of  the library books(we only forgot to return one), tracking Lucy’s new tube supplies with UPS which incidentally arrived after noon on Wednesday and needed to be reshipped to Disney on Monday, sharing secret glances with my husband who knew that  at any moment I was going to blow it and say something about going to Disney, and all of the other stuff one needs to do in general so that they can leave their house for a week and a half. 

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When I look back on our trip I am in awe of how we were able to plan, organize, pack, and get there and back all without forgetting something or loosing our sanity.  Planning for any time away from home with our family is never easy, but add to that a 1,000 plus mile drive and a week in Disney World and you increase the difficulty by well…a lot!  The weeks of planning, organizing, packing, and secret keeping paid off, it was like…magic how we were able to do it and enjoy it all!  

Monday, December 7, 2009

We’re Back!

We are home, we had an absolutely fabulous time, and we are exhausted!  We had a great vacation and have so many memories that we want to share with you, but for tonight we just wanted to let you know we’re back.

We left that,

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and came home to this!

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