A little of this and a little of that…

On Friday night our family of six celebrated Thanksgiving, aka Thanksgiving Jr. according to Jack or Thanksgiving practice according to Sophie,  with all of our usual favorites plus a few extras.  The kids realized that because we will be at my sister’s for Thanksgiving I was not going to be cooking all of the food.  This caused quite a stir in our house since it is our family tradition to stay in our pajamas on Thanksgiving and make a lot of yummy foods and a great big mess in our kitchen.  I love that the kids look forward to certain traditions, I myself am a bit of a traditionalist just ask my family.  However if you do ask them, they may choose to use other words to describe my love of tradition.  I shopped, cooked, and prepped for our pre Thanksgiving all week.  On Friday afternoon Drew came home at 3:30 and put the turkey in the oven, since I was at DuPont with Lucy.  When I came home I changed into my pajamas and we set to work on making a lot of food and a gigantic mess of our kitchen.  When all was said and done we sat down for dinner at 7:45; better late than never, but hey we were a week early.  One of the best things about Thanksgiving… all of the leftovers.

Friday was a day of feasts, Sophie had her Thanksgiving friendship feast and play at preschool.  She was dressed as a pilgrim girl and recited the line  “I am thankful that we finally reached land, we named a big rock Plymouth rock, after all we came from England.”  She tweaked the wording towards the end but she was great!  We weren’t really worried, this is our girl who knows all the words to Taylor Swifts “Juliet”.  I know, I know those lyrics are not very appropriate for a four year old, what can I say the girl has an uncanny knack for saying the inappropriate. 

Lucy’s new AFOs fit her well, but that little stinker would not take a step in them.  She stood in her walker just looking down at her feet.  She was more engrossed with the design and pulling on and off the Velcro than actually walking.  I took her to the shoe store after we left the hospital to try and find a pair of lightweight shoes that will fit with her orthotics. We found an adorable pair of Mary Jane mini shoes from Robeeze that had butterflies on them. Lucy’s actual shoe size is a size two, I had to buy her a size four to fit with her new butterfly legs.  They should fit for a while:)

I finally took a few minutes for myself this weekend and got my haircut.  The last time I had this done was in March, we’ve  been a little busy around here.  You know it’s time to get it cut when your husband starts telling you when he can watch the kids so that you can go to the salon.  I had all of the kids hair cut on Wednesday afternoon including Lucy.   They all look so cute and clean cut,  this is the first step towards getting the perfect photos for the holidays. 

Lucy has an appointment with her GI doc this morning and an appointment with the G-tube nurse practitioner.  We are going to discuss increasing her reflux meds, feeding rat, and switching her GJ-tube to a Mic-Key button.  Her current tube is leaking, not enough to worry about her loosing her feeds but it is constant drip and very stinky. I have been sporting a wet spot on my right side everyday for the last week or so.  Oh the things we have to deal with, really it’s a small price to pay for Lucy’s life.      

Where has the time gone?

We’re still here, we’ve just been a little busy living life these past few weeks.  We have been appointment free for the last 18 days!  That is the longest break from the medical world we have had in over a year!  These last few weeks have been a much needed break for all of us!  Health wise we are all “healthy” including Lucy, somebody please knock on wood or something like that.  Lucy is having difficulties with her tube leaking , tolerating her feeding rate, and cutting eye teeth; all of these add up to some pretty wicked nights of no sleep, but she is “healthy”!  I am happy to report that all but one of her eye teeth have come in, so I do believe that there is an end in sight; tonight would be great for me Lucy girl.  As for her tube leaking, we are going to have it replaced on Monday.  Our hope is to have a Mic-Key button placed which is a low profile button that has a connector tube that locks in when in use and comes off when not in use.  Right now Lucy has a very long flexible tube that hangs 8 inches from her belly, she can literally trip over it.  We will have to see what her GI doctor has to say on Monday, but I am going to do my best to persuade him to allow this for Lucy.  Feeding rate, well that’s been a year long battle, can you believe that it was a year ago that we started her on enteral feeding?  If I had to guess,I think that Lucy’s reflux medicine needs to be adjusted.  She is waking frequently after falling asleep, this pattern was what she used to do before going on a reflux med.  I’ve said it before, it is difficult to decipher what is ailing her at any one moment, but we are getting better.

On Friday Lucy will be getting a brand new pair of articulating AFOs with butterflies and pink Velcro, these are orthotic leg braces that will bend at the ankle.  Right now Lucy has SMO orthotics which support her ankles.  She was casted for her AFOs at the end of October after her neurologist observed her gait and agreed with Lucy’s PT that AFOs are the way to go with her.  Lucy hyper extends her knees and clenches her toes all in an effort to help her balance, all of this extra exertion of energy is not good for Lucy’s muscles.  One of our main concerns with getting her articulating AFO’s is the extra weight on her legs, any extra weight just acts like anchors.  Just the other day she tried on a winter coat which had a little bulk to it, she just stood there swaying back and forth for a few seconds until she fell down on her bottom.  She looked cute in the coat, but cute literally only goes so far. 

We started Lucy on Levocarnator, it is another supplement in the mito cocktail that is said to help assist mitochondrial function. One of the side effects of this medicine is “fishy”smelling diapers.  Oh just when you thought dirty diapers couldn’t get any worse, they do!  Lucy’s newest sign is the the sign for P.U. , even she understood the need for this sign.

We are getting ready for our “big trip” next week.  I still have a lot of planning and organizing to do, but it is not taking away from our excitement.  Drew and I have been sharing secret glances at one another whenever the kids talk about going to Florida.  They have each asked if we can go to Disney World while we are down there.  Our response has been, “wouldn’t that be fun?”  They are thrilled to be able to spend Thanksgiving with our extended family, so we can’t wait to see the look on their faces when we tell them that we are going to be spending a week at “The Happiest Place on Earth”. 

Before we leave, all of our kiddos will be getting their H1N1 booster shot on Tuesday.  Knowing that they have protection from this illness gives us peace of mind.  Keeping everyone healthy is in all of our best interests but especially Lucy’s. I have to applaud our kids with their hand washing efforts, they have been giving it their best! 

This is getting to be rather long and I am wiped.  I’ll leave you with a picture of this little sunshine.

Smile :)

Do you Notice anything different about Megan, besides the fact that she is not wearing her glasses?

Now do you notice anything different ?

This little lovey lost her first top tooth on Sunday morning and another bottom tooth on Monday evening.  The tooth fairy lost $2.00, that is the going rate for two lost  teeth in the Marlett house.

Teeth is the reoccurring theme in our lives right now. Megan is loosing teeth, Lucy is cutting teeth (we hope), all of us recently had our teeth cleaned and I am happy to report no cavities,  and Sophie is trying her darndest to stay awake to meet the tooth fairy. 

An Inspiration

Last year we were blessed to meet a family in the hospital whose son had mitochondrial disease.  It was obvious from the moment we met this family that they had a familiarity with the hospital environment that was comfortable to them, but to most is unfamiliar.  We were in the beginning of our search for answers and they were in the midst of fighting an uphill battle with this baffling disease.  Although they were living a life most of us could not ever imagine, they were living their lives as a family inside the walls of the hospital.  Karen reached out to me and shared with me a little about their situation.  She and I discussed our circumstances while Lucy fussed in my arms, she was the first person to tell me about mitochondrial disease.  Though our situations are very different , many of Lucy’s symptoms were strangely familiar to Karen.  I never imagined that one year later we would learn that our Lucy is battling the same disease.   Gavin’s situation and his fighting spirit have giving us perspective.  The way the Owens family choose to live their lives as a family with two beautiful children, seeing beyond the illness, is an inspiration.  Today the earth is loosing a little hero…go in peace little Gavin.

www.gavinowens.com

Trick or Treat

What do you get when you have one Wizard, two Cinderella's, a Sleeping Beauty, six pumpkins, and one Brett Favre…Halloween at our house! 

Add to that one little doggie, princess Mulan, a rock star, and one adorable ladybug and you get…. a whole lot of trick or treaters!

The night before we had pizza and played games.

Lucy and Abby were wise and stayed out of the way, but not without taking some of the fun with them.

This year Halloween was humid with rain off and on.  The festivities came to a quick end when the skies opened up which caused the rock star to skip a beat, dissolved the magic from Harry’s wand, and soaked most of the royal kingdom, part of the insect world, and mans best friend.  As for Brett,he should have retired minutes earlier to avoid all the rain.

 

Happy Halloween!

Today is My Day!

All those times I have wished for more time in a day, well…today is that day.  It is officially 12:00AM and I just remembered that day light savings begins NOW!  Don’t forget to set your clocks back.   I’ll write more later, right now I am going to bed.  Good night :)