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 :)

A Wizard, a Scarecrow, and a Firefighter

Oh my!  This morning things were a little different than our usual routine, each kiddo had an event at their school in which they could come dressed in some sort of costume.  Jack’s school allows them to come dressed in their Halloween costume as long as they do not wear a mask, paint their face, bring a weapon, or have glitter.  That sounded fairly reasonable to me.  Jack dressed up as Harry Potter complete with robe, wand, and lighting bolt scare on his forehead, which by the way is technically not face paint it’s washable marker. 

Megan’s school does not allow the children to come in costume, instead they could come dressed in some sort of “farm attire”.  This prompted some creative thinking on my part and some rummaging through Jack’s old clothes bin to find a “farmerish” looking  shirt, a far cry from the Cinderella costume she wanted to wear.  Megan didn’t want to look too “boyish” so some braids where in order and a little face paint to make her look more like a scarecrow.   That qualifies as farm attire, doesn’t it?

 

Sophie’s school put an even different spin on the NO Halloween costume rule and instead said they could come dressed as their favorite community helper.  She and I had to have a little heart to heart this morning when she got upset over not being able to wear her Sleeping Beauty costume or her witch costume.  How do you explain to a preschooler that princesses and witches are not really community helpers?  We came up with a compromise and dressed her up as a firefighter, complete with overalls (all we had were denim ones) and a firefighter jacket.  We could not find our firefighter hat, which if you saw our playroom you would know why. 

I was impressed with how they all looked, and that I was able to pull it all off by the time they all walked out the door this morning.   Even better they were all very excited to go school and participate in the days activities!  As a mom of many children, I’d just like to say that it would have been a lot easier if they could have all  gone  to school dressed in their Halloween costumes.  At least I would feel a little better about spending all that money on costumes that the kids only wear for one night.  Halloween is so much fun for the kids, but can I just say a little stressful for the parents.  The best part of Halloween as a parent is stealing some.…ok,a lot of candy from the kids trick or treat buckets. 

What did we do today?

A lot of laundry, went to music class, ran an errand, did homework with the kids, allowed Lucy to sleep all afternoon, cleaned the refrigerator,  made dinner, and went to NO medical appointments!  Yes, we had a pretty normal day which we were all grateful for! 

Yesterday morning I took all of the kids to our pediatrician’s office to get their H1N1 vaccine, and apparently so did everyone else.  The office was crowded, but I was reassured that those who were in the waiting room when we were there were not contagious.  It feels like everyone I have spoken to in the last week has either been sick or knows someone who has been sick.  We are hoping and praying that we can stay healthy; because as you know, but the kids don’t, we are planning a BIG surprise for the family in FOUR weeks!

Lucy’s hair has been a topic of several e-mails.  It looks better, but is still full of glue.  We have been using lots of hair conditioner and baby oil, but the glue is stuck to her scalp.  She doesn’t seem bothered by it, it only bothers her when we try to remove it.  As hard as it is for me to not pick at the glue or comb her hair, I am going to leave it alone.  Hats are good, she looks cute in a hat :)