Time will tell

Mommy and Daddy talked to Dr. Gien last night and we are adding back an old friend to my medication repertoire...Versed.   It didn't seem to work a few months ago but we are going to increase the dose and try it again.  Last night it helped bring my heart rate down but didn't totally stop the seizures or put me to sleep.

Today it was really difficult to tell if the Versed was helping because I had two huge poops and that always stresses me out.  I was awake for a while today and my brother Finny was helping my nurse to watch over me...

This evening I was calm with a low heart rate, awake, and only having mild seizures.  I fell asleep after my 6pm Valium and have been asleep ever since.  I think the Versed may be helping but we will know for sure in a day or so. 

In the moment

We have been without a computer the last few week so it has been too tough for Mommy to post, but hopefully we will be back up and running soon!  Mommy has learned her lesson the hard way and will be backing things up (maybe a few different ways) on a regular basis.

It seems like things are going wrong in every way the last week - first the computer and then me.  We increased all my medications which hasn't really helped me at all.  Mommy and Daddy will talk to the Dr. again tonight to see what we will do next.  I have a feeling we will be visiting the hospital again for some tests.  Either that or maybe Mommy can learn to draw blood!  We need aunt Sue or Nana Shea out here:-)

I am resting comfortably now but it is probably just because I am so exhausted from today.

I fell asleep late this afternoon with my hand near my mouth and Mommy thought it was really cute.  I don't suck my thumb or put anything near my mouth so we though it was a good idea to capture this moment. 

Someone told Mommy that the true nature of love, is to love your life as it is at this very moment.  It is a struggle everyday to live by those words but, we are learning to try.  I know I will not live as long as most people and the doctors didn't expect me to make it this far.  So, we are all trying to appreciate and live every moment no matter what that moment throws at us. 

We have such wonderful and caring people around us, and I especially love all my nurse who have really become part of our family.  My newest nurse Heather brought us the sweetest gift tonight for our Christmas tree.  It made us all a little teary eyed.

Flip-Flopped

Mommy and Daddy seem to think I have my days and nights flip-flopped.  The past few nights I have been awake and uncomfortable.  It took me a long time to fall asleep last night and I was up having seizures and respiratory distress for most the night.  Mommy gave me an early morning bath hoping that would help followed by my exercises.  The steam helped clear me up and my exercises wore me out! 

I barely made it through all my stretching and joint compressions I was so tired.  The little massages mixed in also didn't help with me trying to stay awake.  Shortly afterwards I passed out on my back so Mommy decided to let me lay on the couch this morning while she straightened up my room.  I slept on the couch for a long time - my hair even dried all fuzzy so Mommy decided to take a photo.

I started to wake up a little bit ago so Mommy and Daddy moved me back to my nice clean room and I fell back asleep in my crib with my Dolly.

When I have really rough episodes I usually spend the next 12 or more hours sleeping.  They say having seizures is like running a marathon.  My joints get very stiff and I just get worn out that is why I love stretching and massage so much and that is why I sleep a lot, only waking up to poop, cough up congestion or have more seizures. 

It is rough but I am one tough cookie!  My oxygen has been dropping off rapidly the last week so Mommy and Daddy have their eye on that.

Well, it is official, Mommy's computer has crashed.  Good news is that her hard drive was kind-of-still under warranty (with the bat of her elashes at least....). Bad new is that she never backed up her files, which turned out to be half the price of a new Mac laptop.  Looks like Santa will be bringing us a portable hard drive this year:-) 

The past few days have been very difficult on us all!  Mommy and Daddy talked to Dr. Gien on Thursday night and we increase all my medications again.  It seemed to work for me Thursday night and Friday, but boy did I have a rough night on Friday!  I woke up around 5pm and the seizures started and didn't stop until almost 11pm.  Mommy and Daddy must have suctioned me every 5 minutes because I was coughing and choking for almost five hours straight.  They gave me every medication under the sun and even spoke to the doctor who told them to give me some meds a little closer together and earlier than normal.

Nothing seemed to help but eventually I got so worn out that I finally fell asleep.  I pretty much slept most the night except for a few episodes.  Today, my brother got to go meet Santa Claus and tell him what he wanted for Christmas. 

Since I couldn't go, he gave Santa my list and told him I've been a very good girl this year.  I'll be waiting for the big pile of presents under the tree Santa.

Then we all decorated the house for Christmas!  We put up the Christmas tree and got to listen to some Christmas music for a change.  We are always listening to Dave Matthews since my brother is obsessed, but he let us put a few Christmas CDson for a few hours to get into the holiday spirit. 

I was going to join in with the decorating but Mommy didn't want to wake me since I was snoozing in my room and catching up on feedings that I hadn't been able to keep down the last few days.  Mommy did however dress me and my furry brother Finnegan up in some festive outfits.  Neither one of us liked it mucch!

Mohawk

Mommy's computer broke so we were not able to post last night:-(  I thought Apple's were not supposed to break....We are hoping that all our family pictures were not lost.  Mommy has an appointment at the Apple store tomorrow and are keeping our finger's crossed.

Well, I had a pretty rough night last night and day today.  My medincines don't seem to be keeping my seizures at bay anymore and we are going to talk to Dr. Gien tonight to see what we need to do.  I have been having episodes last a few hours where my seizures are very active and it just escalates my respiratory distress and my hear rate is super high.  We try and do all the tricks in our bag and give me all the medications I am allowed to take and nothing seems to help. 

My nurse Tiffany sent Mommy the picture below.  I took my bath this morning (it wase a messy one since I decided to poop in the tub!) and fell asleep before I could get a hair brush!  We all thought my mohawk was cute:-)

Music Girl

I've had two quiet days mixed in with some difficult nights.  I've been sleeping a lot during the day and when I am awake, I am working on coughing up congestion.  My tough times are just around 8 or 9pm and it has been taking me a long time to get comfortable enough to fall asleep.

I've also been having a few strange dips in my oxygen where we can't seem to keep my saturation numbers up no matter how high we turn up the oxygen.  Today my nurse tried taking away my mask and using the nasal cannula's and that worked for a little bit.  This evening Mommy thought it was bothering me so she cut the little prongs a bit too short and now it won't stay in my nose....we may have to go back to the mask.

My new room has lots of new ways for me to listen to music which I am really enjoying!  I love my swimming fishy, my mobile and some great lullaby CD's.  They have been very helpful in getting me to calm down!  I am really enjoying my new space which is much more calming and everything I need is right here.

Sleepy

I am sleeping in this morning with Mommy, Daddy and Oinky.  I was a great girl last night for my nurse plus no fever:-)  let's hope that stays.

Quiet

I had a reeeeaaallllyyy rough night last night.  Daddy even had to help when my night nurse Heather tried for a while to get me to relax.  I was coughing up a bunch of congestion and we couldn't get my fever under control again.  Finally after a long time, I fell asleep.  I was so exhausted from all the seizures and respiratory distress that I slept, and slept and slept until almost 1pm.

Mommy was so afraid to move me since I was so peaceful that she waited that long to change my diaper!  I woke up and got changed, and coughed up a bunch of congestion.  See if you can guess what is missing from the following photo....

My TUBE!  I even got to spend two hours without my tube.  It feels so great not to have that thing down my throat and taped to my face.  Mommy and Daddy felt so awful because I had a tear in my eye when they were putting it back in:-(  I've had it in since I was one day old so I'm getting used to it by now.

The house has been so quiet this afternoon because my brother is not here.  He is up at Uncle John's and Aunt Marie's house since Mommy and Daddy are going to a work party!!  My nurse Heather is here to take care of me tonight and lets hope it is easier than last night.

Still sick

Last night was another battle.  I was even awake early this morning when my night nurse Beth was leaving and that is very unusual for me.  Mommy gave me an albuterol nebulizer and that seemed to help me along with my 6am Valium dose and I was able to fall back asleep, but unfortunately Mommy just stayed up and got ready for work.

Today was much of the same.  I am battling a fever that has a hard time going down, lots of secretions and all this seems to make my seizures 10 times worse.  My day nurse Ines was trying to get me to calm down for a few hours this afternoon and nothing seemed to help.  Mommy got home with my brother and I was just settling down probably because I was so tired from my afternoon.

I slept for a few hours at least and as we are writing this I am starting to have lots of trouble again.  I think it is going to be another rough night.

Cold

Not just outside, but I think I am getting a cold!!  Mommy, Daddy and Brody have all been battling a bad cold and I think it has moved to me now.  I had a really rough night and was awake having seizures and needing lots of suctioning,  My nurse had to give me morphine three times and that provided little relief for my respirations.

Today was pretty much the same.  My steam bath and a few nebulizers seemed to help me but overall I was awake and uncomfortable a lot.  I am also battling a fever too.

Mommy got home and gave me another nebulizer and that helped me fall asleep just in time for dinner.

Mommy even got to get a few tripod shots of Finnegan and Brody!  My brother's two favorite things now are "playing" the guitar and making race tracks with his train tracks.