Big Girl Chair!

Mommy and Daddy finally talked to Dr. Gien last night and we decided to increase my Valium and Morphine doses.  Then to help while we wait for that increase to kick in, we also decided to give me two smaller additional doses of phenobarbital to increase the drug in my blood stream and help me calm down.

All of the changes seemed to help outwardly calm down but inwardly I am still struggling with something that is causing my high heart rate.  We will see if over time my new medicine doses help to calm my heart rate down.

My therapist Siobhan stopped by today and dropped off a new chair for me called a tumble form chair.  It is a special chair that allows me to sit in a recline that I feel comfortable with and is soft and cuddles around me.  My nurse Tiffany let me try it out today and I sat in it for almost an hour!

It even helped me cough up some congestion I was holding on to for a while.  I am going to try it every day and get more comfortable sitting up just like a big girl!

Pretty Awful

I have had a pretty awful night and day again today.  Extra doses of medication don't seem to be doing the  trick and my heart rate has been through the roof almost all day.

Usually when Mommy and Daddy get home I am asleep but today was the complete opposite.  I got my normal dose of Valium and Morphine at 6pm and it has been non-stop seizures, heart rate in the 180s and 190s, non-stop suctioning and piles of medications ever since.  It is almost 9pm now and my heart rate has come down a little but I am still awake and having an awful time.  We are waiting to hear from my doctor tonight and see what we can do.  If we don't talk to him Mommy and Daddy might have to play pharmacist.

Mommy got a picture of me for the two seconds I was asleep today.  I don't look so great in the other photo but I was really having a hard time.  My normal snuggle with Mommy didn't even calm me down.

Mean Seizures

I always have a good Monday and for some reason today was really not a good day for me.  I struggled with a lot of secretions and way more seizures than normal and they have been very mean to me!  I had a few extra doses of morphine today to help me but that didn't really seem to help either.

We will talk to Dr. Gien as soon as we can and see if a medicine increase will help.  At this point I need to have something that will help because I was pretty miserable today.

No pictures today since I was having lots of trouble so Mommy found one from a year ago tomorrow!  I was such a little peanut.

Home Alone

Well not really, but Mommy, Brody and Daddy were out of the house last night and I got to spend special time with my nurses Ines, Heather and Tiffany!  Brody spent the night with my great Aunt Marie and Mommy and Daddy spend a night away for their 6th wedding anniversary.

My respiratory distress has been pretty bad the last few days and I am still having some trouble laying on my left side.  I am on a really high concentration of oxygen to keep my stats up which tells Mommy and Daddy that my lungs are probably in pretty bad shape.  We have managed to keep my medications at the same level for a while now but are seeing signs of needing to increase them again.  We will wait it out a few more days to see if there are any improvements.

When Mommy and Daddy got home today I took a nice nap with Daddy and Finnegan.  Brody was sleeping too but I didn't want him sleeping in my bed since he is a very restless sleeper:-)

Happy Girl

I am such a happy girl because Mommy and Brody got home!  The house has been bustling with noise and excitement since they got home late on thursday.  I even got some special presents from Florida!

Mommy bought me a pink Minnie mouse hat and Nana and Pop-Pop got me a cute Minnie Mouse doll!  I've been snuggling with her ever since.  I am waiting for my new Minnie Mouse pajamas to be washed so I can wear those too:)

Mommy and Brody told me all about their fun trip and while I was sad to miss all the fun it would have been hard for me to do all the things they got to do, so I got to look at the pictures and watch the videos instead.

First mommy said they went to the beach with Auntie Dina and her little boy Rhett.  Brody was a little afraid of the ocean because all the pelicans were diving into the water and catching fish!  Boy does that sound neat.

Then they got to go to the Naples Zoo where they saw lots of neat and different animals....like crocodiles!  And, Brody even got to feed the fish with Pop-Pop.

Then they went to Disney World!  One of Nana and Pop-Pop's friend, Mr. Daly wanted to treat Mommy and Brody to a night at Disney so he booked us all a night at the Saratoga Springs Resort and boy did they have a blast!  The pool was so much fun and Brody went down the big water slide all by himself at least 20 times Mommy said.

Then they all went to bed early so they could get up and go right to the Magic Kingdom.  All the rides sounded like so much fun and Brody had such a great time on all the rides, especially the race cars, and even enjoyed all the dancing and singing shows too.  They tried to stay for the Main Street parade but Brody was too tired (along with Mommy, Nana and Pop-Pop!).

Then they had more pool time at Nana and Pop-Pop's before getting back on the airplane to Denver and boy was I glad to see them:-)

It has been a rough few days for me.  I am having trouble keeping my oxygen up and have needed lots of extra doses of morphine and lots and lots of albuterol nebulizers.  We had to get a new oxygen concentrator that goes up to 10 liters/minute to keep up with me.  I don't need that much all the time, but  I have episodes where my oxygen has dropped really low and I need the help.

I have also been coughing up some rust colored mucus which is new.  We will have to keep an eye on that over the next few days.

Me and Mr. Shmoo

Well, last night wasn't too bad, but I finally gave my nurse Joy a pretty hard day.  I have to keep Joy on her toes too ya know; just like Daddy :).  Most of the morning and afternoon I was battling a low-grade fever, high heart rate, and some periods of low oxygen.  Joy gave me some fever medicine and some extra morphine and by late afternoon I was able to finally calm down.  However, it all started again shortly after Daddy got home.  He gave me more fever medicine, valium, extra morphine, albuterol, and hyoscyamine to try and help me.  He thought about throwing in the kitchen sink too, but I'm glad he didn't go through with it :)!  After all that my fever went down and I was able to calm down again.

Tonight I had some troubles again with laying on my left side.  I just can't seem to make up my mind about whether I like it or not these days.  When Daddy put me on my left side I began to breathe heavily, but my heart rate wasn't too bad/high; for me at least; but when nurse Darlene got here and checked me over she heard very little air movement in my left lung.  Daddy decided to move me back to my right side and that seems to have helped.  My heart rate has gone down a bit more and Darlene was able to hear better air movement again.  What can I say? I'm an enigma.  Or at least that's what Daddy calls me.  By the way, can someone please tell me what an enigma is?  I am feeling a bit better now, so I think I'll try and catch a few zzzz's.

Oh yeah, Daddy took my picture today with one of my favorite stuffed animals.......Mr. Shmoo.  Isn't he cute? Night, Night.

Weekend with Daddy

With Mommy and big brother Brody visiting Nana and Pop-Pop in Florida, I got to spent the weekend with Daddy!  Pop-Pop sent Daddy a picture of Mommy and Brody at the Naples Zoo today.  I sure wish that I could have made the trip too.  I miss getting outside.  Hopefully it wll be spring time soon and I can sit out back.  Unfortunately, I was fighting a fever off and on for most of the weekend, which made my heart rate awfully high and Daddy awfully tired.  The fever makes me very uncomforatble and Daddy to give a bunch of tylenol and ibuprofen to bring the fevers under control.  My friend Marsha came over on Saturday evening to watch me so Daddy was able to go out for a while with a couple of friends and grab some dinner.  My fever had gone down at that point and I had a good several hours with Marsha.

Overall I am doing about the same, but I think that I am beginning to breakthough on the current medications I'm taking.  My seizures are becoming more outward and I sometimes shake all over and sometimes  just kinda lock up.  Daddy thinks that we may need to talk with Dr. Gien soon and increase some of the doses.  We're going to see how it goes for a few more days and then decide on what we are going to do.

Today was a pretty good with my Monday Nurse Joy.  I always seem to have good days wth her.  When Daddy got home from work and Joy left, I decided to poop a couple of times just to make Daddy work a little bit more....hahahahaha  I didn't show it, but I was laughing on the inside :).  I am having a few problems this evening, but not too bad.  Lately I have been pretty weak and spitting up the mucus from deep down in my throat is becoming much harder.  We often use albuterol nebulizer treatments to loosen things up and that helps me get the bad stuff out.  Hopefully that works again for me tonight.

I miss my Mommy and Brody, but I hope that they are having a good time in sunny FLA.  Enjoy Disney World Brody. I want a full report when you get back.....and a Mickey Mouse doll too!  Time for sleepies.  Good night.

Au revoir maman et son frère

I had another pretty good night and day today.  Last night started out rough but only because I pooped.  My nurse Beth gave me a few albuterol nebulizer treatments to try and help my respiratory distress which seemed to work because I was able to cough up a bunch of congestion!  After that I fell into a pretty deep sleep until later this morning.

I had a little trouble later this morning with my respiratory distress and my nurse Ines was able to nip that in the behind by moving me around, giving me nebulizers and a steam bath.  That took care of it and I was able to fall fast asleep for most of the afternoon.

Mommy was very busy today running errands, doing laundry and packing.  She and Brody are headed to Naples, Florida tomorrow morning to spend some time in the sun with Nana and Pop-Pop Reed. I will miss them terribly but Daddy will be here with me.

Au revoir Mommy and Brody!

Great Girl

I am shocked to report that I have been a good, no, a great girl the past two days and two nights!!  Mommy and Daddy thought they were going to have to talk to the Dr. last night to see if we could increase medications but I had such a good day that they decided to wait.  It was a good call because last night and again today my nurses both called me a little angel!

I was even able to lay on my left side the past two days so whatever was bothering me earlier in the week must have gotten better.  It has been a busy few days for Mommy so she hasn't been able to take a picture of me but she was able to find a video she took almost a year ago today (2/21/11).  I was just a month old and we still didn't know I was having seizures at this point.  Most of my movements seen in this video were probably related to seizure activity.

Happy Heart Day!

Happy Valentines Day!

I am starting to sound like a broken record...I had another rough night last night.  I needed a few extra doses of morphine and versed last night and was fighting a fever, respiratory distress and lots of outward seizure activity.

Today was a little better but probably because I had such a tough night and I was completely worn out.  I even slept through all the Valentines day celebration going on in the house which really just meant lots of chocolate flying around:-)

I have also not been able to sleep on my left side for the last 24-hrs.  We have tried to lay me on my left side a few times and each time my oxygen drops or my heart rates goes sky high (or both!).  We will see how tonight goes and then probably give Dr. Gien a call tomorrow to see if there is something we can do to help me feel better.