Saint Faustina

Today my brother Brody blessed me (with the help of Mommy and Daddy) with a holy card of Saint Sister Faustina that was given to me by my Great Aunt Mar.  Her friends traveled to Poland and brought back a relic of St. Faustina and they pray for me along with my Great Aunt.  I can't tell you how blessed I feel to have so many people who I have never met praying for me and sending me beautiful messages.  I truly feel loved.

The last few days have been really hard on me.  Mommy decided not to post yesterday because I was struggling for each breath and we were battling a persistent fever.  But...today was a whole new day.  Mommy and Daddy woke up this morning to me in my room with just a diaper on and a cold cloth on my head.  We thought it was going to be another rough day, but we were all wrong.

At exactly 11am, Mommy got a text from my nurse Ines saying "Now, temp is 97.3, after her bath.  She coughed up thick secretions and is sleeping well.  Vital signs are great :-)"  That made everyone's day and the rest of the day was more of the same.  I'm still coughing up a large amount of thick secretions, but my fever is gone and I have moments of peaceful sleeping instead of struggling to breath.  Fighter is an underestimation!

My furry brother has been by my side all day.  Hopefully not just because we fired up the humidifier again (he is obsessed with water) or the fact that the oxygen concentrator gives off he (he is also obsessed with heat), but because he loves me!

Let's hope tonight, I get to rest peacefully.  My heart rate is lower than it has been all week, so it looks like I am one tough chick who can take on any illness that is thrown at me!

Speedlight

I think Mommy is still recovering from all the Christmas festivities because said she was too tired to do a blog post with me last night!  I've had a quieter than normal few days but I think I am trying to sleep as much as I can because I am trying to fight off a fever. The last two or three days I have went from having a low grade fever to almost 102F today.   Tylenol and Motrin have been helping keep the fever down but we did have to use some cold rags today in addition to the fever reducers.

I have also been enjoying my Christmas presents.  I got lots of snuggly blankets and stuffed animals but I also got lots of new musical toys.  Daddy bought more batteries so now I have my new musical/lights mobile for my crib.  It plays all kinds of music - my favorite is lullaby's - and it even puts on a light show which my brother really enjoys!  Mommy has been figuring out how to use her new speedlight (fancy camera flash) without reading the manual....maybe she will get time for that this weekend.  For now, we will experiment.

I also got a beautiful candle angel that comes on every day at 5pm!  It is especially pretty if we turn out all the lights.  I even got a new girly crib skirt and crib sheet but Mommy just did laundry so we will take a picture of that later this week.

Hopefully my angel helps keep me strong so I can fight off this illness.  I am having labored breathing right now but still managing to stay asleep.

Merry Day after

It was another rough 1st half of the night last night (poop Daddy) and I was probably just so worn out that I slept from just about 1am until almost noon again.  I gave my nurse Joy a tough time today and was up with seizures and secretions for a while after my bath and then it happened....I had another big poop that went through my boppy and even got my sheets, blankets and mattress pad all messy.  Mommy had a huge pile of soaking and scrubbing!

I finally calmed down for a while after that and relaxed in my crib.  I woke up again with minor respiratory distress and coughed up a big glob of congestion and that seemed to relax me back to sleep.  I even got to see my great Uncle John and Aunt Marie today.  They brought me a beautiful angel that lights up at night and a snuggly reindeer.  Daddy thought he should be called Rudolf because he had a red nose, but his tag said he was named Comet, so we ripped off his tag and I named him Rudy!

My brother was playing like a maniac with all his new toys.  It has been a fun few days but now we are all tired from the excitement.

Merry Merry!

I had a pretty rough day today but we still managed to have a wonderful Christmas.  Brody was up early and I decided to sleep in since I was up pretty late last night.  Everyone had already opened their gifts and I woke up around 11 and Brody helped me open my gifts.

Thank you for all the wonderful presents!  I was up most the afternoon which made it very difficult on Mommy and Daddy to get their Christmas dinner cooked, but we got it done and everything smelled wonderful. I was still having issues after dinner so Mommy decided to give me a steam bath and Daddy lotioned me and we did my exercises together.  I calmed down for a little bit, but as soon as Daddy started my feeding I woke up and am now having high heart rate and oxygen saturation issues along with lots of seizures.  Let's hope I have a good evening.

I hope everyone got all the things on their wish list.  Merry Christmas.

Merry Christmas Eve

I had a wonderful day today.  I think I was catching up on all my lost sleep because this morning I slept till 11am and then got a nice steam bath.

Then I got all dressed in my new comfy Christmas outfit that Aunt Kris and Uncle Pat bought me and I was so worn out from my bath and my exercises that I fell asleep again.  And slept and slept and slept.

I slept through cookie making, I slept through dinner and I even slept through present opening for our Reed family secret santa gift exchange!  I am listening to my new lullaby CD now - thank you cousin Emma:-)

I am so lucky to have such amazing support around me.  I want to thank all my wonderful friends and family for everything you have done for me and my family this year.  I hope everyone has a very Merry Christmas tomorrow.  I love you all.

Rash be gone!

I had a great night last night and a pretty good day today.  My rash has been MIA for the past 24 hours so we are guessing that I am all better!  I am really getting excited for Christmas.  I had more new PJs on today from Aunt Kris and Uncle Pat but Mommy didn't get to take a picture before my night nurse Heather arrived.  Even my brother was wearing his new Christmas PJs.

Mommy was organizing pictures tonight and wanted to share one of my Christmas card photo rejects....

Back in business

Mommy is finally back in business with her computer!  They had to send it away and replace the screen and some other things to get it up and running again.

The big snow storm we had here in Denver must have worn me out because I slept almost the entire day! It also could have been from the three big poops I had yesterday:-)  We got about 9 inches here in Denver from about 6pm last night until almost 1pm today.  I stayed inside and snuggled with my nurse Tiffany while Mommy and Brody and the neighbors played in the snow.  They were outside for a while making snow angels and playing around.

Mommy and Brody also worked hard this morning making our Christmas gingerbread house.  It turned out beautiful and Brody kept asking when we could eat it....we will see how long the house lasts!  Hopefully longer than Aunt Kathy's cookies lasted.

I also got to wear my pretty Christmas outfit today from the GA Shea's.  I'm getting all ready for Santa to come visit soon!

Fifth

I was such a good girl last night for my nurse Darlene.  I think it was because she gave me such a beautiful present for Christmas.  Her daughter made me a sign with my name for my room and I loved it.  I am so lucky to have such wonderful nurses.

Since I was such a good girl last night, I had to give my nurse Tiffany a hard time today.  My rash returned in full force so my hospice nurse stopped by today to take a look and she thought it looked like Fifth's disease.  It is really just a virus with the rash as the final symptom and should go away in a few days.  Because my immune system is so compromised, it is very easy for me to pick up these things. 

I've been keeping Mommy busy with laundry the last few days and today was not exception.  After my bath, I ended up pooping and throwing up at the same time and I really made a mess.  Luckily, we have a great washer and Mommy was able to get out all the stains! 

Blessed

I am truely blessed with such wonderful people taking care of me and prayig for me. Thank you for all the well wishes and kind thoughts from everyone this year. 

It as been another farily rough day.  My med dosage has gone up significantly  and I really haven't seen much releif.  Also, I have developed a strange rash that comes and goes throughout the day.  The doctor doesn't seem to be too concerned about the rash yet.  We are keeping our eye on the rash!

I got to hang out on the floor this evening with Daddy and Brody.  I was having a rough time trying to calm down so we changed it up a bit.  I tolerated laying on my back for about 30 minutes which is a pretty long time for me.

Christmas is in the air....

The new higher dose of valium and versed didn't seem to have much effect last night.  Today was a bit of the same but we will give it a few more days before we change anything else again.  Tonight I was up and hanging out with Mommy while Daddy and Brody were watching the Grinch.  I was having some respiratory distress so Mommy tried to get me in a new position.  While she was moving me, she noticed that my heart rate dropped  and oxygen went up when I was in an "sitting up" position.

So we decided to stay that way for a bit and I kind of liked it. We decided to prop up my boppy pillow in the same position.  It helps take some of the pressue off my shoulders which feels good. 

Then while I took a little nap, we started organizing and wrapping all our gifts.  Daddy opened up the package from Aunt Kathy and found a special surprise.....







Holding On

We have been trying to incorporate the new medicine into my med-routine and while it seems to be helping, we don't think it is working to its full potential.  I am still having the increased seizue activity and respiratory distress.   The Versed is helping to keep my heart rate down during these episodes but for at lease a little bit, but after it wears off, I am right back where I started.

So we just got off the phone with Dr. Gien again and discussed the medication situation and came up with another dosage change.  He didn't think our last increase was significant enough so we are going up on valium and versed again.  Let's hope tonight is better than the last few nights.  I am holding on tight and ready to get some relief from these nasty seizures.

P.S. I am 11 months old today!  I have amazed everyone by fighting through some very difficult times.  Mommy and Daddy thought they had lost me a few times, but I am a strong girl and have fought for every second of my life.  Happy birthday to me:-)

Vocal Sounds

I have been making some vocal sounds the last few days and everytime Mommy gets the camera out I stop but tonight she finally caught it on video!  It is very rare that I even make a peep or even cry so this will be one for the archives. 

Better

My new medicine seems to be helping me overall.  I am still having some uncomfortable awake times and a hard time coughing out my congestion, but these episodes now only last about 45 minutes to an hour as opposed to a few hours.

We all enjoyed a quiet night and morning today because Brody went down to Mommy's friend Gay's house to have a sleep over with her grandson Morrison.  So, the house was super quiet and I got some special time with my nurses Ines and Darlene.  Mommy and Daddy had a night out on the town which they don't get too often so it was fun for everyone. 

I was quiet and restful for most of today.  Brody came home and got to snuggle with Mommy and my furry brother Finnegan while watching some loud lion show - it's big cat week on the national geographic channel.  That is Brody's favorite:-)

This evening Daddy and Brody braved the cold and headed out to the post office to mail our Christmas cards.  About an hour later (literally), they called Mommy to tell her they are in the mail.  Hopefully they get to the houses by Christmas.  Mommy's computer crashing has delayed the whole process and that is why we have not been able to post evernight the last few weeks.

I am getting some great Mommy time and have decided to take another nap while I finish up my dinner.  Only 8 days until Christmas and I can't wait.

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.