Super relaxed

It turned out to be another rough night.  My nurse Heather tried giving me Versed to help what looked like seizure activity and I kept throwing it up.  I had an off and on again fever and lots of respiratory distress.

I am also showing signs of not tolerating laying on my left side again.  The first time Joy tried laying me on my left side today my heart rate increased really high and the second time my oxygen dropped really low.  Otherwise, it was a pretty good day.  I didn't need any extra medications and slept most the afternoon.

When Mommy and Daddy got home this evening I was in a pretty deep sleep and my heart rate kept dropping low, making my pulse-ox alarm go off.  Mommy changed my pulse-ox probe to make sure it wasn't going haywire, but that didn't seem to make a difference.  Maybe the new relaxing CDs Mommy made me this evening are working better than we thought....

Long lost enemy

Mommy and Daddy switched it up last night with Mommy watching me first and I was a sleepy good girl!  It wasn't until about 2:30 am when the shift change happened that I started to have problems.  My oxygen was dropping pretty low and turning up my oxygen concentrator wasn't making a difference.  A little bit later after Mommy went to bed, I had three big poops in a row!  Poor bleary eyed Daddy had to deal with the clean up and the respiratory distress that comes along with my poops.  I calmed down after that ordeal and fell back asleep.

I slept the first part of the morning with Daddy and then spent the afternoon with Mommy while Daddy put his ski rack on his car!  My heart rate was creeping up again and I was having oxygen issues and wouldn't you know it, I pooped again - twice!  Mommy had though she was home free since I pooped for Daddy but boy was she wrong.

After the cleanup we switched it up and uncovered a long lost enemy - my bouncy chair.  I used to HATE my bouncy chair since it #1) didn't allow me to arch backwards and #2) kept me on my back.  Mommy though we would give it another shot since it sits me a little more vertical and I am liking lying on my back these days.

Guess what....I liked it!

I was worn out after all that and slept almost all afternoon.  I started to wake up around dinner time and was dealing with low oxygen again.  I was on my left side and the minute Mommy picked me up my oxygen also went up...

She put me back in my crib on my right side and my oxygen seemed to be doing just fine.  I had lots of congestion and now that my nurse Heather is here I am starting to relax again.  It's a chilly one here in Denver so I am glad to be in my warm cuddly bed!

Steam Bath in the Kitchen!

Last night I started the night off with a low temperature that I just couldn't kick and some respiratory distress.  The fever broke and I fell asleep around midnight.  I woke up around 5am with more respiratory distress and that pretty much continued until after my bath around 10am.

Mommy decided to give me a bath in the kitchen sink today since it is such an ordeal to move everything into the tub area.  I am also getting hard to hold since I am very limp and even though I'm only 18lbs, it feels like double that when trying to move me around.  The sink was a little small, but I still liked it and Mommy left the faucet running (don't tell Denver Water!) in shower mode so I got a little steam action to break up my congestion.

After my bath and exercises I was finally able to cough up a bunch of congestion and settle down for the afternoon.  I slept most the afternoon and evening with just a few respiratory distress episodes.

I am finishing up my last feeding of the day now with Mommy.  She has first shift tonight and then Daddy will take over.  I just had a breathing treatment and all my stats look great so fingers crossed for a sleepy evening!

Workout

I had another difficult night with my nurse Beth.  We tried albuterol treatments and lots of medications but nothing seemed to help my high heart rate and respiratory distress.  My oxygen was low this morning and we had a hard time keeping it up but I started to bring it up on my own just as Daddy was getting in the shower.

It was a typical busy Friday with my nurse Ines today!  My hospice nurse Carol stopped by to check on me and we got all our supplies and medications ordered.  She is still amazed at how well I recovered from the pneumonia!  I have been pretty sleepy the past few weeks with some difficult awake moments but we don't see an immediate need to increase any medications.

My therapists Neala and Siobhan stopped by this afternoon and gave me a great workout.  We are working on ranges of motion that a typical 1 year old would be doing but that I am not able to do on my own.  Needless to say, my limbs were moving all over the place and it felt great.  We tried to do some exercises on my back but that just didn't sit well with me so we stopped.

I was wiped out when Mommy got home and she saw my heart rate lower than she had seen it in weeks so we all knew I was in a deep sleep!  I am starting to wake up now and my heart rate is going up.  My night nurse Heather is here tonight so we can all get a good night sleep.

Who's sleeping in my bed

I had another rough night last night with my nurse Heather.  I don't know why nights have been so hard for me the last few days.  My heart rate stayed really high almost all night and no matter what Heather did, it wouldn't really come down.  I was also very congested and extra albuterol nebulizers and morphine didn't seem to help my respiratory distress.  I think eventually I just got tired and fell asleep around 3:30 am.

My day with my nurse Tiffany was much of the same, except I added in three large poops!!  You can just imagine what excitement that added to my day.  My heart rate stayed a little lower than it was last night but I was still dealing with lots of congestion and seizure activity.  

My hospice nurse talked with Dr. Gien today to discuss my meals and he sees no reason to switch anything on me now.  That is fine by me because I seem to be doing ok on the calories from my infant formula and the last think I need now is a gut problem!  So, the final decision today was to keep things the way they are for now.

I was trying to get some sleep this evening and there was lots of commotion going on around me in my crib.  Turns out Brody wanted to get in and snuggle with me.  That didn't seem to bother me one bit because I slept right through everything. 

Even though I was sleeping, I could still hear his voice and I love to have him near me.  I think he missed his old crib and his old mobile which he kept turning on, and on and on until Daddy told him it was time to hop out and get ready for bed:)

Then we all opened Valentines gifts from Nana and Pop-Pop Shea.  I loved my card and can't wait to wear my new pjs:)

Now I am enjoying a little hand holding with Mommy before my night nurse Beth gets here.  Let's hope tonight is a better night for Beth and I.

Big girl food

I had a pretty rough night with my nurse Darlene last night.  I was up more than normal and having more outward violent type seizures that kept waking me up.  I was also running a low grade fever so I was taking fever reducers to keep it from getting out of control.

We had a few more than normal visitors today which made the day a bit more exciting.  My hospice nurse Carol came by with the nutritionist Sydney.  I am going to switch from baby formula to big girl formula but finding something that will fit down my tube seems to be a challenge.  The pediasure we ordered will not fit down the tube that goes in my nose to my tummy so we are on the hunt for something new and thinner:-)

We had another nurse stop by this evening to fill out paperwork so we can use my special babysitter Marsha.  It is 7pm now and all my visitors have left and I am just here with my family listening to my brother running around like a mad-man in between snuggling with Daddy!

Early Valentines

My night last night was pretty good and same with my day today.  Nothing new and crazy to report here so we will keep this one short and sweet. I did get an early Valentines day card from my Nana and Pop Pop Reed which brightened my day.  

Go Eli!

I can't believe it is Sunday already....where has the weekend gone?  Daddy watched me Friday night and I am definitely having breakthrough seizures between my valium and morphine doses.  That is causing me to have a lot more secretions that I am needing to cough up.  

Saturday I spent the morning with Mommy while Brody and Daddy ran around town and then my special babysitter Marsha came over to watch me so the family (minus Finny and I) could go out.  Mommy, Daddy and Brody went to the Aquarium which I heard was pretty cool to see at night and then they had a dinner out together.  Mommy watched me last night and I was a pretty good girl.  Besides the increase in seizure activity and congestion, my oxygen has been a bit low all weekend and my heart rate has been higher than my normal.

Today Daddy watched me while Mommy and Brody spent the morning together.  He read me a nice story....

Then Mommy and Brody went outside to do some snow building but the snow wasn't the best for making forts and slides but Finnegan thought it was pretty cool!

Then we all took a nap!  Brody was in his bed, Daddy was in his bed and Mommy and I in the rocking chair.  It didn't seem like it was long enough but when Brody is up, everyone is up!  So Mommy decided to change me into my pjs and I got to wear my new stylish "shoe" socks from Aunt Caryn.  Seems like I have a new pair for all my outfits now.  Thanks Aunt Caryn!

Brody and Daddy are out watching the super bowl now and Mommy and I are hanging out at home.  I have to honor my NJ roots, so GO GIANTS!  Plus Eli is much cuter than Tom.

Brrrrrrrrrr

I stayed warm and cozy in my house today while I heard lots of buzz about the snow outside.  I had another pretty good night that is, until early this morning when I decided to have my big poop.  No one is appreciating the 5am poop wake-up call but boy does it make me feel better and then I get to sleep in:-)

I woke up this morning to about 6 inches of snow and I got to snuggle with Daddy while Mommy went out to shovel for my night nurse Beth.  We got so much snow and it wasn't stopping so Brody's school was closed and he got a snow day!  Poor Daddy didn't get a break and had to head to work while we stayed home and sipped hot chocolate.  We had lots of appointments today but the weather put a damper on almost all of them.  My therapists had to reschedule for next week and my Hospice nurse Carol just did her check-in by phone since I have been doing so well recently.

We had a quiet afternoon except for Mommy and Brody going outside to keep up with the shoveling.  My day nurse Tiffany left a little early since the roads were not getting any better and the snow was still falling.  When Daddy got home he had to go our and shovel again before dinner!

So I am sleeping in my bed now and have been pretty good all day.  I am sounding a little more congested than the last few days and my oxygen is a little low but overall I am a million times better than almost a week ago.

I was able to watch the snow from my bed today and glad I didn't have to go outside.  Daddy measured at about 7pm and we were at 14 inches of snow so far.

Being Held

I've had some more good days and nights!  Now that I've been more awake the last few days my seizures are becoming a little more noticeable.  Don't get me wrong, I am still sleeping a lot but the times I am awake, it is usually consisting of seizures, coughing, suctioning and pooping.

I woke up with seizures and lots of secretions when Mommy and Daddy got home from work this evening and Mommy decided to hold me for a little bit and rock me.  A few weeks ago I would have HATED that, but for some reason it worked tonight and my heart rate slowly went down and I actually fell asleep.  I must have remembered the days when I would not let Mommy and Daddy put me down and the only way I would fall asleep is to have someone right near me so I felt like they were holding me.  That got very difficult for everyone at night time!

Anyway, I rocked with Mommy for about a half hour and then she put me back in my crib on my back and I fell asleep!  I am still asleep now and the snow is starting to fall.  The weather folks are predicting a bunch of inches of snow tonight.  We will se how it goes.