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.

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.