Lost footage

Another "average" evening and day today.  It's strange but I haven't had a medicine change in at least a week!  Mommy and Daddy are usually updating the nurses each week with my medicine changes, so they have all been pleasantly surprised by that and my new room setup.

I was awake when Mommy and Daddy got home this evening so we had a quick dinner and clean-up.  I needed lots of suctioning and Daddy gave me hyocyamine hoping that would help but I'm now giving my night nurse Heather a hard time.  My fever is starting to creep back up so she was going to try some Motrin to see if that might help.

Mommy didn't get a chance to take any pictures today, but we did find some "lost footage" from last week.  Brody woke up early and was giving me lots of love and attention.  I love my big brother.

Today was another good day for me and I was totally relaxed in my new room...speaking of my new room, check it out!

I love all the music and lights of all my new crib toys.  Mommy came home this afternoon and I was awake having some trouble and she re-positioned me, suctioned me and turned on my music mobile and I drifted right off to sleep again!  Plus, my crib is right next to the window so I can even look outside and get the afternoon sun on me:-)

We also got a few pictures from Auntie Caryn who is Mommy's amazing photog friend.  She came over the house on Saturday before her baby shower and took some photos for us.  Here are a few of her favorites:

Kicked 'em out!

It was a busy bustling day in the Shea house!  This morning started off with a warm bath and some exercises and then the work began.

Mommy and Daddy finally decided to partially give up their room and let me use it most of the time.  Prior to this evening, the nurses and I are usually in the family room which really isn't the most ideal spot for me to be.  So, we did a little re-arranging and managed to keep Mommy and Daddy's bed in the room along with the dresser and one side table while moving in my crib and a comfy chair for the nurses.

We worked on the room all day and after my nurse Heather arrived, we moved the last thing into the room....me!!  It was funny because I was awake and having respiratory distress until Mommy laid  me down in my crib.  I loved all the new colors, sounds and toys.  We will try and get a good picture of the room tomorrow.

Busy

Well it has been a busy few days and Mommy had thought she posted but something is malfunctioning with her cell phone posts.  I hope everyone has enjoyed their thanksgiving holiday!  I was ok on thanksgiving but gave Mommy and Daddy a really hard time that night.  Mommy held me for most of the night and I have been battling a fever ever since.

Daddy and Brody hit the slopes on friday with the neighbors and had a lot of fun.  Next time Daddy will wear skis and tackle the big slopes with Brody.

That evening Mommy, Daddy and Brody went over a friends while I stayed home with Marsha.  I had a pretty good day and evening which made everyone happy.

Today I got to say hello to my Auntie Caryn who is visiting from Texas for her baby shower.  She took lots of photos which you may get to see tomorrow.  Mommy took a few this morning during and after my nebulizer treatment.  It totally relaxed me and Mommy was able to get a good picture.  you can see how much I am growing in my second photo.

I stayed home today again with Marsha while everyone went to the baby shower for Ryder.  We all can't want for baby Ryder to arrive here from Korea.  It will be such an exciting time for everyone!

Brotherly love

Mommy was looking at some photos today and she saw one she hadn't seen in a while and it reminded me of how much love I get from my big brother.

This photo was taken on February 12, 2011, almost one month after I was born and just after my very first night at home.  It was very late when I got home on the 11th so I didn't get to see my brother but he was so excited to wake up and find me at home!

Even though we can't play together he will bring me my favorite animals and blankets.  He kisses me goodbye every morning before he goes to school and kisses me goodnight every night before he goes to bed.  If I am lucky I even get a big brother hug.

I am resting peacefully with my night nurse Darlene.  The meds seems to working although I am showing some signs of Valium break through.  Mommy will be home tomorrow with Brody so she will help figure out if I may need another Valium increase before we head into the holiday weekend.

Hiccups

Minus the stress of pooping, I had a great night last night.  Mommy talked to Dr. Gien again this morning and he had consulted with a few pharmacists and they all agreed we should stick with the higher dose of hyocyamine.  We were going to try a new drug but the side effects are the same and I am already responding well to the hyocyamine so we are sticking with it even though my dose is much higher than the maximum dosage.

One of the main reasons we have Dr. Gien as my doctor is because he really listens to Mommy and Daddy.  He isn't afraid to think outside the box and really has my comfort in mind.

I was having a bad case of the hiccups when Mommy got home.  She held me for a while hoping that would help make them go away but it just made it worse.  I got back into my boppy and it still took me a little while to calm down.

I am with my nurse Beth tonight so Mommy and Daddy can get some sleep.  

Mommy and Daddy talked to Dr. Gien yesterday and we decided on another drug to try since I've been having lots of trouble with my lower dose of hyocyamine.  The problem is this drug will not be available until Tuesday at the earliest, so we decided just to go ahead and keep giving me the higher dose of hyocyamine with caution.

I've been having a fever off and on the last few days so Mommy and Daddy think I'm probably getting sick which may also explain my increased secretions and seizure activity.  Here I am yesterday trying to relax after a nice steam bath with Mommy and my exercises.

This morning was very busy!  We took our Christmas card photos and I was a very good girl:-)  My brother was so cuddly and he held me for a few of the photos.  We had a tough time getting him to smile but eventually he cooperated.  Mommy will keep the photos a surprise before Christmas, but keep an eye on your mailbox in December!

My fever is back tonight and I'm not feeling that great.  I gave my nurse Heather a hard time on Friday so I was going to try and be a little easier on her tonight, but it isn't looking good right now.

A good thing never lasts

I was having such a good week and then we got some bad news today.  Turns out I was taking too much hyocyamine.  We confused my dosage and have to cut back on how much I am taking even though I was doing so well on the increased dose:-(  This is a true bummer since today was my first pretty bad day in almost a week.  The hyocyamine has really been helping keep me calm so today I didn't get to sleep as much and was having lots of seizures and needed lots of suctioning.

We will talk to the doctor tomorrow to see if there is another medication we can try instead of my hyocyamine which doesn't seem to be working at the maximum dose I am allowed to have.

Happy Birthday to me today!!  I am 10 months old and growing.  I weighed just over 15lbs today which is a pretty good increase from the last time I was weighed.  After everyone sang happy birthday to me I  got to taste a little icing from my cupcake!

Once Mommy put the icing in my mouth I started to drool a little bit so I guess I liked it.  I haven't had anything besides my suction catheter in my mouth in a few months so it was different.  Then everyone else enjoyed the cupcakes including Finnegan the cat!  He was begging for some cupcake so Mommy gave him a little taste of icing too.

Snuggle x 2

My nurse Tiffany texted Mommy today and asked her "Did you tell Tess to be an angel today?".  I am always an angel, but I was especially good today!  Last night was a little different because I had two big poops again and they just totally stress me out.  

I didn't need much suctioning today (unusual) and I even had a few calm moments when I was awake (double unusual).  I was laying peacefully in my favorite side lying position and it appeared that I was looking around.  If my eyes are open, my eyes are usually moving in an erratic pattern that normally indicates I am having seizure activity, but for some reason I was very different today.  

After dinner Mommy got to hold me again!  She picked me up when I was asleep, which is a risky move on its own since that usually wakes me up and causes me stress, but for some reason, this time I stayed asleep and we got more snuggle time!  Brody even joined in on the fun while enjoying what is left from his Halloween bucket.

Let's hope I have as great a day tomorrow as I did today...and weekend too:)

Snuggle Time

Another pretty good night in the Shea house!  We have upped my hyocyamine and that seems to really be helping me.  When I start having seizures it increases my secretions.  Since I can't swallow my secretions it makes me nervous and I start to have more seizures and the cycle goes on and on.  Mommy and Daddy have started giving me the hyocyamine when I start to have seizures and that will usually make these "episodes" end a bit quicker since it helps dry up the secretions and acts as a sedative too.

I got a special treat today and Mommy held me for almost an hour until my nurse Darlene arrived.  I don't get to be held that often since it is too hard for anyone to hold me and take care of me at the same time, especially when I am home with just one other person.

I actually look a little chunky in this photo!!  It was so nice to snuggle with my Mommy:)  Maybe I will get to snuggle with Daddy tomorrow.

Down time

After a very busy weekend, I was happy to enjoy a very quiet day today.  I was pretty sleepy this morning  and was a good girl for my nurse Joy...that is until this afternoon.  I wasn't able to get in my 4pm feeding because I was up with seizure activity and respiratory distress and was not able to calm down.

Finally she gave me morphine and put me on my tummy and I eventually calmed down and fell asleep right as Daddy and Brody came home.  That was good for Daddy because he was able to get dinner ready for everyone!  Mommy came home a little later and her and Brody were playing right near me and singing me songs.  I was so sleepy that I didn't wake up but I could hear them!  Brody was kissing my feet and playing around me with his cars.

I was still asleep when my night nurse Beth arrived.  I haven't pooped yet today so we will see how long I stay asleep tonight!

Busy Busy!

I had an awesome night with Mommy last night.  I gave her a little trouble for an hour or so but then fell fast asleep and slept from about midnight to 7am without waking up or needing any suctioning!!  I haven't done that for Mommy or Daddy in a long time!

I was still sleepy in the morning so Mommy, Brody, Jason and Uncle Eric hit up Four-bucks (aka..Starbucks) and the local bagel shop while I stayed home with Daddy for some extra zzzz's.

Mommy then got me dressed in my new outfit that cousin Jason and Uncle E had brought me!  I HATE getting dressed as you can tell by the picture below.  Any movement usually bothers me which is a big reason why I don't like to leave the house unless totally necessary.  I was actually pretty good when Mommy was getting me dressed and calmed down a bit later when Uncle Eric was rubbing my head.

My nurse Tiffany arrived to watch me while everyone else went out for lunch, but first they took some pictures with Uncle Eric and Jason.  I would have joined the fun by Tiffany was trying to get me calm.

They crew went out in downtown Denver and then had to say goodbye to Uncle Eric and Jason.  We were all sad to see them go and hope they come back soon.  Brody is already asking when his cousin Jason is coming back.  He did say when Mommy was putting him to be tonight, "is Ryan coming next?"

Brody then got to go see the Lion King musical with Mommy and Daddy while I stayed home with Tiffany while Uncle Eric and Jason waited to leave for the airport.  I had a really good afternoon and am just finishing up my last feeding for the day with Daddy.  I have been having trouble with my feedings if I get them too late, so this will probably be the last one for tonight.

My nurse Heather is here to take care of me tonight.  Good night and sleep tight!

Snoozing Saturday

I would have been a good girl last night but I had another big poop for Daddy at around 4am!  It of course got everywhere so it took Daddy a while to get everything all cleaned up!  I was a good girl all day and did lots of sleeping and just a few episodes of spitting up some congestion.

Mommy finally got the video of Brody skiing downloaded but can't figure out how to rotate the video.  Here it is, but you are going to have to rotate your head to see it right side up!

I got to hang out with Mommy this morning while Daddy, Brody, Uncle Eric and Jason went to the movies.  I slept like an angel while Mommy got lots of stuff done around the house.  Then Uncle Eric and Jason went food shopping so everyone else could relax!

Marsha came this evening to watch me while the gang enjoyed a dinner out.  I wish I could have tagged along but car seats and public places are not really a good idea for me.  I am much more comfortable in my boppy close to my oxygen and suction machine.

After dinner I got to hear everyone's voices and even got a few minutes to spend with my cousin Jason since Brody was in bed and not hogging him all to himself!

Shredding

I had a really good last night and day today.  My nurse Ines took great care of me while Mommy, Daddy, Brody, Uncle Eric and Jason all hit the slopes!  It was a bit chaotic this morning trying to get everyone out of the house but once they were out, I was able to relax with Ines!  My physical and occupation therapists came today with written instructions for all my nurses on how to keep my muscles from getting too tight.
I had just gotten my bath when they arrives so after all the exercises I was exhausted!

Then they whole crew came back and told me all about their exciting day.  It was Brody's first time on skis and he was a maniac (no surprise there).  He was a little scared at first, but after a run he was zooming down the mountain running over anything that got in his way!

I got to hang out with Uncle Eric tonight while Jason ready Brody books.  He was trying to help get me to fall asleep.

Mommy will upload some fun video of Brody skiing tomorrow so stay tuned!

Place your Betz boys!!

The two Betz boys are finally here to visit.  All week, all I have heard from Brody is "is Jason here yet?"  I got to meet my uncle Eric and cousin Jason for the first time.  Brody was hogging cousin Jason all to himself!

It was a busy evening here in the house but things are finally calming down.  I just got my breathing treatment and am finally settling in for the night.  I have had a few great nights this week so hopefully tonight is another great night.  I didn't want my picture taken tonight so I covered my face with my hand - take that Mommy!!

I had a pretty good last night...in comparison to other nights.  I was up and down today and didn't give my nurse Joy too much trouble.  I really enjoyed my bath today and Joy got me all dressed up in my corduroy dress and head band!

I was awake and having a tough time when Mommy got home, but I was able to cough up a bunch of congestion and that made me feel so much better so I was fast asleep again during dinner time!  Then I got the best good night kiss from my brother:-)

I am having trouble falling back asleep again.  My night nurse Darlene should be here soon, so I'm saying goodnight to Mommy and Daddy now.  I love snuggle time with Mommy and Daddy before my night nurses arrive.

Both ends

Sounds gross, but it is true.  Daddy got home this evening and boy did I give him a surprise!  He was busy getting dinner ready for Brody and to top it off, I woke up trying to cough up some congestion, but ended up spitting up most of my last feeding and then it came out the other end too!  Mommy got home from picking up some of my medicines to chaos in the house!  Needless to say, we made a big mess and used up lots of wipes to get this one clean.

I had a good night last night so let's hope tonight is just as great!

I hate nights

It was another brutal night last night.  I was up from 6 til about midnight and it was really non-stop seizures, suctioning, spit-up and LOTS of medicine to try and help me.  Nothing seemed to help me and by about 12:30 I finally was so tired and my midnight phenobarbital helped to get me to sleep!

I got a new bath seat since the plastic tub was getting too small for me.  I don't lift my head so my new seat is really comfy and lets me take a bath lying on my side which I love.  Bath time is much nicer in my new seat!

Daddy and I had a sleepy day today.  He was recovering from a late night out and I was recovering from a late night up! Thank gosh we got an extra hour in today to catch up on our zzzzz's.

As Mommy and I are writing this, I am up an at em' again.  It is not going to be a fun night tonight.  Daddy has round 1 of the night and Mommy will take over around 1:30am.  My new nurse Heather starts this week and she will be taking care of me on Wednesday and Sunday nights.  Mommy and Daddy are not nearly as cranky when they have had a full night sleep so we all can't wait for Heather to start this week!

Bedtime

Mommy and I are all set up and ready to take on the night.  I have all my meds until 6am and really having on awful time right now.  We climbed into bed at 8:30 and have tried my lineup of meds and I am still awful.  We are hoping my early dose of valium will do the trick soon.

Daddy is out on the town tonight to help celebrate Robin's birthday.  Look out denver because there will be a rum shortage after tonight!

Holding tight

It has been a tough am.  I am on the verge of waking up again and am just now finishing my second feeding of the day.  We are going to have to speed up if I am going to get all my feedings in this evening...

Waiting for Santa.

Maybe if I keep wearing my Santa pajamas he will get here faster...

I had a tough 1st half of the night with Daddy.  Mommy and Daddy have decided to split night duty in half when I don't have a night nurse so they can each get a few hours of sleep.  Mommy lucked out last night since I was a little angel for the second half.

This morning I was up in distress for about an hour so Mommy decided to do some joint compressions followed by a very nice foot massage.  That combined with me coughing up a big glob of congestion has totally relaxed me so I am finishing my 8 am feeding now!  I need to get my nap in before my big bro comes home from soccer practice.

Morphine-less!!

Well it is about time!  Looks like my angel took care of me last night because I was peaceful and slept almost all night and did not need any morphine.  Same with today, I didn't need any morphine and Tiffany said I had some peaceful awake moments when I didn't seem to be having seizures.  It is hard to tell sometimes since I am always having abnormal brain activity but my eyes were not showing signs of nystagmus which I often do when I'm having seizures.

I started having trouble just about 7:30 tonight and Mommy was holding me trying to pat me on my back and help me cough up some congestion.

I didn't get anything major up but my nurse Beth is here now giving me a nebulizer and I feel like I could cough something up.  I will check in tomorrow and let you know how my night went but I have a good feeling about tonight!

Guardian Angel

You wouldn't believe it but I had another HUGE poop last night.  Mommy is really getting tired of soaking and scrubbing clothes and blankets.  As she said, last night's poop was ridiculous!  At least I'm regular...

Aside from the stress the poop puts on me, I did have another tough night and day.  I needed morphine a few times and I was running a low grade fever today.  We will keep an eye on that and make sure it stays under control.  I didn't sleep much today either so I am really wiped out now.  I have been asleep for the past 4 hours.  I usually wake up around 9 so we will see if I follow the same pattern tonight.

I got a little present today - a Guardian Angel from my Uncle Frankfurter and Aunt Nancy.  Mommy pinned it to my bassinet so it can protect me while I sleep.  Brody and I will debut our new t-shirts soon, so stay tuned.  Thanks Uncle F and Aunt N!