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!

Rough Night, Good Day!

I had a tough night with my nurse Beth....another HUGE poop stressed me out!  It went all over the place so we had lots of cleaning and soaking to do again.  I was in respiratory distress for a lot of the night and finally settled down this morning for my day nurse Joy.  I really had a good day but woke up this afternoon with seizures again and so I wasn't able to get my afternoon feeding.

Mommy and Brody got home and I was just calming down after a dose of morphine and I was trying so hard to stay up to see Mommy - see the video below.

I finally kept my eyes closed and Mommy and Daddy were able to get a feeding in me.  I am still resting comfortable now while Mommy is scrubbing my blankets and clothes from last night's big poop.  Fingers crossed that we don't go through that again tonight:-)