Ladies Night

Yes, it is Ladies Night!  I am home with Mommy tonight while Daddy and Uncle John are out on the town. 
So I had another tough night last night. I slept all night on Daddy and had to be suctioned out a few times.  I don't think the Valium will totally help no matter how high my dose gets.
Today I got to snuggle with Uncle John while Mommy, Daddy and Brody went to the movies.  Then right after my 4 pm feeding and before dinner Mommy tried to lay me in my bassinet and I haven't felt the same since.  I was ok for about 10 minutes but then I got nervous by myself and I spit up. 
Mommy sat with me for a while and tried to calm me down but I just couldn't do it.  Then when it was time for my 7 pm feeding I was still worked up and just couldn't handle it.  I kept having lots of seizures and was spitting up so Mommy had to keep suctioning me out.   Mommy gave me a little massage which helped at first but when she started my feeding pump again I immediately got the hiccups and spit up, so no more food for me tonight!
I just got my meds and am resting on mommy (video).  Hopefully I can fall asleep and get some good snuggle time tonight.

Hooray for Friday!

I had a busy day today!  My physical therapist Siobhan and occupational therapist Neala came by today and we worked on massage techniques to calm me down.  I LOVED it!  I relaxed while Mommy and Siobhan massaged me with special oil.  I can't wait to do this again:)

Then, it was a pretty nice day, so Mommy, Daddy, Uncle John and I decided to walk to the Perk Hill coffee shop.  It was sunny and a bit windy.  I got to wear my Scarlett O'Hara hat which is very dramatic....loved the attention.

Also, Mommy and Daddy got the files from our photo shoot with Julie Harris.  Here are a few of Mommy's favorites - and yes, Mommy had a hard time picking her favorites.  But with an adorable subject like me, do you blame her?

You can see all 185 photos by logging onto Pictage at:
http://www.pictage.com/client/event.do?event=1033599

It's Official!

It's official, Mommy missed her first post;-)  But I must admit, it wasn't her fault!  We fell asleep together and I was so comfortable Mommy didn't want to move me...

I had another rough day yesterday.  I have been having a really hard time coughing up stuff and I always seem to be congested in my throat and nose and it is bothering me.  I saw my nurse Linda and she said it sounded like I had some congestion move to my lungs but it is really hard for her for sure.  She increased my dose of Valium again to try and get me to sleep at night.  Mommy and Daddy keep suctioning me out but it never seems to clear everything out.

So yesterday, Mommy came home and we got to take another bath together and I loved it again.  I think the moist air helped break up some congestion because after the bath I was able to spit up a bunch of mucous.  Then Uncle Jerry stopped by to visit with me, Daddy and Uncle John.

Then, Daddy tried to feed me and I somehow pulled my tube out (love doing that to Daddy!)!  So Mommy and Daddy had to put my feeding tube back in.  I was pretty anxious so Mommy decided to hold me in bed while I ate.  I was only able to finish part of my feeding, but we ended up staying in bed together all night!  I love snuggling.  Hopefully today will be better:)

Also, a shout out to my Uncle Rich!  He is officially a year older today - Happy Birthday Uncle Rich.

Happy Birthday and Thank You Nana!

I had a pretty good night last night.  The larger dose of valium did the trick this time and will hopefully work again tonight.  I got to spend some quality time this afternoon with Daddy while Nana and Uncle John ran a bunch of errands.

When Mommy got home from work I had an explosive #2 that got EVERYWHERE:-(  The fun thing was, I got to get in the tub with Mommy!  I normally don't like getting a bath, but really loved it this time because Mommy held me tight.  I hope we do that again soon.

Today we got to celebrate my Nana's 30th (;-)) birthday!  We enjoyed a nice dinner that Nana prepared and then had a really yummy cake.

We went outside to take a few pictures since I probably won't see Nana again for a while.  Thank you for helping take care of me Nana.  I will miss snuggling with you and spending lots of time together.

Uncle John is Here!

Last night was very difficult for me.  I slept with Mommy from 10pm to 2am and then Daddy took me.  I was grunting and having seizures and could not sleep at all so Daddy had to sit up with me to get me to calm down.  They used the suction machine a few times to help me clear my nose and throat.

My hospice nurse Linda told Mommy and Daddy to try and get a few doses of Ativan before bedtime in me and she increased my dose of Valium again since it still doesn't seem to be working consistently.

Uncle John arrived early this morning to meet me and help Daddy take care of me once Nana Shea leaves. I was able to get some good snuggle time with Uncle John this afternoon!

This afternoon, Mommy and Daddy went to visit the hospice inpatient facility in Lowry.  They said it was very nice and me, Mommy, Daddy and big brother Brody can stay there together.  Not sure I will ever stay there, but we wanted to see what it looked like and keep it as an option for the future.

Then after dinner, a beautiful rainbow appeared.  I wanted to find the pot of gold at the end of the rainbow, but it was raining outside and Mommy said it was too wet and chilly for me to be outside...bummer:-(

Pictured Out:-)

So last night was another rough night for sleeping.  I fell asleep in my bassinet but Daddy picked me up around 1am and brought me in bed with him because I was grunting and moving around a lot.  Then I was able to sleep the rest of the night.

I spent a lot of today looking at all my pretty pictures:-)   Hopefully we get the digital files soon so I can post my favorite pictures here.

Nana and Daddy had to suction out my nose and throat a few times today because I have been having a hard time swallowing and coughing stuff up.  I think that is why I don't like to be by myself.  I get scared when I am choking or having a seizure and it helps my feel more comfortable when someone is right with me.

We took a break from taking pictures today, but Mommy will share another one she took yesterday.

Uncle John is flying in tomorrow to visit me and help out Daddy.  I can't wait to meet you Uncle John!

My pictures are ready!

My professional pictures are ready for viewing on pictage!  Just go to this link:  http://www.pictage.com/1033599 and sign in.

Thank you Julie for taking such beautiful photos.

Paparazzi

I had a pretty good sleep last night.  I woke up around 5 am to eat and got to spend the rest of the morning snuggling on Mommy.  Nana an Pop-Pop Reed left really early this morning, but luckily I was awake and able to say goodbye to them.  Thank you for visiting me.  I love you both and will miss you.

Later in the morning, a photographer named Julie Harris came over to take family pictures.  It was a lot of fun getting all dressed up and spending lots of time with my big brother Brody, Mommy and Daddy.  My furry brother Finnegan even snuck in a few shots.  We don't have Julie's photos back yet, but Mommy took a few of her own.....

 Big brother Brody was strutting his stuff for the camera:-)

Then we ate lots of easter candy and my brother ran around like a maniac (nothing new!).  Thank you Aunt Kathy for the yummy cookies, candy and books.

My brother and I watched Peter Cottontail from Auntie Dina.  I even caught Mommy and Daddy watching it too:-)  Happy Easter everyone.

Fun Saturday

So I had a pretty good night last night.  My higher dose of Valium and Ativan seem to have worked.  Tonight will be the true test.  I've had a little bit of trouble today with trying to keep my secretions down and I sound really gurgly.  Mommy and Daddy have used my suction machine a few times today but I am also coughing/sneezing some out.

Mommy, Nana and Pop-Pop went to the mall today and bought me a pretty dress to wear for our family pictures tomorrow:)  My brother Brody got a matching sweater to wear too!

We all enjoyed a fun dinner tonight and I got to snuggle with Mommy while we ate.  Yummy!

Then I got some bonding time with Nana and Pop-Pop Reed before they leave tomorrow:-(  I will miss you - come and visit me again soon.

The Reed's Visit:)

Today was a very busy day.  Nana and Pop-Pop Reed flew in on an airplane this morning to see me!  Then this afternoon Reverend Elizabeth came over to baptize me.  Nana Reed brought my Mommy's christening dress that she wore when she was a baby.  My aunts and cousins also wore the dress for their christening.  Here is Mommy getting me dressed!

Then Nana Reed held me for some pictures!

To use in my baptism, Nana's friends gave her special holy water from Greece and special oil which Reverend Elizabeth used to say a special blessing for me.  More pictures:)

Then my big brother Brody watered the flowers with my Baptism water...he loved that!  He wanted to water the cars too but Reverend Elizabeth said we could only water the flowers.

 Then I got some much needed snuggle time with Nana and Pop-Pop.

Mommy and Daddy also talked to nurse Linda and she increased my dose of Ativan and Valium.  I had my first higher dose of Ativan and it doesn't seem to be helping yet.  Hopefully I am able to get a good night sleep tonight.  Last night was pretty rough so I could really use some good rest tonight.

Thursday is over!

Another rough night last night:-(  Valium didn't work and it took me a very long time to relax.  I finally fell asleep around 1am and woke up again around 4am.

My nurse Linda came today with the nutritionist.  She said my lungs sounded good and is going to check with the dr. to see if I need a higher dose of Valium.  She also suggested that Daddy give me Ativan 3 hours before I get my bedtime dose of Valium tonight to help me sleep.

Daddy also talked with the Chaplain and I am going to get baptized tomorrow afternoon.  Nana and Pop-Pop Reed are arriving tomorrow morning and Nana is bringing my Mommy's baptism dress that I am going to wear:-)  Hopefully it fits!

My furry brother Finnegan is always trying to snuggle with me and Mommy caught him trying to get in my bassinet with me.  He loves sleeping at my feet and keeping me warm!

 

I hate my car seat...

I had another pretty good night last night.  Mommy and Daddy gave me Valium again and I was able to sleep in my bassinet from 10pm to 5am.  I tried to go longer, but I started to wake up after my 4am feeding and got pretty restless and spit-up.  So Daddy took me in bed with him and we snuggled in bed until my big brother Brody woke up.

This afternoon, Daddy, Nana and I went to the Children's Hospital to visit my neurologist.  I had a really hard time sitting in my car seat.  I don't like to sit in my car seat because I can't arch my back or put my head back....plus no one can hold me when I'm in my car seat and that really makes me nervous.  So I got very anxious and Daddy had to pull over the car to calm me down.  Once I got to the hospital I was able to calm down and I took some Ativan and that helped me.

I now weigh 10 lbs 12 oz!!  Daddy talked to the Dr. about my increased seizure activity and how I am having a hard time at night and do not like to be left alone.  She suggested that Daddy give me Ativan more often and continue using Valium at night to help me sleep.  We are also still in the process of getting my anti-seizure drug Keppra back down to my original dose since we more than doubled it during my last hospital visit and it didn't help with any of my seizures.

Then, Mommy and Brody got home.  We all sat down at the dinner table and afterwards Brody brought me my favorite toy and giraffe blanket.  I just got my medicines and hopefully we will all be fast asleep soon!

Sleep!

Well, last night I took my Valium at 8:30 and I was fast asleep by 11:00 pm:)  I slept all night in my bassinet until 7 am.  Mommy and Daddy were both so happy to get to sleep in their bed without me!

Today we had a visit with the Hospice Chaplain.  She blessed me and talked to Daddy and Nana Shea.  She had lots of comforting things to say that made Daddy and Nana feel better.

I spent a lot of my day snuggling with Nana while Daddy got to run some errands.  Then Mommy and big brother Brody got home and I was nice and awake to spend time with them.  I love laying on Mommy and Daddy's chest - my neck muscles are really strong so I am able to look all around.

 
Tomorrow I go see the Neurologist at Children's Hospital which means I have to ride in my car seat...not looking forward to that!

Sleep?

Well, I had another tough night.  The Valium took a long time to kick in last night and it didn't last as long as I would have liked.  I was able to sleep by myself for a few hours but Daddy ended up holding me when I woke up at 4am.  I am sure wearing him out:-)

I had a pretty good day and spend most my time snuggling with Nana Shea while Daddy did some much needed yard work.

It is now 10pm and I am going to try the Valium again before bed and hopefully we can all get some much needed rest.  I am sleeping now with Daddy but we will see what happens when he tries to put me in my bassinet.  I just can't relax without being super close to Mommy or Daddy....I love being near them.