Countdown to Ciaran's 4th birthday

Lilypie Fourth Birthday tickers

Sunday, July 27, 2008

London and I making a few calls



I'll dial, London. I got it handled.










I've got a signal...it's going thru...












Here you go...listen for when they answer...








A little closer...



The pics tell it all.....I thought he needed to use the phone......maybe it's a girl thing?????

Friday, July 25, 2008

Aunt Norie & Uncle Dave-O

Lots of blue eyes in this pic... What is that thing on your face???

My Aunt Norie & Uncle Dave -O were here last weekend from California. We always go see them and Aunt Norie plays with me. Mommy hasn't taken any pictures of us together lately but she did find these from last September.

My Wading Pool




This is a very refreshing way to cool off when it is 115ยบ outside. I am just the cutest little booger on the block. :) Check out my cool Dora swimshorts... ; )

Thursday, July 24, 2008

Motel Room - Video

This short video is of the motel room we stayed in while in Phoenix...it displays just how much stuff you need for one little person...on one short roadtrip. Goodness!!!

video

Our motel room


Mommy loved our room...look at all the pillows on the bed...WOW!!
















Look at this face!!!




















Here ya go...all done Mommy...


The room had new carpet also...it was nice to crawl around on.

Tuesday, July 22, 2008

Orthopedic update



The girls waiting for Dr. Huang. Say Cheese!!!















Waiting for the physical therapist...you have that thing again Mommy, that camera thing.

















Okay...where to start...Mommy likes the new ortho doc, Dr. Huang, alot better than the previous doc. He spent alot of time with us and really tried to explain things to Mommy, whereas Dr. Vu did not. Dr. Huang doesn't want me in braces yet, either. He does know Mommy is going to demand them at the next appt in Oct. He felt my feet (the turning outward/upward thing) wasn't that bad because they were still flexible.


The physical therapist, Linda, thought I had some impressive moves for my lesion level. (The part where my spinal cord came out) I was rolling over for her, crawling, playing, sitting up...I didn't hold anything back. We were hoping that with Linda behind us as we went into the ortho appt that maybe the doc would approve them.

Now for the bad news....I have scoliosis. My local P/T, Ann, and Mommy both thought I did. Well, after they did the X-rays, the image was there, plain as day. The upper curve was at 27° and the lower was about half that. So, you figure your spine should be 180°...straight up and down...and a right angle is 90°, so my spine is almost a third of the way to a right angle. Did I confuse everybody??? I haven't passed Geometry yet, but I think I explained it as well as I could. The doc said he is not going to be concerned until it reaches 50°. So in the meantime, Ann, the P/T and Mommy are keeping me flexible and working my abs, obliques and back muscles.
The previous post, the one with me in the orange swimsuit, actually shows how bad my back is already. Mommy is very worried about this because she has another on-line friend and their daughter had to have rods put in her back. Let's all pray it doesn't get much worse, K????

Swimming lessons


Mommy and I have been taking swim lessons this week and last week. I've had lots of fun and am learning to blow bubbles and dive underwater, play on the bodyboards and noodles...I don't like the noodles.

Thursday, July 10, 2008

Off to Phoenix again...

Mommy and I are going to Phoenix again tomorrow morning...I think we are leaving about 4:30 am because I have appts at 10:30 & 1:30. The first appt is with Linda, a Physical Therapist at the CRS clinic (Childrens Rehabilitative Services). The next appt is with a NEW Orthopedic doctor. Mommy can NOT stand my old one, Dr. Vu. He shouldn't be working with children, especially special needs children. As another spina bifida mommy put it...he is a pompous a***ole. Dr. Vu just feels that just because we are born a certain way, we should stay that way and there is no hope, at least that is the impression we are getting. Well, my Mommy thinks otherwise. Therefore, we are getting a second opinion. We hope this doctor will make the approval for me getting some braces for my feet. Let's see if I can explain this...I can flex my feet very well, but I cannot point them. They also go outward and bend upward...??? I'm sure if you look closely at this video you will be able to see what I am talking about. This video also displays my right leg (the weaker of the two) having muscle spasms or twitching. This is the 3rd time it has done this twitching thing.

video

Keep your fingers crossed that they approve something for me. Whether it be, AFO's (Ankle-Foot-Orthotics) or HKAFO's (Hip-Knee-AFO's). My P/T here is BHC would really like to see me in something like the HKAFO's. I'll keep you informed.

Tuesday, July 8, 2008

A few more pics of Skyler




Goodness, we are cute kids!!!
On Saturday and Sunday, I stayed the night at Aunt Debbie & Uncle Duane's house. Mommy & Daddy went to Phoenix for a Diamondbacks game. I swam all day Satuday with Aunt Linda, then I went in the house and hung out with Aunt Cindy and Skyler. On Sunday, I was so excited to see Mommy, we are together so much, but it was good to hang with the family and all my cousins at the BBQ.

Sklyer & Auntie Michelle






This past 4th of July weekend, Aunt Michelle, Uncle Shaun and Sklyer came to Bullhead City. Uncle Bill and Uncle Jesus also drove over from California for the fun weekend that was planned.


On Friday night, Mommy and I went to Grandma's house where I got to play with SKLYER!!! I hadn't seen him since April...he's walking and talking and GOING TO BE A BIG BROTHER!!!! He gave me kisses, patted my head and then we played awhile.

Conclusion to our trip to Reno



Do you see this??? These are kisses from my Oma before I left. Ravishing Red is the lipstick shade, I think???

Molly and Me!!


This is Molly. Her grandma, Nancy, and my grandma, aka Oma, work together at Safeway. Molly's daddy owns a cafe in Reno called, Mossimo's. Molly has a new little sister that is only 6 weeks old.









She was soo pretty and so friendly!!







Eatting outside at the cafe.

















Saying goodbye to Molly....I liked her...I hope to see her again.

Ciaran's Poem

The following poem was written by my Uncle Jeremy, Mommy's brother. He said it was for his little Ciaran...

I wake up and look for the light,
I search for strength and there is none in sight.
In the room a dim light shines and I feel a presence,
but I cannot see them and my body begins to tense.
I try to find a purpose to struggle on,
I need to find it quick before the light is gone.
Do others look for solace within me,
what is it inside that they see?
Do I face the world that has done me wrong,
or do I turn and run far and long?
I don't know if I should go or stay,
please light show me a path before my will fades away.
Is there a place for me among the living,
or should I be somewhere else dark and more forgiving?
Someone unknown is there comforting me as I begin to cry,
all of a sudden I am soothed as the tears start to dry,
and I look up again and wonder why?
I don't know if I possess the might,
I am weakening as darkness looms into night.
I wonder if it is worth going through all the strife,
is this what was meant of my life?
So one last itme I ask why an I here,
and with a rush of warm light the answer is clear.
I must go forth and face the world strong with no regret,
for my purpose is clear...I am not done yet...
Written by
Jeremy M. Harrison

Monday, July 7, 2008

Uncle Jeremy


This is my Uncle Jeremy. He is a coach for the Damonte Ranch High School Football and Track teams. He got me this cool shirt....it says I'm a Future Mustang!!

Swimming



Swimming with Mommy!!! We are taking swimming lessons starting July 14. I am so excited!!

Playing with Jannah
























Hugging Sprocket!!















This is my cousin Jannah. My middle name is Jonna...obviously we spell it differently. She got me a new stuffed animal, Sprocket. He has a little hoody on. She played with me for a long time and kept telling me how cute I was. Gotta love her!!!



Justine's volleyball tourney


My cousins Jim, Jannah & Justine were in Reno for a huge volleyball tournament. They live in Spokane, Washington and Justine is going to be a senior in high school.



Me and Oma at the courts. There were 47 volleyball courts, wow!













My cousin is number 12. At 5'8", she was the shortest player on her team.



















Mommy wanted me to get familiar with the volleyball court because they have sitting volleyball in the Paralympics.

Making a few calls back home to Daddy

I was missing Daddy so Oma helped me give him a call.
Hello, Daddy...it's your little punkin'...

Playing at the Grandparents house







Cute as a button..playing with my blocks. Look at that hair...it's getting so long.

















Chillin' with Elmo in my Port-a-crib...he's my bud.


















Moisturize...Moisturize...Moisturize...



















My new tent Oma got me.


















Get me outta here!!!

Me & Oma


I was showing Oma how big I had gotten over the last month :)

Me, Papa & Nascar

This is Nascar...he has pretty green eyes and loves his chair!!


This is me with my Papa and his kitty, Nascar. I'm kinda of a scaredy-cat when it comes to dogs and cats, but by the end of the week, Nascar had grown on me. I only got to see Papa for 2 days because he had to leave to take a load to Florida...he is a truck driver. He got to see how big I've grown and how long my hair has gotten.