We are Livin’ Life, Losin’ Sanity, and Lookin’ Forward — training a special needs princess.  Leah Rose was diagnosed with  Freeman  Sheldon Syndrome aka Whistling Face Syndrome, Arthrogryposis, Glenoid Hypoplasia, and a midline cleft in the soft palate (repaired Sep ‘04).

Please be patient while I finish updating this blog.  I am transferring my journals from the original web site.  Some of the posts contain my notes for me to finish.  Feel free to browse, but please do visit again and hopefully I will have all of the posts finished soon. Start here for the First Entry

Tweet This Post

 We spend way too much time in the doctor’s offices.  Leah Rose can now carry on her own personal conversations with the specialists.  A couple of years ago, we couldn’t get her nose unglued from the Nintendo DS screen to even look up at the doctors when they were talking to her.

Since Leah had her ear tubes removed in December, we have been seeing the PN at the ENT surgeon’s office every 6 weeks.  Today was our last visit.  We were dismissed from care with instructions to return if problems occurred.  We have been in their office so many times, that Leah can now tell me what is on the posters hanging on the walls of the exam room.  While we were waiting for the PN, she started talking about the poster, about allergies, and pollen, and fungus.  She informed me that she was going to be a doctor when she grew up.  I asked her what kind of doctor?  A doctor that takes care of children?  No.  A tummy doctor?  No.  An ear doctor?  No.  A bone doctor?  No.  Well?  An allergy doctor, so she can take of Mommy’s allergies.  Ohhhhhhh. 

Today was a day where I just sat back and watched.  The PN asked if she had been feeling okay, she replid yes, but her friend from school and his sister had ear infections and a fever, but she was okay.  She told the nurse earlier that she used to have ear infections and a fever when she was a baby.  The PN asked if she had a runny nose?  No.  Sore throat?  No.  Ears hurt?  No.  Can she hear okay?  Does she say ‘huh’ a lot?  No.  The PN giggled and said I bet Mom would say different on that one.  I just sat back and watched.  Oh, so much less tramatic than it was a year ago, with the fighting and the screaming.  Of course, we had to check the kitty’s ears too.  Cuddles always goes with us to the doctor.  Cuddles got a clean bill of heatlh too.

And, yay, we are off our restrictions…  we can sniff, have straws, lollipops, and go swimming now.  No more ENT visits, no more audiology tests.  YAY!

Later this evening Iwas thinking about how smart Leah is and how very aware she is of everything around here.  She just soaks everything in.  I remembered her chattering at me this morning.  We gave her a quick shower this morning since it was Spring photo day at school.  As soon as she got out of the shower, she rushed to the bathroom.  When she got done, she informed me why she had to go pee so soon after getting out of the shower, because the water went up and it came back out.  Okay, I’m not overly squeamish, I can talk poop with the best of the moms, but that was a bit much for me.  She can now almost list all of her surgeries and explain why she had to have them.

Oh yeah, I see medical school in her future. 

Tweet This Post

Well, Leah Rose loves to go bowling.  This may be one of the things that she may not manage for a very long time. 

Today, we went to a birthday party at the bowling alley.  This has been our 3rd trip this year so far.  I was watching all the other 4, 5 and 6 year olds pick up their bowling balls and throw them down the alley.  Leah can pick it up, but her fingers just can’t fit in the holes and grip the bowling ball.

About halfway through the game, I was picking it up and carrying it to the line for her.  She also doesn’t have any power to get it down the alley, so I was helping her push it.  When we have been before, it’s just been us and not very crowded. I usually let her push it by herself and it sloooooowly rolls down the alley.   Today, just after we started playing, her ball just stopped rolling, right in the middle of the alley.  Not thinking, I hopped up on the little sideline thing and walked down to push it along towards the pins.  Big mistake, I don’t do very well in a balancing act.  However, I did not fall, thank goodness.  But I did see two other parents in our goup go down chasing little ones trying to run out down the alley.  OUCH!

So from that point on, I helped her push it.

I know nothing about bowling.  I probably won’t ever know much about bowling.  I probably won’t ever score over 65.  But, who knows? Leah may be playing in tournaments one day, and be a bowling star.

Tweet This Post

Last night, we went to a Wild West Dance and we were told to dress-up because there would be a contest.  I thought this would be a perfect opportunity for Leah to wear the cowgirl outfit I made for her for Halloween 2008.  First, I want to share a little background on the outfit I made…  I had a red and black one when I was about 5 years old.

I was such a cutie pie!  I loved it when my daddy took pictures of me.  So, anyway, here is the one I made for Leah Rose

I think she looks so adorable, and she’s got the pose to go with it.

I really thought Leah would have a lot of competition for the contest, but it turns out there were only 2 other girls that dressed up.

and the winner is…. 

Leah, the Best Dressed Girl.

She had the best time dancing on the stage. 

I thought it was so cute that the little boy was trying his best to keep up with Leah.  This is where she stayed the whole time we were there, and had a blast.  I think at the end of this video, where she is wandering around looking lost?  I think she was looking for the speaker.  She couldn’t tell where the music was coming from.

We had our picture taken with John Wayne.

I usually don’t share pictures of myself, but since Leah took this picture, I had to post it.

A good time was had by all.  The PTO sold hot dogs, chips, drinks, and snacks.  I was grateful because that was the only supper I was going to get last night.  It was pretty tasty. 

I’m going to have to keep an eye out for the paper because there should be an article about the dance, and the winners!

If you want to see the rest of the photos, click here ==>> Photo Album

Or if you want to see the slide show, click here ==>>  Slide Show

Leah Rose – 6yo (3/4/10) 

Oh, and Horsey, I think he had a good time too.

This post has been linked up to To Be Thode’s Saturday Sound Off.

Tweet This Post

I am considering starting a new blog, an adventure for Leah Rose and I.

Leah is such a girlie-girl and she loves all things pink.  She can chatter on for hours about the color pink, and all the things she loves that are pink.  She has pink clothes, pink blankets, a pink bed, pink chairs and tables, even a pink TV.

Leah also loves to take pictures.  I’ve started letting her use my digital camera and sometimes her photos come out better than mine (I am NOT Jealous).

So, I’m thinking of starting a blog called “A Pink a Day, Girlie Girls in love with Pink”.  Every day we would post photos of something pink… a photo she takes, and a photo I take.

My child is so aware of my social networking… she understands email, and texting, and my blogging…  6 years old, and she is already telling me, “send so-and-so a text to let them know…”  It won’t be long before she knows more about computers and the internet than I do.  I’m sure she already knows more about baseball than I do.

We are trying all kinds of new things lately. 

• Little League Tryouts
• A Postcard exchange with some of the children of my Facebook friends
• I’ve made inquiries to get her started in Daisy Scouts.
• I volunteered to become the Preschool Plus Playgroup for the local MOMS Club.  This month we are meeting at our house and I’m planning on a craft activity…  Chick Hatching Egg Carton Craft

Tonight we are going to a Wild West Dance, Friday we are going to Jumpin’ Jax, and Saturday a birthday party at the bowling alley.  Whew, what a little social butterfly she is!

Tweet This Post

… I don’t smell like a rotten egg.

This has been a recurring game that Leah Rose and I have been playing for a while.  I know Leah loves me, she tells me so all the time, and I’m always getting sweet hugs.  But, when we get around Grandmother or Big Brother, I’m chopped liver.  When we all go out to eat together, the big decision is who is she going to sit by.  I’m never one of the candidates for a table buddy, it’s always Grandmother and Brother.  I am NOT jealous, uh huh, no way.  She has secrets to share, and shares them with Grandmother.  I am NOT jealous, uh huh, no way.  When we are all walking together, she wants to hold Grandmother’s or Brother’s hand,  not mine.  I am NOT jealous, none.  whatsoever.  It’s a new word and new emotion for her, and she hasn’t quite figured out what it mean yet.  I’m waiting for the day when the light bulb comes on.  Should be priceless.

The other game we have all played at some time or other in our childhood…  “Last one there is a rotten egg!”.  I have heard that so much lately it’s starting to become a chant in my head.  Since my mother had her hip surgery two years ago, she walks even more slowly than usual, and to get Leah in the car in a reasonable amount of time…  she takes the long route around, circling all the bushes, and running down all the sidewalks… we would tell her “Let’s see who can get in the car and get buckled in first”.  Leah would take the bait.  It never failed.  After a while, I noticed I was always the last one getting in the car and buckled in.  I would respond with a lot of muttering and grumbling under my breath.

Now, I’m the rotten egg.  Grandmother and Leah are a “team”.  So it doesn’t matter what I do, I’m always going to be the “rotten egg”.  And I’m not jealous.  That’s my story and I’m sticking to it.

Tweet This Post

While cleaning up my daughter’s drawings the other day (this is usually how I find the really good stuff), I came cross this drawing she did in crayon.  I believe this may be Gary from SpongeBob.

Click here to visit Magic Marker Monday on 5 Minutes for Special Needs.

Tweet This Post

Lately, I have been considering getting Leah Rose started in some type of sports or recreational activity.  I did check into the Georgia Special Olympics online, but from what I’ve been able to figure out, she may not qualify since she is not developmentally delayed.  She wanted to play soccer, and I think that would be good, but another opportunity came along that I think may be better.  The Warner Robins American Little League were World Series Champions in 2007 and have been State and Division champs repeatedly.  Tryouts for the 1st annual Challenger Division for the WRALL were held this morning.    There were 75 kids there to tryout.  The players participate in one of two levels, tee ball and coach pitch, based on their playing capability rather than their age.  Two local high school baseball teams were on hand to be “buddies” to assist or show each child what they were supposed to do.

Leah Rose had a mixture of emotions about it… first she was very confident, I can hit the ball and I can run fast!  Next, she is shivering in her boots and her chin is quivering because she is afraid of what will happen.  Within the last few minutes before her name was called, she was saying “I don’t want to do this”, but when they called her name, she got up and walked down the bleachers to the gym floor.  The Coordinator introduced her to her buddy “C”, who was almost as tall as Leah’s brother is (he’s about 6’3″ and if you count the mohawk, he’s 6’6″).  I was very surprised, Leah went right to her buddy and followed his instructions.  Although, I don’t think he was expecting her to be such a chatterbox, lol.

Leah is the one in the pink shirt and black pants, standing to the right of #18.

Her time came up to bat, she swung and missed.  Then she put the bat on the floor, rubbed her hands together (to warm up), picked the bat back up, swung, and hit the ball.  I should have had the video camera going, but pushed the wrong button on the camera (annoyed pout).

She got a chance to hit the ball, to throw the ball, then hit the ball and run to first base.  When she started running, she stopped to pick up her bat and carried it with her to first base.  She was the 4th one called, I think they were starting from the youngest to the oldest.  She had everybody giggling at her high drama antics.  I have no idea where she has seen baseball, but she has the “exaggerated” actions down pretty good.  Must be from cartoons, although I don’t know which cartoons she has been watching that has baseball in it.

She was then sent over for some fielding.  She had to catch the ball that was rolled to her and then throw it back. 

She did pretty good with the catching part, but the throwing…   well, there was this wild wind-up that had me giggling inside, but  outwardly wishing she would just throw the ball already.  Again, no video.  Next time, I’ll be prepared (determined pout).

We were told we would hear back from the coach in a couple of weeks.  Practice should start after the weather warms up a little bit.  I think she had fun.  I enjoyed it a little (I never like to admit I enjoy anything… grumble, grumble).

I did notice one thing that may be a problem for her.  It’s not anything physical, or an understanding of the game itself.  She is very smart.  It’s the standing around waiting her turn.  THAT will be a problem.  I don’t know where she gets that from.  I am NOT impatient in the least (smirk).

It should be an interesting Spring!

Tweet This Post

Self Portrait

I let Leah Rose use my camera one day and this is one of the pictures she took of herself.  I added the picture frame in Paint Shop Pro.

Click here to view other Special Exposure Wednesday participants at 5 Minutes for Special Needs.

Current Mood: Happy

Tweet This Post

Click here to view other Wordless Wednesday participants at 5 Minutes for Mom.

Click here to view other Special Exposure Wednesday participants at 5 Minutes for Special Needs.

Cick here to view my Georgia Angel Wordless Wednesday post, hosted by Wordless Wednesday HQ. 

Current Mood: Happy

Tweet This Post