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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
I had a silly moment this morning where I felt like I was being a nark. About my own child, to my husband. I’ve recently married, moved, started working full-time in a real office 25 minutes away from home, and my husband is homeschooling the Princess. Needless to say, I don’t get a lot of one-on-one time with my daughter anymore. A fact that I enjoy more than I care to admit, …. sometimes.
This morning I was doing some toenail care, you know that awkwardness of a 50 year old body trying to get to her toes, and make sure the nail clippings fall in this little bitty wastebasket, so you don’t have to lean over or crawl around on the floor to pick up the “droppings”.
The Princess strolled in, checked herself out in the mirror and proceeded to be interested in what I was doing. Out of the blue, she asked “Do you know what that bloody tissue is for?” I hadn’t noticed it, so I glanced over for a quick look. “No”, I replied. She reached in and picked it up. I’m cringing and telling her not to pick it up. It could have been where my husband was shaving and nicked himself, but to myself I was thinking, that sure is a lot of blood.
She announced that she fell, face forward on the carpet, landing on her nose and it started to bleed. I asked her if she had told Dad that she was bleeding. She said no, it didn’t bleed that much, it wasn’t bleeding now and it didn’t hurt. Oh, and I got a demonstration of how she fell. And, like a mom, I’m telling her to be careful or she will bump it again and start it bleeding.
I proceeded to the living room and talked to my husband about it and he said it was the first he heard of it. He promptly goes into the playroom and confronts her. Well, “confront” is maybe too strong a word. He ASKED her about it, she told him the same story, and attempted the demonstration again. He told her that next time, she should just tell him about it. He needs to know these things.
So later, I’m thinking what a nark I was, and laughing to myself. I was even doing the adolescent thing of peeking over my husband’s shoulder while he was talking to her, watching her reaction. She didn’t say anything to me but I can only imagine what she was thinking… “Mom told on me”.
I’m such a nark, and a nerdy one at that, lol.
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.
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!
I joined Joy in a square Toy Hunt this week. I didn’t think I was going to find any toys that were square either, but I managed to scrounge up a few. Thanks for a fun meme. Happy Easter!
Current Mood: Playful