Friday, December 12, 2008
In December it seems like a switch turned on new parts of my brain. My music box in my crib I've had since I was born would come on if I kicked it, but I really didn't know how it worked. I discovered the little blue birdie was the on off button and now I sit in my crib and turn it on, then off, on then off, just to see it work. I'm becoming a little more obsessive. At bedtime I have this routine; I sit in my crib put my blanky with my binky attached between my legs and cross my ankles, then I gather my pink snake-like pillow up in a U-shape around me and then my blankets. In the mornings I wake up slowly, lie in my crib awhile, chill'n, and when I'm ready for mom to get me up I stand up in my crib and yell "Luh-Luh". She comes to get me, I reached down and with care push the birdie button to turn off my music box and then reach to get out. Luh-luh is still pretty much my standard form of communication, just spoken with different pitches, etc. I can sign a few signs (well more than a few, but don't tell mom. I don't like to use them in front of her or anyone). Besides luh-luh... my other run of words still is Sadie-doit said very fast or Sadie-didit.
I've learned I can resist bedtime and pitch a fit. They say this is a good sign. Mom doesn't think it's all that amazing.
Around News Years I braved it and went down the stairs, alone, on my bottom without mom knowing. When she found me at the bottom of the stairs, knocking on the front door, yacking up a storm all excitedly and laughing, she was amazed. Now I go downstairs often, tipping over the trash can, getting into the laundry and opening cupboards and drawers and emptying everything. Mom's had to do some adjusting to keep me out of trouble as of late. ha..ha.. I just can't stand to see things on a table, cupboard, in a box or basket. I like everything spread out on the floor and all tables cleared of everything. If it's in my way.. it gets dumped out or swiped off the table.
I can now hold a cookie in my hand and take bits of it instead of taking one bit, drop or toss it, when I WANT TO. I still throw my cup, but mom is very persistent in trying to teach me how to just set it back down on the tray. My OT came this month early. He's ready to give up on me, said he thinks he is wasting his time with me. Ha..ha..ha.. that's what I want him to think, but I don't want others to see me progress until I have it perfected. He hinted at autism, but my other workers don't think see it and neither does my mom. He's just frustrated with me because I'm very very stubborn. I still can't use a fork or spoon, and still eat monkey style from the palm of my hand. I can use a crayon, but I still have the tossing reaction to anything in my hands. *shrug* I'm a work in progress! Slow, but I'll get there and in my own due time!
I had early interventions evaluations this month as well, and developmentally I'm between 15-18 months of age. I've watched my nieces all pass me up progressively, but they don't seem to mind. I learn much by watching them. I'm an observer. I watch, study people and then I try things on my own when no one is watching. I'm a bit of a perfectionist.
I am making progress. Mom has noticed that I'm finally taking an interest in how things work. She even caught me playing with a doll. OH! and I found a comb on the floor and have been trying to comb my own hair. Tiny steps..to other children all this little things seem to come so naturally, but I have to really work hard to figure things out. Every tiny accomplishment for others ..is a major accomplishment for me.
In November I got my haircut for the very first time by my sister, Jessica, who cut a total of 7 inches off my hair. Mom had a hard time not bawling. She's such a boob.
Mom & I drove to Eagle Mountain for Thanksgiving dinner at Jessica and Clark's home, and I got to see my brother and 4 of my sisters, my nephew and my nieces. I had a really fun day. I didn't even get anxious or nervous, until late in the afternoon after mom was playing the piano and singing Christmas songs with me, Kinley and Brooklyn, I backed into a corner and started pulling my hair. This signaled mom it was time to go and I slept all the way home.
I have the best family. I get to go to the gym every week and play with Kinley, Brooklyn and Madilyn, and jump on the trampolines and climb. Everything that I refuse to do with physical therapy. I'm very stubborn that way. It has to be my idea and in my own timing, and I refuse to do anything in front of anyone until I know I can do it to perfection.
I can climb up the stairs really well now, and I can slide down them on my bum, but holding onto mom's hand. I probably could do it alone, but I'm not so confident yet. I still sometimes forget how to climb off the bed and out of the rocking chair and couches I love to climb and still biff the floor occasionally.
I got another ear infection just before Thanksgiving, and the doctors think my right tube has come out, so I'm having surgery in December.
Wednesday, September 17, 2008
Today was a wonderful day! It was Grandpa's Birthday and so many of my family members came to the Down Syndrome Buddy Walk to show support for me and my friends. My Uncle Randy and Aunt Sandy came. My Sister Jeni, her husband Thomas, Kinley and Madilyn. My Sister Joni, her husband Steven and Brooklyn. Grandma and Grandpa Gardner. I was so happy Grandma could come. She has stage 4 liver cancer and she doesn't get out much, but Grandma and Grandpa would move mountains for me, I believe, if they could.
The theme for the day was Prince and Princesses. Grandpa came proudly as my Prince. He's not only my Grandpa, but pretty much my father figure. Kinley came as Belle and Madi wore Kin's matching cabbage patch dress. Brooklyn came as Snow White. I handed my Snow White dress down to Brooklyn. Joni's proud. Snow White is her favorite Princess. Me? I went as Cinderella :) and a gorgeous one at that. My mom beems with pride over me. She loves dressing me up and playing with me.
After our buddy walk around the block we had lunch, then we had games like the fish pond and the lucky ducky game, decorated castle sugar cookies and put stickers on our crowns to take home, and a cool pink temporary "Princess" tatoo.
Mom and Jeni don't know it, but me and Kinley are really true partners in crime. I love water so I side-tracked everyone's attention at the ducky came and started splashing the water and trying to get in the lil pool, cuz I love to swim and everyone knows it. While everyone was watching me, Kinley spotted the bag full of prizes, snatched it up and ran ...ran with it with every bit of energy she had. Ha..ha.. what a team we are, but they caught her.. but..ha.. we not only did it once, but ya... we repeated the crime...ha..ha..ha...... Mom and Jeni are gonna have to pick up the pace to keep up with us for the next 20 years. I use my innocence and Kinley she uses her energy to get the job done. After the games we had snow cones and the drawing for the raffles. We won some Disney books, a cheesecake pain, an oil change..and mom won a lip and eyebrow wax at a beauty salon (ouch why would someone want one of those)!
I was asleep in my car seat not even 2 blocks after we left the park. I was worn out, so I know grandma and grandpa, and mom were too, so I took a nice nap at home.
Then, we went to Grandma and Grandpa's for dinner for Grandpa's birthday. I got to see my newest neice, Maeleigh, too cuz my brother Jeremy and his wife Laura brought her to the party. I'm excited to have another "partner in crime". Mom's excited with another granddaughter cuz to her that means.. more "Barbie Parties". Bratz is a dirty word in our house.
My ear is starting to feel better. I was sick again last week and mom took me to the doctor, AGAIN, where they discovered a left ear infection and raging yeast infection, put me on another antibiotic and a cream for my sore hiney. I've been really sore and mom lets me run around without a diaper to air it out, but it's taking it's time getting better because although the antibiotic is good for my ear, it makes my yeast infection grow and even worse, but I'm tough. I take all this uncomfortableness in life pretty good. Mom thinks I'm a real trooper.
I'm here to teach my mom how to enjoy the simple things in life and bah the nagging stressors in life. They aren't what is most important. Life is about loving each other, helping each other, and enjoying the little pleasures life gives us.
Friday, September 12, 2008
Mom took me to the doctor again on Tuesday, Sept. 9, because I have still been irritable and started developing a diaper rash. My left ear is infected and I have a yeast infection in my diaper area, probably due to the antibiotics I've been on. Of course, now I am on another course of antibiotics (10 days) for my ear, a cream for my rash, and I've gone from my bowel obstruction to diarrhea, which all contributes to my sore sore raw bottom, making me very miserable and mommie very sad and feeling at a loss at what to do for me next.
Tomorrow is the Down Syndrome Buddy Walk. My grandparents are going, even my grandma who is fighting stage 4 liver cancer is going to be there for me. My nieces, Kinley, Madilyn and Brooklyn are coming, my cousins Tarah and Alex, my aunt Sheri, uncle Randy and Aunt Sandy. I'm excited I get to wear my Cinderella costume and a crown, as the Theme is Prince and Princesses. If you don't know already, my name Sadie means Princess.
It's also my grandpa's Birthday tomorrow, so we get to party at his house tomorrow evening also. Mom sure hopes I'm feeling better and I can enjoy my day.
My new favorite movie is Peter Pan. We play it over and over and over..again.... I clap my hands and wave them in the air with excitement when it begins. When it ends I sign "more" to mom. Mom signs "more" and says Peter Pan back to me and I flap my arms and giggle.. and sign more again. Mom says.. whatever it takes to get me to sign!
Thursday, September 4, 2008
Mom took me to the doctor yesterday, and of course while there my belly was soft. I didn't see my regular physician, but Mom does like the doctor we say also. He said he could still feel some stool in my bowels and to keep giving me MiraLax. He asked if I was always so quiet and still. Mom said no, that I just learned to walk and is usually all over the place, checking things out. He asked a lot of questions about my health and asked mom if she knew I had a very loud heart murmur. Mom said, yes that was normal for me. He told mom my symptoms could mean several different things, that with the many health issues I already have complicates things, from my thyroid acting up, stomach, heart, etc., etc.
So, he advised us to go home and if I wasn't feeling better in a few days to come back and they would run more tests.
That afternoon I drank some Pedisure and my stomach bloated up, swelled and got all tight again. I got clammy and sweaty a few times, similar to when I have had heart issues in the past. Mom's been so worried. Last night she just broke down after putting me to bed. She's been praying extra hard for me lately.
This morning, however, I woke up, ate some of my Barbie waffle, drank a cup of soy milk, later a cup of juice, but refused lunch. I've been more active, playing, walking around the apartment, laughing, waving at myself in the mirror and acting more myself. Mom thinks even my color looks better. We are hoping this is the end of my current round of whatever has been going on with my body. We are all worn out with worry and the stress of it all.
Monday, September 1, 2008
Sunday I still didn't want to eat. All I had yesterday was a couple bottles of Soy Milk and couple crackers. I had just a couple small bowel movements since the one in the ER. Today I was whiney and lied around a lot, wanting mommy to hold me, but she had to work at the computer. It was the last day of her pay period and she's been behind on work. I slept 11 hours last night. This morning I took a couple bites of my waffle and drank my milk, visited grandma and grandpa, ate a few fries and drank a cup of apple/cranberry juice, and then went to the gym with mom to clean. I slept off and on today. My grandma rocked me and I fell asleep just a couple hours after getting up. I don't want to walk, crawl, or play. I didn't even want to jump with kinley at the gym on the trampolines. I just don't want to do anything. Tonight I drank a little more juice, my tummy started huring and swelled again, and got tight. I had a couple really wicked diapers, and then I fell asleep. Mom's got a feeling something isn't right, so if I'm still not acting or feeling right tomorrow we'll go back to the doctor, maybe get another x-ray to see if I cleared my bowels. I'm just so tired... Mom's going to pray harder for me tonight than usual. She's really worried and cries easily when she looks in on me.
Sunday, August 31, 2008
I went to the zoo Saturday with my sisters,brother-in-law, and nieces, Kinley (who is more like my twin), Madilyn and Brooklyn. I'd been sick with a sinus infection, but woke up with my usual smile, so mom decided we'd try the trip to the zoo. I started hurting and crying on the way to Salt Lake. Mom was worried. I wanted to tell her where it hurt, but I didn't know how. I never cry, unless I'm in pain, so I guess that's how mom knew something was wrong.
The zoo was busy. Kinley sure loved the monkey's. She loves all animals. I don't like them much, but I did smile and wave a little at the 2 bears playing with each other. Mom decided to leave the zoo early. My sister, Joni, noticed my tummy was big and tight and told mom...then mom became really concerned, so we went to Primary Children's Emergency Room, where I got x-rays, an IV line with fluids, and when the x-rays came back showing a blockage in my colon they did an enema on me. Mom says I'm really brave. I didn't even cry when they stuck me with the needle for the IV. Kinley insisted on being by me and played nurse to me. I just wanted that IV out, and kept tugging at the tape and gauze. The nurse did a really good job at keeping it on me tho.
After the enema produced a good bowel movement, so they let us go home. Me and Kinley slept the whole way home. Boy was I happy to be home. I woke up for my night medications and watched an episode of Elmo's World, and slept the night through. I'm really tired.