February 2009

January 2009

Christmas Day

Christmas Eve we went to Grandma's for awhile and then mom & I came home and basically had a normal evening for us. I really don't comprehend what presents are, Santa, etc., so this Christmas for me was about the lights and getting better from surgery. As you can see in the pictures I really was kind of backward to the whole idea. I didn't unwrap my presents. Mom helped me. The church was generous to us. The Relief Society ward members got me new blanket sleepers, socks, tights, boots and a warm hat to wear. The young women also took us on as a "project" and got me some new clothes, filled a stocking with stuff for me and for mom. We both got bath and body works good smelly stuff. Mom feels funny about accepting charity, but also realized how fun it must of been for the young women to pick out things for me and getting me a toy, etc. They also got mom a pink (pink tends to be our color) bathrobe, which shows in the picture of us Christmas morning.

We had Christmas dinner at Grandma's and grandpa's. I saw all my siblings and nieces and nephew, except Jeana's family.

The bestest gift of all, however, was my brand new niece, Jeana & Kurt's baby, Harlyn Marie, born at 3:15 Christmas morning. Mom called it. She told Jeana she'd be born Christmas day, and she was. Mom, also, was the only one who thought she was a girl before they found out. Of course, I knew all this, but I can't tell anyone. Ha..ha...

It was kind of a quiet uneventful day otherwise. When the sun started setting I got anxious and wanted to be home watching Monsters or the Grinch. Mommy struggled a few times and I saw a tear in her eye, something to do about not being a complete family. She is very thankful to have me in her life. She calls me her angel, her mini-savior, and the light of her life, but she doesn't feel complete I can tell. I hope someday she gets the secret desires of her heart and finds a good man who will love her and make her feel special, because she is ya know, but she doesn't feel it. I don't mind so much not having what others call a "daddy" probably cuz I don't have an understanding of what one is, but I do know I have an awesome grandpa, brother and brother-in-laws, and I do know that Heavenly Father & Jesus think I'm someone special indeed. I'm so loved.

Me & mom thinks, Jeana & Kurt got the best gift of all, their own little angel to love and cherish. The greatest gift of all, the gift of life.

My First Experience with Snow

This is my favorite sitting position, usually with my blanky between my legs and my binky in my mouth as well. I'm just so stink'n cute. I'm truly loved <3





Mom was a little excited about me experiencing snow for the first time this year (not because she likes it all that much). It's been kind of my year for a lot of firsts. Last year I was still on continuous oxygen, not walking, etc.

Mom got me a taboggan she thought would be nice to take me down the hill in to grandpa's and back. Well, this cute little tabboggan was like a mini snowplow and we dragged 3 feet of snow all the way to grandma and grandpa's. Mom got her workout both downhill and up, and that has been my first and only experience in the snow this year. I won't walk in my boots, I hate mittens, hats and coats; all are just too restrictive (and mom can't argue that one because she won't wear them either).
So, the pictures are nice, and will be the last of them this winter!! However, I do find it fascinating to watch the snow flakes fall from the sky.

December ~ Surgery

On December 19th Mom got me out of bed at 3:00 a.m. and drove us to Salt Lake to Primary Children's hospital, where I underwent 3 surgeries. Dr. Dries put a J tube in my left tear duct, but the right one was too occluded to pass the tube, so he repeated the balloon procedure he did last year on both eyes, that failed. He stitched the tube in place with absorbable sutures and will remove the tube in January, and hopefully this will keep the tear duct open. If the right eye balloon procedure fails again, then there is a more complicated surgery that can be done, bypassing the tear duct and draining into the nasal passage, but that would require another specialist for this procedure. Dr. Dries also did a complete eye exam while I was asleep and says I have excellent vision :)

Dr. Parks took out my tympanostomy tubes he put in last year. We thought I lost the one in my right ear because it couldn't be seen anymore, but he found it in my ear buried in scar tissue and buildup. He had to do some scraping of both ears to insert new tubes in both ears, but got it done. He also did a tonsillectomy and adenoidectomy on me. My tonsils and adenoids were quite enlarged and obstructing my airway, making it harder on my pulmonary hypertension/respiratory system and heart. With these out of my airway hopefully I will do better.

They told mom I'd be in the hospital 3-5 days, the first night being in PICCU. However, I did so well in PICCU (and they needed the beds) I was moved onto the floor the same day of my surgery. We drove to Salt Lake just ahead of a big snow storm, and came home in another one, the day after surgery. I'm so stubborn and did so well they released me early. I let mom know a few times that I blamed her for my pain and agony, turning my back on her and ignoring her, glancing at her occassionaly just to make sure she knew it too!! If looks could kill...lol

However, my nurses were awesome. They found my favorite Video, Monsters, Inc. and let me watch it all I wanted. Because I wouldn't lie down, and kept head banging, fighting the sleepiness of the pain meds, they got me 6 pillows and surrounded me by them so when I finally dropped I wouldn't get hurt. I soon became known as "the princess".

To convince them I wanted to go home and was ready after my early afternoon nap the day after surgery, I stood up in my crib for the first time since before surgery, yelled "luh-luh" at mom. She unhooked the monitors and I took off running the halls of the hospital with my leads hanging from my bare chest, kissing my shaddow on the hospital floor, waving and saying "luh-luh" to everyone. Suddenly very active and ready to cause trouble.

They soon released me to go home. In Salt Lake it looked like a perfect break in the storms and the sun was out, so mom thought we would get home in no time. Well our 1.5 hour drive turned into 4 hours. It started snowing before Clearfield, a 30 car pile-up accident happened on the Freeway near Willard and they closed the freeway and diverted both directions of traffic through the old highway. We rolled along under 5 mph for miles and miles, got to the mouth of the canyon and noticed it was snow packed as well, and we got home on my wings and mom's prayers, literally. My pain medicine was wearing off, but I still slept through my moans.

Grandpa was worried about us and had called the highway patrol, who told him they recommended chains on all cars through Sardine Canyon. Mom took it slow and steady. By now it was dark and mom's vision is horrible at night, that with the snow packed roads, stupid drivers, etc., her hands had to be nearly pried from the steering wheel when we pulled into Grandma and Grandpa's that night. Mom doesn't remember slipping or sliding much, but since then she has gotten stuck 2x in the driveway, spun her wheels on the icy roads and has had to make a run at them to get up our hill home. The tires are wearing on the Barney Mobile, and she knows we were being watched over on our trecherous drive home on the 20th. Our home teacher, Brother Woodward, with a partner came by on the 18th and gave me a blessing that all would go well, and it has. I have healed fast and well, and we got to and from Salt Lake safely in some awful road conditions.

All on my Wings and lots of peoples prayers.

Mom is very thankful for the protectors who were watching over us.

December

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.

November & Thanksgiving 2008

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.