Tis the Season to be Snotty ... luh..luh

As usual I've been fighting congestion and runny nose, and this morning I woke up fevering and listless, so off to the doctors office we went. The doctor said it looked viral, but my eyes were infected so she was going to only give me eye drops, but then decided to run a CBC and as it turns out my white blood cell count was borderline high with a differential shift, leading to possibly bacterial infection, so I left the office with 2 prescriptions for antibiotics. They also ran a H1N1 (swine flu) nasal swab test. I did not like the bandage on my finger and kept poking inside it and got blood on my other fingers, and mom eventually helped me take it off and clean my hands.

Earlier in the year mom kinda thought everyone was overreacting about H1N1, that it wasn't going to be anything worse than the seasonal flu is. Well, she was wrong. She made the mistake of watching the news today and getting the stats on deaths and risks it is to the young and those with underlying medical conditions such as I have, and she had a full blown panic attack.

The new doctor and PA in training were impressed with my heart murmur. Most doctors are. I have a very musical heart.

After the doctors and the pharmacy mom got medicine down me. I was fevering when I went down for a nap and when she checked on me a couple hours later my clothes were soaking wet in my sweat.

I guess I kind of made the final decision on whether we'd go home to Cache Valley this weekend. We miss the girls soo much, grandpa and Toto too..

It's the last day of the pay period and of course mom isn't going to make her line count.

Mom said she wants to just lock us indoors till spring and pray I don't get really sick. She says we've had too many losses this year.

I woke up from my nap a little more chipper. Enough to trash the apartment again at least and give mom lots of hugs and kisses.

I'm the light of my mom's life.

October is Down Syndrome Awareness Month

October is Down Syndrome Awareness month, as well as Breast cancer awareness month; so hug an Angel and buy Pink, PinK, PINK....

We established care with a local pediatrician yesterday and got my flu shot. We really like Dr. Dowse and he said I'm just absolutely adorable, and mom told him, yes, yes she is and she knows it. tee*hee.

I've gained 3 lbs since we moved here! I now weight 30 lbs and I'm 35 inches tall, which puts my weight in the 30% range, height 5%, and weight for height 90%, short and stout.

Dr. Dowse also referred us to the eye doctor, ENT doctor and dentist, and informed us that a cardiologist from Primary Children's comes to St. George monthly, so that will save us a trip to Salt Lake in the spring for my EKG.

My right tympanostomy tube has come out and is just sitting in the ear canal, so I may have to have that replaced. If the ENT doctor feels comfortable with sedation and my heart condition we may have it done here versus Salt Lake, but we'll see. It makes mom nervous. We also may need to have a sleep study done too.

I have an appointment with the dentist Monday, but not the other doctors as of yet. There are so many adjustments and changes in moving.

I'm really wanting to talk as of late. I try singing Baby Mine with mom when she rocks me to sleep, trying to move my mouth, lips and tongue like mom does as she sings. Friends sent me a dancing Kids Songs DVD and I love to dance. I've learned to kick one leg out in front of me and I try to jump, which are some things physical therapy have been working with me to learn.

I love the Halloween decorations and love the lighted pumpkin on our porch. I really got upset with the windstorm when it blew my pumpkin off the table and we had to bring it in. Mom said this tying everything down will take some adjusting to. In Cache Valley everything just froze in place!!!!! I get really excited when mom turns the lights on at night. Christmas lights are going to be totally amazing. It's so exciting to notice all the wonders of the world suddenly. There is so much to take in. What a beautiful world God has created for us to live in.

Mom gave me popcorn last week for the first time and I'm thinking I like it, which surprised mom because there are not many foods I do like.

My skin is dry here. My cheeks and chin are chapped from the wind and dry air. We keep the humidifier going night and day. However, I like the breeze. I raise my hands high above my head, look up and squint my eyes and squeal as if I am flying. Mom isn't so fond of the "breeze", but when my sisters reported it was snowing in Cache Valley she didn't feel so bad being isolated here. Jeana said MOM don't you dare come back here, Winter sucks!!! But, we'll see. Mom's allergies in the fall aren't kind to her and with it even more dry here she is miserable.

When mom sneezes or cough I try to do the same. I'm starting to imitate more. I even took a tissue and tried blowing my nose. Mom loves watching me learn and catch onto things. I even try feeding mom my food and saying ummmm....mmmm...mmmm to get her to eat it.

Yesterday I stuck my finger in a little boys mouth at school and he chomped it. My aid and teacher both felt really bad. Mom wouldn't have noticed I don't think if the teacher hadn't of called, but yup I have 2 lil bite marks on my ring finger, which turned a little red last night so we are watching it, but we don't think it will get infected. The doctor asked mom if the boy has had his rabies shot. ha..ha.ha.. probably not.. but mom said, I'm sure he had boy cooties.. tee*hee.

Mom has a big box of hand-me-downs for Madilyn. I've outgrown most everything. Mom stuffed me into a blanket sleeper the other night and told me to suck in my Buddha belly so she can zip it up. Same goes for my jacket. Mom said we need to get some new clothes for me, starting with some hoodies, jackets and blanket sleepers. It's cooler at night now and I don't sleep with my covers on.

We are going to have to arrange our time and finances and make a trip to Cache Valley before the weather gets bad. Mom's not sure how many trips Barney can make anymore. We have a box of stuff for Braxton and a box of clothes for the nieces. However, it's kind of hard on mom thinking of going to visit. She misses everyone really bad and all, but it's hard to face that Grandma is really gone. So we'll see.

We are still pretty isolated in our little spot here, but mom says we are going to start going to church regularly and start socializing a little, but I'm working on a cold. It's that time of year where we lock ourselves up in our bubble, outside of school that is now.

We do have a friend here, LeAnn, who has a boy with DS, and they have offered to help out with me anytime mom needs a break. Mom says LeAnn is our Angel Friend here in Cedar City. She has been so helpful and kind to us.

We still get a little homesick. Mom still cries some nights after Kinley calls. We sure miss my nieces and sisters. Yet, we feel pretty comfy here and settling in pretty well in spite of missing everyone and things not working out here like we had hoped, but we still feel this is where we belong.

The beatitudes of friends of exceptional children

Blessed are you who take time to listen to difficult speech:
For you help us to know that if we persevere,
We can be understood.
Blessed are you who walk with us in public places,
And ignore the stares of strangers,
For in your companionship,
We find havens of peace.
Blessed are you who never bid us to "hurry up",
And more blessed are you
Who do not snatch tasks from our hands to do them for us,
For often we need time rather than help.
Blessed are you who stand beside us
As we enter new and untried ventures,
For our failures will be outweighed
By the times we surprise ourselves and you.
Blessed are you who ask for our help,
For our greatest need is to be needed.
Blessed are you when you assure us,
That the one thing that makes us individuals
Is not in our peculiar muscles,
Nor in our wounded nervous systems,
Nor in our difficulties in learning,
Nor any exterior difference.
But is in our inner, personal, individual self
Which no infirmity can diminish or erase.

~Author unknown~

Sadie's weekend

After trying for months I finally did it and I can do it repeatedly now. I can fit mega blocks together!!! Mom was so excited... she cried. ha..ha.. and took a picture, of course. She's so proud of me!

Mom also got out my toy bucket and other buckets and let me play in the water outside. Summer's over and we finally got out in the sunshine. Mom and I usually are so brown by now from living at the swimming pool all summer. This year we went 2x. The year has just flown by us. I had so much fun! I also figured out water comes out of the hose and was really fascinated by it. Mom sure had a good time soaking up some sun and watching me play. I don't like to walk on grass or play on grass, so I kept trying to get to the bucket a different angle through the rocks, but that didn't work good, so I stayed on the pavement. I'm so OCD about some things.

Our neighbors invited us over for Michelle's Birthday (the little girl who lives 2 doors down). She turned 4 and got a swing set for her Birthday, so mom and I went over and I played on the slide. I wanted to swing, but I can't balance on regular swing seats, so I stuck with the slide and jumping on their tramp or tried to jump. I usually just sit and bounce, but this time I actually stood up and tried bouncing myself. I'm trying really hard at doing things.


I was really excited this morning to get on the bus. I came home and at first was excited to see mom, but I turned around and looked at the bus and cried, which is very very unusual for me. Mom hugged me and took me in to feed me lunch. I threw my food on the floor and screamed. I drank my milk, but was still very grumpy. Mom noticed they changed my shirt at school, which isn't a surprise. I've been drinking out of my sippy cups really good for a very long time, yet in the last couple weeks or more a lot of times I get too much in my mouth and let it run down my shirt and onto my pants in large quantities, soaking everything. Mom's really puzzled why I'm doing this. Mom tried putting me in my crib for a nap and I threw my blankets, George and my binky out and cried and screamed, again very unusual for me. Mom then rocked me and sang Baby Mine to me til I fell asleep.

Hopefully I wake up happier this afternoon.

But mom has a feeling we need to work on communication and behavioral issues more. I'm so frustrated, and mom is too. She wants to help me, but doesn't know what I want or need. I learn things, do them well awhile, and then don't do them again.

I'll learn.

School does a girl good

Mom looked in on me yesterday while I was playing in my room and this is what she found much to her surprise. I generally eat and rip up books, yet I was sitting my Elmo chair turning "paper" pages in the book Monsters, Inc., and carefully "reading" studying the pictures. Mom was soo excited she got the camera. Turning pages means I'm learning fine motor skills. I'm starting to take note more and more of my surroundings and how things work. I now say Hi, Hi, along with my yay yay and bye bye, and I grab mom's arm when I want something or hang on the kitchen counter. I'm starting to indicate I want something and learning what communication is all about. I've been struggling for weeks on how to put Mega blocks together, but I'm determined. Mom sits with me and shows me and helps me and sometimes I can do it, but lots of times I just get frustrated and throw them. With lots of patience and persistence I'll learn, just at my own pace.

My New Nephew Baby Benjamin

Baby Benjamin was born September 14, the day after my Grandpa's birthday, to my sister Joni, her husband Steven and niece Brooklyn. I now have 5 nieces and 2 nephews. Mom is so relieved he's here. Steven is in the Army, but still in training and Joni has been alone in Alabama. We have missed them sooo much since they moved. Mom will feel better now that he's here and Steven is home for a 10 day leave and will be out of training soon. Mom felt bad we aren't in Alabama to help with Brooklyn and the baby. We considered going to Alabama to live for awhile this summer until Joni got settled and Steven could be home with her, but mom felt very strongly we needed to move here, and now she's wishing she'd gone to Alabama. We are more alone now than ever. We still don't know why we are here. Why would God send us here to bring us more pain and loneliness? A test of faith? Mom says it's time for a break. I think we should take a Disney cruise... but mom is thinking, ya me too, only we took out a loan on the only thing we own and that's our junker Barney mobile, to have the money to move here. Now we have a loan to make payments on, are away from family, left our piano behind, and on and on, only to discover we really don't belong here either.

So, I guess we make the best of things while we are here until we can figure plan B, which is to figure out where we want to spend the rest of our days, buy us a little cottage somewhere with a fenced in yard for me to play safely in, maybe get me a trained guard dog, plant flowers, run through sprinklers and play dolls the rest of our days here on earth. Mom says she's done looking for someone to share our life with and be part of our lil immediate family. She says anymore the risks aren't worth it and she won't expose me to boyfriends and men who could harm me, and when mom's crying or sad I'm sad too. I'm very very sensitive to feelings and even when mom tries to hide it I can sense her sadness and pain, and it makes me hurt, and she doesn't want me in that kind of environment. We just lost the last man she'd ever trust her heart with again and who would be kind to me. Mom says maybe we'll move close to Kinley and we can go to school together. I really miss Kinley, and my other nieces. We took a lot of risks in coming in. We came here on inspiration and in faith, and yet even though mom's hurting really bad inside, missing grandma and losing this relationship here, she still feels some peace that she can't explain through her tears. She still refuses to believe it was a mistake in coming here, which she really cannot explain.

Mom thinks maybe we'll go visit Kinley sooner than late October now, but we'll see. Gas is expensive, so going home to visit isn't as easy as we'd hoped it would be. The weekend of the 1st is UEA weekend and I won't have school and we can have extra time visiting.

Besides... October 1 is an Anniversary for mom that won't be celebrated this year or ever. She met her love October 1, here, 5 years ago, and she doesn't want to be here, alone, and sad.

More about School

I get so excited for the bus in the morning that I don't eat much. I just want my shoes and backpack and out the door. I pause in the driveway when I see the bus coming and flap my arms and squeal. Th love riding the bus. I come home just as excited to see my mom and she is very happy to see me. She says she really misses me when I'm gone, but happy I'm learning so much.

We are learning about colors and shapes at school and I brought the mouse hunt game home and signs to learn for my colors. Mom wasn't too excited. She was hoping we wouldn't have keep learning sign language, but guess what... we are! Mom doesn't think she can learn to easily, but for me... she will. A friend directed us to a link that actually video demonstrations of actual people making the signs, which mom thinks is a lot easier to learn than trying to learn it off a paper.. So let the fun begin.

I'm understanding the word "No" more and more. Order and discipline in school is a good thing. Sometimes people forget I'm not actually mentally 3 years old, but more closer to 2, and expect me to act more mature.

Mom got Direct TV yesterday so now I have a lot of TV I can watch, but I was so tired last night and got overstimulated by watching a show about whales in the water that mom had to turn it off and get me ready for bed. I love water.

I like to have the bath water running when I'm bathing and I can turn the water on myself, so mom lets me run it and when the hot water is gone, my bath is done, and I pitch a fit about having to get out. I'd stay in there until I turned blue. Mom says we need to find a pool around here so we can go swimming and get me some lessons.

We haven't been to church here yet. Mom chicken's out every week. One week I was sick and last week mom was too emotional. So, obviously we still don't know anyone here, and things fell apart with the few people we do know here, and yet mom still feels we are supposed to be here. It's strange.

We miss our family a lot and mom told Kinley that maybe in October we'll go visit on a weekend for the pumpkin walk and take our walk and do pictures at First Dam like we do every year. Kinley's having a hard time with us being gone. She thought she was going to see us when she went to another Grandma's party the other night and she cried and pitched and fit and wouldn't give the other Grandma her picture she colored because she said it was for "her marmma" (which is what she calls mom). Mom cried when Jeni told her how hard it was to get Kinley calmed down. Mom said moving here has been much harder than she thought it would be, especially given the fact that she was possibly mistaken for the reason why we are here and sad about that.

Another thing we have learned here is that I can't leave my sand bucket out or my balls out because the wind blows here all the time and blows things away. We had the mountains surrounding us back in Cache Valley and rarely felt any wind. There are also a lot of rocks!! I love to sit in them and play with them, scooping them up, etc., and I also like putting them in the mouth, which mom says NO to and "pft".