Sunshine Sadie Mae

Tuesday, October 6, 2009

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.

1 comment:

Travis and Rochell said...

hey I love Dr Dowse. I take my kids there too. Also I hope that they refered you to Dr.Pearson the ENT he is the best. He also does sleep studys.