Broccoli

Raw Broccoli:Sadie's item of the day to carry around.

Rheumatology appointment

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.

New shirt and soooo cute

Sadie's all ready for school this morning in her cute new shirt!

So what's going on these days....

So what's going on these days....
Autumn has been consumed with getting everyone back into the routine of school... including me, and I'm not a morning person... So getting everyone up including myself has been tough.  It all starts with the evening routine... dinner, bath, both girls to bed, and then I'm so relieved to lay in bed and watch a show, that I totally give up on the idea of packing lunches and getting everyone ready the night before.  So this leads to stress in the morning... backpacks, finding lost shoes, packing lunches, making supplemental drinks for breakfast, constantly pushing Sadie to drink her drink, changing a poopy diaper, getting her fully dressed (she is unable to dress herself), and finally out to the bus in time.  All the while, Shelbi needs to got potty, I need to get the tissue that is stored up on a shelf (so Sadie won't unroll and play with it), putting a show on and meet Shelbi's needs too.  Once Sadie gets on the bus, the hustle to get Shelbi off to preschool, and flash. three hours of preschool fly by... Sadie gets of the bus a few hours later, and puff... it all starts over.  I'm pooped.
Medically, Sadie's been fine, I've been making larger supplemental milkshakes for her and she's been feeding herself a little better these days.  She looks healthy and even has a little belly and I can pinch a little inch on her hip.  She's lost 2 top baby teeth and 2 bottom baby teeth.  One top adult tooth and one bottom adult tooth have come in filling the gap that was once filled with 2 teeth.  Her bottom six-year molars have come in with a defect called hypoplasia (http://www.identalhub.com/article_enamel-hypoplasia-370.aspx) essentially meaning they came in missing enamel. Since she won't still still during a dental cleaning, we are forced to put her under anesthesia to have both teeth crowned.  Her dentist is also going to pull 4 baby teeth in a series of pre-orthodontic pulls to give her adult teeth room to grow in.  So in a few more years, she will have 4 more baby teeth pulled to give room for the next set of adult teeth to grow-in straight, which might prevent her need for braces, I can't even imagine how on earth we would be able to get in her mouth to do that.  Since she hasn't had a cardiology appointment in nearly 2 years, our local children's hospital is coordinating with the dentist to have an ultrasound on her heart before her dental work at the same time she is under anesthesia, so that she will only need to be under anesthesia once. You can read more about this from my post nearly 2 years ago when she had a sedated ultrasound on her heart then... (http://sadie8p23point3.blogspot.com/2010/02/echo-under-anesthesia.html)

missing 2 top front teeth and one on the bottom

Behaviorally, she's been just as happy as always, smiling, snuggling, sweet as can be, making the best eye contact, and she has the best sense of humor, just giggling when you smile at her.  She even has a little mischievous side... she will walk over to something she knows she can't have and quickly grab it, laugh, and run away.  She still empties out every cup she can get her hands on and loves to watch her water pour out of her straw-sippy cup.  We are always avoiding drinks being left out.  In fact, she just grabbed Shelbi's crayon/marker bucket and emptied it out in a pile on the floor.  She grabbed several markers and is marking on the bottom of her feet and belly button.  It is so hard to keep things out of her reach and also attempting to teach her appropriate behavior at the same time.  I focus on altering and modifying her environment so that we avoid taking from her all the time and also the stress of keeping one eye on her at all times.  I know she gets very frustrated when I'm constantly telling her no and grabbing, so my motto for her is out-of-sight-out-of-mind.  I've been Sadie-proofing our house again, adding another gate to the kitchen for safety and adding magnetic locks to some of our cabinets, since she can now reach her arm into the crack of the door with the other child locks and she can still pull things out.  Our neighbor was kind enough to cut her bedroom door in half, unfortunately, I'm afraid she will get up in the middle of the night and get hurt, so we can at least close the bottom half of her door so she is safe in her room during the night.  Of course, we still have a baby monitor in her room too.  I'm so thankful that she is such an amazing sleeper and goes down to bed so easily.  I think she is so happy to have her space in her room, that she just falls asleep so quickly.  I just worry about her waking randomly and figuring out how to get out of our house.
She was great at Thanksgiving dinner last night. I'm thankful she is sitting still for a few minutes and even watching TV for a few minutes.   She didn't try to flip any plates over, and she loved the spinach dip and crackers.  She happily grabbed handfuls of dip.
She's doing great in school, even though her inclusive time with typical developing peers is VERY limited, we are happy that she loves school and gets excited to get on the bus every morning.

Einstein

cataracts

Sadie's annual eye appointment was last week, Whoa surprising news...She has small cataracts...

Good Grief, she is scheduled for her next check-up in 6 months to determine the rate of progression since this is the first time he saw it.  So, we are at a wait-and-see for now.  Who would have imagined at an early age and those beautiful blue eyes, that she would have eye surgery in her future AGAIN.

Sadie had Strabismus (both eyes turned slightly when she was sleepy) eye corrective surgery in June 2007 (I think it's crazy when your kid has been under so many times that you can't remember what happened when anymore).

First Bus ride

Sadie's first school bus ride. She was a little fussy because of the errr chhhh sound of the bus and I assume the size and newness of stepping on the bus. I had hoped they would strap her in a 5-point bus vest, but they tried a regular seat belt with a snap lock over the latch. She settled down and the bus took off. It's all good.