New Teeth

I told Cicily to show me her teeth so I could get a picture of them. I'd say she obeyed quite nicely!

Here are some pictures of Cicily's new front teeth. (Compare these 2 pics with the ones from Cicily's first day of school to see the teeth difference.) Dr. Carter put crowns on her 4 top front teeth last Friday in surgery. They look so good. We were expecting more "chicklet-like" teeth, and these really look natural. Once again, we got a great doctor who did a great job with our girl! Sadly she still seems sensitive to cold foods, but we'll see how that ends up.

Baby Love

Cicily has been LOVING babies lately!! Fortunately for her she has two new baby cousins, Liliana and Monique. Here are two pictures of Cicily adoring Monique. They both came to visit over Christmas time and Cicily wanted to hold them all the time. None of the hold for 1 minute and I'm done either, she would sit and hold them for a long time just looking at them and smiling.

I think she must recognize a fellow pure soul when she's around them. We're glad she's getting some good practice being a big sister. Come June, Cicily will get all the baby girl snuggles she will ever want, and she's quite excited about it!

Surgery coming soon

Cicily will be having her next surgery on Friday January 29th. This surgery will be entirely for dental work. She'll be under general anesthesia in the OR and the dentist will be doing all the dental work she needs done all in one shot.
Dental work being done:
Crowns on all four of her top front teeth. Those four teeth are small and grew in without enamel and decalcified. This means they've been very sensitive to cold foods. Hopefully the crowns will protect the teeth from cavities, make them less sensitive, and make Cis' smile even cuter.
Seal her molars. This protects them from decay.
Do a good deap cleaning
Fill any potential cavities she may have.
So it should be a fairly easy, relatively painless surgery.

Cicily's blended diet recipe

I've been asked many times for a sample recipe of what we feed to Cicily through her g-tube. We've been doing a blended diet (blending all normal food) for Cicily since she was a year old. Cis had a feeding therapist when she was a baby that always told me to keep her eating habits as "normal as possible". Feeding her real food just seemed like an extension of that and it was something that I just felt would be really good for her, so we do it. I've never counted calories for Cicily, because I don't count calories for my older daughter either. Some days Cicily gets more calories, some days less. What I've done is taken the FDA guidelines for a child Cicily's age and created a healthy recipe to blend and feed her. I change and increase the ingredients as she grows. When she was in the hospital in July I finally had a dietician look at her recipe and she ran the numbers and said it looked great.
Here's the recipe, this feeds Cicily for one day. As always, feel free to leave your own suggestions or questions.
1 1/2 -2 C. grains (barley, oats, rice, wheat, millet, quinoa, etc.) I do raw with 2 C. water in the Vitamix and blend for 3 or so minutes. I used to used the equivalent of already cooked grains.
2-3 servings of veggies (whatever we have around on that day)
2-3 whole fruits
2 T flaxseeds
2-3 t. olive oil, coconut oil, or any other oil
1 C milk
1 cooked egg, 1 serving of cooked meat we ate that day, or 10 almonds
1 t. salt
Sometimes I add 1/2 C plain yogurt, spices, beans, or whatever else I feel like feeding her
I first blend the grains, meat and water together for a few minutes, in the VitaMix blender, then add the milk and everything else and blend for another few minutes. With each meal I also give her 2-3 oz milk or water (to rinse out the bottle I used to measure her feeding).

My sister- the aspiring respiratory ther./nurse/doctor

This is Maya and her patient Lucy. The other day Lucy was coughing and Maya calmly, but quickly ran over to grab the face mask we use to do CPT on Cicily. (CPT is when you take a mask , or cupped hand and just thump on a person's chest to clear their lungs. We frequently thump Cis' chest when she's coughing.) Maya proceeded to pick up Lucy, lay her down and begin CPT. Treatment was successful -Lucy stopped coughing.

I suppose Maya could be aspiring to be a respiratory therapist or, even better, a Mom to her own wonderful child like Cicily. We've already started wondering when we'd feel comfortable leaving Maya and Cicily alone at home. Let's see, Maya can already replace an HME, suction a trach, call 911, run a feeding pump, and perform CPT when necessary. We'll start working on trach changes. ;)

Preschool Girl

First day of school

What is that smile all about?? I could not get a real smile out of her that morning. Maybe she was just too excited about school.

Last week the preschool had a carnival. Cicily got her face painted!

She always wears all of her "daytime gear" to school: hearing aids, glasses, orthotics, and trach and g-tube of course.

Cicily started preschool last month. She goes to a district-run preschool about a mile away from our house. We were pretty sure we only wanted to send her if she could have her own nurse with her in class. However, after meeting all the faculty at this preschool we felt very comfortable sending Cicily without her own nurse. There is a great nurse at school that helps 3 of the children who have trachs. She goes from classroom to classroom to make sure they're safe and don't need suctioning. Cicily's teacher is fabulous!!! She signs to Cicily, sings with the class, is very easy-going and even suctions Cicily's trach! Cicily has physical, occupational, and speech therapy at the school. I love her PT, she's always giving us new suggestions and doing new things to help Cis learn to walk. Cis' OT is one that worked with her when she was one year old, she's been a favorite OT, so we're glad to have her back! And her ST has worked a lot with kids with a hearing loss and I've been impressed with her plans so far.

I went to school with Cis the very first day to make sure everyone was comfortable with the trach and to see it all in action. Everything seemed to go well, so she's been going on her own ever since. She cried when I dropped her off for the first week, but now she goes with no problem. She's always so excited to tell her Daddy about what she did at school when he gets home. We're very glad she likes it and is gaining a lot of new knowledge, social learning, and therapy skills.

Hippotherapy

What is that you may ask -as we did - some kind of therapy employing hippogriffs? It's actually therapy on a horse. Cicily does her hippotherapy with an experienced, caring physical therapist named Rachel and a patient pony named Ruby. I could explain hippotherapy, but this is a short, great explanation already written, (plus I'm really not a hippotherapy expert yet). http://www.americanequestrian.com/hippotherapy.htm It basically just makes sense in an intrinsic sort of way - you sit on a horse that moves and your brain figures out better how to move. It is more expensive than other therapies, because we have to pay the stable costs. We sort of count it as Cicily's "extra-curricular" activity for now, since we can't exactly pay for dance or singing lessons for her, so she gets horse time (which she probably loves better anyway).

Cicily LOVES seeing all the horses and petting Ruby! Enjoy some pictures of Cicily enjoying her Ruby time.

Signing "walk" to let Ruby know to get the fun started.

After each lap around the arena, Cicily gets to climb off Ruby and tickle her nose. It's definitely Cis' favorite part of the whole deal.

Telling Ruby thank you.

Mommy's favorite part of hippotherapy.