PRESENTING....Miss Faith Ann....

Saturday, was the much anticipated Hejaz Shrine Circus....
Faith was the only child who was presented at the afternoon show, which was kind of cool. She was treated like a VIP. Our escort, Mr. Rogers, saw to it that the children had cotton candy, souvenirs, front row seats and other wonderful surprises! Faith and I both got a special treat...riding on an elephant and she also got to ride a little pony! She was thrilled! I was, on the other hand, was a little afraid when we boarded the elephant! A big feat for a person with SEVERE acrophobia! When I got to the top of the loading platform, I got very dizzy, thankfully someone else was carrying Faith!
But we both made it on the elephant, alive, and once we were on it was quite exciting!
Faith was wheeled up by the whelchair team, and presented to the public as her story of how Shriner's had helped her was told...She was more interested in the people pushing her than the cheering crowd before her!
They gave her a spinner toy, sparkly bracelets, spending money and a VIP pass!

We took Faith's cousin, Parker and one of her girl scout friends.....None of the children had ever been to the circus before. So it was a first, exciting experience for them all!
There was a juggler, bears, acrobats (Faith's favorite), tightrope walker, clowns and an exiting pair of motorcyclists who rode inside of the SPHERE OF DOOM!
After three hours....it was time to end....
All of the kids had a blast! I slipped $6 into the pocket of one of our girls, so she could ride the ponies. She had so much fun, she couldn't stop smiling!

(I think, she thought that she had won the lottery!)

We snagged a few more photos with our host and then it was time to go....

Thank you, Shriner's, for all you do and for your compassion and kindness to our family, our Girl Scouts and for all the children who benefit from the circus at the hospital.

Progress is Progress....

Lately we have been seeing a LOT of changes in Faith, developmentally. Really for the past 7 months or so. I have no real explanation for it, except GOD working, which is enough for me! She has really been testing me and my commitment to how I will begin homeschooling her, this fall. Let me back up a little and say that I used to obsess over stupid things that I thought she would NEVER do......like.....learn colors or numbers or be able to identify weather. In the last six weeks she has begun to do ALL of these things!
One of her goals in speech is to be able to identify 4 or 5 colors, I believe. After a month of......RED and YELLOW, she can now reliably discern the difference about 80% of the time. Seriously, all we did was RED and YELLOW, every week! But it must be working, right! Also, I have had this video of her, I have been trying to post for two weeks now, with no success, that shows her saying "THREEEEEE". Of course, it ALL goes back to HORSES. We were on one of her favorite reads.....the 2009 Illustrated Horse calender (insert snicker here!) and on every page we would put her hand on each horse and count....one...two....three. All of a sudden she GOT it and started saying THREEEEEE. She, by no means, is doing this in any kind of order, no one's or two's but I'm not complaining! So, now she can put her OWN hand on each horse, one at a time and (if there ARE three horses) she often will say three! Amazing?
Next, I found these weather static cling stickers at the local Dollar Tree. They have clouds, sun, rain, rainbows etc. We hung them up on the back door and every day, we go check to see what it's doing outside. Tough things like rainbows and snow, she can't discern but she knows SUNNY and RAINY, now! If you hold up the two stickers and ask her "Is it sunny or rainy outside, Faith" she is pretty, darn good at picking the right one. She will even add her own version of the correct word as she points out the window! The other day, as we were leaving therapy she pointed up and said "nun-eeeee" (her word for sunny) SO FLIPPIN' CUTE.
So now I am really having to start pushing myself to push her a little more than I thought she was ready for. I have spent hours on the computer, at night, scouring the web for crafts, projects and ideas to re enforce these ideas that she is picking up. I NEVER thought we would be ready to do these things, this year (maybe not any year). It made me think, last night, about the girl who did Faith's evaluations, last fall. She told us that the biggest thing we had to fear, with Faith, was UNDERestimating her. AND SHE IS RIGHT....

More bites.....

A few months ago I posted some video of Faith eating....

She has been making slow, steady progress. Our feeding doctor wanted us to increase the variety of foods we try with her. So this week, I have to keep a food log, documenting what she had and how much she had. I discovered these toddler meals with pasta and vegetables and different meats. I did try some of the already pureed baby foods but she DID NOT like them. Too bland, I think. So we moved up and tried pureeing bigger kid meals and she seems to really enjoy them. Yesterday, we started with a kid's version of ABC's and 123's with veggies...a six ounce container. I split the cup and saved half for the next night.

This is about 3 oz of food.

She ate the entire amount....all three ounces...with very little coming back out, maybe a couple of baby spoons worth!

She really seemed to like eating the ones with pasta in them...

She IS her momma's daughter!
Then tonight she finished off the rest, just leaving a couple pieces of meat that didn't get mashed up!

When Faith was three, we spent 8 weeks at the Marcus Institute in Atlanta, for an intensive feeding program. She had very little success, despite every one's best efforts and HOURS and HOURS of work, everyday. But now that she IS eating, we are bringing out the old arsenal. We use a NUK brush, to give her additional input on her tongue. I collect the food in a ball on one side of the brush. I ask her to open her mouth and say "ah"...when she does I put the food at the back, middle part of her tongue then roll the NUK brush backwards off of her tongue. This technique was used to elicit a gag response, when she was smaller, to "teach" her how to swallow. Now we don't go as far back anymore, since she has figured out how to make a swallow happen. But we still do use the rolling NUK brush routine and it seems to be a good reminder to her that food is in her mouth and she needs to swallow. When I looked at these pictures, I couldn't believe that MY child had eaten all that food! I feel like it's all a big dream and I am going to wake up and she won't be eating, again. All you moms whose kids don't eat/have G tubes know that feeling of utter desperation in wanting you child to eat. For me this eating seems so foreign...I don't know how do react! I have had trouble with gauging how much is enough, when I should push her, how often I should offer her food. I feel like an alien in the weird, food world!

World Thinking Day....

Saturday was World Thinking Day for Girl Scouts. A day to celebrate all the different countries around the world. Our troop had Switzerland, kind of a hard one for little girls. Each troop had made a flag for that country and the decision was made to have Faith carry the flag and be pushed by one of the girls with another girl who walked along saying Hello in the native language.

na na na na na na na na......BATGIRL!
Faith had so much fun, two girls in the troop took it upon themselves to go and explore the other booths with Faith. One minute Faith was there right next to me and the next she was across the gym. Scared me to death! But I caught up with them and was deemed the official carrier, to collect all the loot and booty and tag along behind them. They made masks for Carnival in Brazil and Faith actually LOVED wearing hers. She left it on for like an hour!
GOOD TIMES.....

Small Steps....

Last week, Faith had a small milestone that was not photographed until today...

She climbed the steps at the pool...
She has been able to do the stepping motion, up, for a while but someone had to hold her under the arms....
But this time she was able to hold on to the rail and even actually step..... D.O.W.N!
Believe me, it was not easy, she struggled getting that leg to stay straight while she had to bend the other one. A few slips, a few cheats when she just fell down them but she did it!
She went up and down four times and was UBER proud of herself!
She loved the IDEA of holding on to the railing...

She even made it out of the pool! We were all cheering for her! She worked so hard to hold on and get those legs to work together.

Shoot....looks like we will have to install a second story on the house to practice, now! I knew that handicap accessible house was a bad idea!

Spring...Finally...I think....

Happy Spring, Everyone!

These photos were taken at the SC Botanical Gardens...

The same place I had my bridal portraits done.

We take Faith here every spring and photograph her in the daffodils.

Usually we do it the first week in March, on our anniversary. But Mother Nature is fickle and has been holding out on us, until today!

FINALLY!

That's what FRIENDS are for....

I know I have been posting a LOT about our adventures with girl scouts and horse riding and inspirational things. A LOT of sappy posts, I guess. But over the last few months, I feel like I have awakened from a coma. Like GOD has brought spring again, into my heart.

I have had my eyes opened to so many possibilities for Faith and I feel so inspired! With these activities and children I have seen the HUMAN side of Humanity.

so please indulge me....

More adventures in Girl Scouts....

Today, the girls worked on their Five Senses patch...Sounds....Everyone helped Faith play "Twinkle Twinkle".....

Then they played some songs on the keyboard...This was her favorite part...She loved being able to push the keys....

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Then two of her friends asked if they could get Faith out of her chair and walk her around the room....

Those girls, I am considering adopting them all!

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She was so excited and having her friends there, helping her was a big boost for her....

Some of the moms got in on it and started encouraging her to walk....

Everyone was cheering for her! She was trying so hard. I just can't tell you all about how much these girls have done for MY soul and for Faith. I love each and everyone of them so much! They are so good to her and NEVER leave her out. In this day and age, it is hard to imagine kids being so caring and open and accepting. Sometimes it feels like kids and adults are so self centered and judgemental. But these girls.....Oh These Girls.....

WONDERFUL!