Gracie's Journey

Long Time No Post...

2011-02-19T10:36:00.000-08:00

It has been over a year since I posted anything. I hate that I have not kept this up. I hope this blog helps many people get to know and appreciate the journey of Gracie Sloan. She improves daily and loves life! In these photos and video you will see her walking ON HER OWN in our backyard. She has come a long way since her surgery!

Snow Day 2010!

2010-01-29T16:22:00.000-08:00

Watch out winter olympics! Gracie and Mommy are cold and crazy sledders. The 3 of us joined all of the other crazies in Ellington Park this afternoon. We hope to go back with friends tomorrow.

Puppet Show

2010-01-18T08:19:00.000-08:00

Gracie decided to put on a puppet show for us this weekend. Where does she get her talent and drama?

Yoga Princess

2009-12-29T20:41:00.000-08:00

Gracie completing "Sun Salutations" with her yoga instructor at home. This stretching really helps her muscles. Her instructor has seen major improvement over the last few months. Way to go! Namaste!

A Natural

2009-12-29T20:39:00.000-08:00

I wonder how old I was when I got my first pedicure...NOT 5!

Angelic!

2009-12-29T20:25:00.000-08:00

My angel sang this year! She and all of her pre-K buddies put on a great Christmas program. In the video you'll see them preparing to sing Little Gray Donkey. So precious!

Santa Listens

2009-12-29T20:24:00.000-08:00

Santa listened carefully because Gracie got all she wanted for Christmas. Thanks Santa!

Friends in the Fall

2009-11-15T06:31:00.000-08:00

Gracie is blessed in so many ways. She is certainly blessed with caring friends. These photos show her with her dear friend, Mary Virginia. Mary Virginia is such a sweet, nurturing girl. They are in class together. They are at a fall festival in our neighborhood. I'm so thankful that Gracie is surrounded by good friends.

Shopping With Daddy

2009-09-21T19:43:00.000-07:00

Doug surprised Gracie by picking her up from school and taking her straight to Phillip's Toy Store. This treat was a reward for Gracie's huge day of walking at school that day. Doug said Gracie went straight to the little shopping cart seen in the picture above. He said they shopped around for a while, picking up little trinkets like an inexpensive ball and a squeezy toy. When they went to check out he felt good about Gracie not picking out anything real expensive. He handed the trinkets to the cashier thinking that was all she wanted. She then informed him that she wanted the shopping cart, too. Of course, he bought that for her, too. It is really built well; it's a Doug and Melissa brand. It doesn't tip easily. Gracie has enjoyed walking behind it very much. We keep setting up a store at home so she can shop and check out. Much fun!

Our Little Vol

2009-09-21T19:42:00.000-07:00

We all enjoyed the day at Papa Rabbit's Annual Fish Fry. Gracie entertained us all with her humor and walking. We enjoyed spending the day and most of the night with friends and family. We ate, played outdoor games (bocce ball, horseshoes, etc.), watched the UT game, and ended with a big fireworks show. Too bad the bonfire wood was too wet. We even tried hickory smoked elk. It was great!

Gracie Thrills Us All!

2009-09-16T14:54:00.000-07:00

This morning Gracie decided to try walking without her crutches. It was completely unexpected. She goes to physical therapy in the morning on most weekdays. Today she decided that she was going to walk out of therapy without her crutches. So, she did! She walked out of the physical therapy office and down the hall. Then her Grandma and Grandpa took her to school where she walked into the school, down the hall and to my classroom…without assistance. Unfortunately Daddy was unable to be there to see her walking down the hall but my class and teachers from the other classes were able to see her. She fell a couple of times but she picked herself up and went back to walking on her own.
This was a huge leap forward and thrilling for our family so we wanted to share this with all of you.
Thanks for all your support.

Gracie's First UT Game

2009-09-08T04:17:00.000-07:00

It's official! Gracie is now a true Vol! We took her to Knoxville this past weekend for her first game. She had a great time, and the Vols had a great victory against Western KY. Kudos to the University of TN for making it so easy to get tickets. They save some seats for special guests like Gracie.

See Mommy?!

2009-08-31T19:05:00.000-07:00

She's beautiful, right? Except the uneven bangs! Gracie decide to give herself a haircut the other day! She told us she needed some privacy in her room... She came out with uneven hair. She has received many compliments on her hair at school since then. She thinks people are commenting on her bangs, so she smiles when people compliment her, and she says, "See Mommy, my hair looks pretty." Ugh! The scissors are now in our possession!

New Goals

2009-08-28T15:10:00.000-07:00

What happens when all of your hopes and dreams come true? You set new goals. Whew...here we go. Check out the poster Doug, Gracie and I created for Gracie's goals. We had a lot of fun making it. I never knew so many stickers would fit on a poster!

If you look closely you'll see that Gracie has already accomplished some things on her chart!

Back to School

2009-08-23T10:14:00.000-07:00

On Friday, Gracie visited her new classroom at Oak Hill. She officially met her new teachers, Mrs. Holland and Mrs. Ramer. A couple of her friends were there to visit, too. She amazed everyone with her new ability to get around school with her crutches instead of her walker. The layout in Mrs. Holland's room is conducive to Gracie getting around. We all noticed big changes in her mobility and confidence since she was in school last year.

Gracie starts school tomorrow, the 24th. She will go half days this week and begin full days the following week. We are so proud of our pre-K girl!

What now?

2009-07-18T06:02:00.000-07:00

As you read the entry today, enjoy the pics Gracie took. Wow!

Many of you have asked what it means for Gracie to be able to walk. Let me try to explain. Gracie has been able to take steps independently during therapy for a few months. It's just now that she wants to practice outside of therapy. Because of her recent interest and drive, we set up the celebration at Pet Smart last Sunday. She did such a great job! Gracie now must practice and get stronger. She's not ready to walk on her own all of the time. Her strength will allow her to walk about 50 - 70 steps before she tires out.

So our plan is to have her continue to use her crutches (pink, of course) and braces on her feet to provide support. Ideally, Gracie will not use the walker when she returns to school except for long distances and probably the playground. We would love to pass on the walker to a child who really needs it. We're encouraging Gracie to walk from point to point in a room to prepare her for this in her classroom. However, she will probably be a little resistant to this at first. Walking without obstacles is certainly different from walking in a classroom full of active children.

At therapy, Gracie is doing all of her work without the crutches. We alternate between low and high braces. The higher braces give her more support and feedback. The lower braces make her work harder and therefore build her strength. Her walking is slow but beautiful! I can remember seeing another patient walking at therapy last year and wondering if Gracie would ever be able to do that. She is actually taking steps on her own! The other day I made her say aloud, "I can walk." We both smiled with pride.

We will return to St. Louis to see Dr. Park, the neurosurgeon, one more time. Our appointment is scheduled for September 28th. He told me last year that he believed Gracie would walk into his office for her next visit. He was so right!

Gracie Walks in Pet Smart!!

2009-07-12T17:37:00.000-07:00

Look at Gracie walking in these photos! She is walking on her own in Pet Smart. We are only walking behind her in case she falls. She is doing it by herself! She was so proud. She had people cheering for her and crying at the same time. The staff in Pet Smart loved the show! She has worked very hard for this special day. Many people were there to watch, but we were mostly pleased that her therapist was there. Laura has worked almost as hard as Gracie! We look forward to the things Laura can help her do in the future. I hope to post some video of this special day soon.

In the last photo you'll see Gracie standing in front of her goals poster. She was able to place the last sticker, ON TOP! Miss Laura is going to help us think of some steps on her next poster.

Getting Ready for Pet Smart

2009-07-12T17:23:00.000-07:00

Gracie made up her mind to complete the goal on the top of a goals chart she made last summer. The goals were steps Gracie should make to get her closer to walking. The ultimate goal (she chose) was to walk unassisted in Pet Smart. She decided she needed makeup for her big day. It was hard to watch, but I wanted the day to be hers, so enjoy the bright lipstick! She's so funny.

New Braces = New Gracie

2009-07-12T17:06:00.000-07:00

The therapist ordered new, higher braces for Gracie hoping they would improve her walk. The piece in the back of the brace keeps her foot positioned so that she cannot drag her toes when she steps. The braces have truly made a difference. They are not comfortable on her, so I know it will be a fight once the newness wears off. But for now, Gracie now wants to walk on her own. This is new for her. Watch the video below to see Gracie walking, all by herself, in her new braces.

Guess Who Learned to Read?!

2009-07-04T09:46:00.000-07:00

Last weekend Gracie learned to read! She asked us why we spelled words somtimes in our conversations. We explained to her that there were times when we didn't want her to know what we were saying. She viewed that as a challenge and asked me to try it at that time. I tried several sentences aloud spelling one word of the sentence. She was able to figure out all of the ones I tried: red, grass, green and rug. Doug and I laughed and said we were going to have to start talking in pig latin. So, the next morning I got out a Bob book (Great for beginning readers!) and asked her to try to read the 6 pages. She did it! Honestly, it wasn't even hard for her. The only 2 words she needed help with were "the" and "on". We are so proud of her! We called her teachers to tell them the good news! Check out the 2 videos!

Skating & Standing

2009-06-21T18:23:00.000-07:00

In this video, Gracie is wearing roller skates. It's her first time. Can you believe it, Aunt Lori?! Gracie really enjoyed being on wheels. Her therapist will let her try any equipment, after she finishes her hard work. In the other photo and video you'll see Gracie stretching her legs as she stands on one leg. Her "tickle machine" was hooked up to her legs to help stimulate and contract the muscles. This was hard for Gracie but a great exercise for her legs and her balance! She still sleeps with this same device (Empi) at night (most nights) to further progress her leg muscles.

Working Hard

2009-06-14T17:32:00.000-07:00

In the video you'll hear Gracie announce something that she's working on. We have prepared her that 5-year olds don't suck their thumbs. We're trying a "thumb-sucking substitute" which she loves to say. I read in a parenting book that you should give the child something else to do with his/her hands at bedtime. She now has a colorful squeeze ball to sleep with.

Gracie is willing to help all the time! In the photos below you'll see her helping Daddy stain her ramp. She loved that she had to put on "work clothes" just like Daddy does.

Little Diver!

2009-06-11T05:37:00.000-07:00

At swim therapy this week Gracie is learning to overcome her fear of going under the water by going after a toy on the walking platform. She was so proud of herself! Laura and I were thrilled, too! She still thinks she needs to hold her nose so it took a lot for her to do it with her hands free. I sure love my little diver!

Supergirl!

2009-06-04T09:38:00.000-07:00

In this video you'll see Gracie using her trunk control and her head/neck muscles to fly and swing like a superhero. Thursdays are swing days at therapy. We all know how much Gracie loves to swing. You'll also see her on a pogo swing. You can tell by her smile that she really likes this swing.

After therapy she went to Vacation Bible School. She's attending the program at Woodmont Baptist, where we've been going to church. Her class is taught by the much loved, much missed Miss Christy!! It's just this week from 9 - 12:30. It has been great for Gracie to reunite with Christy as well as some of her classmates from school last year.

Gracie is turning 5!

2009-05-21T18:46:00.000-07:00

We have one little excited munchkin in our house tonight! Gracie Elizabeth turns five tomorrow. She has been announcing the number of days until her birthday to everyone she encounters these last 6 or 7 days. I love that she thinks everyone is interested in her life, even strangers. She has big birthday plans. She will have a blast at school tomorrow with her fabulous teachers and friends. My students have even asked her to come to our classroom tomorrow because some of them have gifts to give her! Friday night, we're having a Wild-n-Wacky BYOS Party. Gracie decided she wants everyone to dress crazy and bring your own steak, her favorite food. It should certainly be wacky. We didn't send out invitations this year, so please come if you'd like. We're getting wacky at Dad's house around 5:00. Call us if you need more information. Then, Gracie is sharing a pool party will her friend, Will. They are in class together at Oak Hill. The kids in their class are coming to swim with them at The Collins' new home. In case that's not enough, Gracie is leaving the next day on a trip to Destin with Grandma and Grandpa for 5 days!

For her birthday, we put a white iron bed with a trundle in her bedroom. We also bought her an Air Pogo swing. It is fabulous!!!!

Thanks for loving our girl for 5 years!

Mother's Day at School

2009-05-10T18:00:00.000-07:00

Gracie's class had a Mother's Day brunch and program on Friday. It was precious! In the video you'll see her singing about keeping me in a little box. I love her little embarrassed smile!

Happy Mother's Day!

2009-05-10T17:08:00.000-07:00

Gracie and I hosted a tea party for our mothers on Saturday. They couldn't all come but we enjoyed our time with the ones who came. In the photo from back left:
Louise (Gracie's Godmother), Karre, Phyllis (Grandma), Hilda (Nan), Gayle (Nana) and Gracie!

New Playground Equipment!

2009-05-04T18:49:00.000-07:00

After finding out about a grant called "All Together Kids" funded by the United Cerebral Palsy, I applied and received money to purchase playground equipment. I was awarded $1,000 to purchase new equipment for school. The purpose of the grant is to allow kids (particularly kids with CP) to play more comfortably in a school or camp-type setting. Gracie and many more kids her age at school were thrilled to have equipment they could use more independently. Oak Hill has a nice playground, but the majority of the equipment is better suited for the older children.

If you know a child in Davidson County schools with a severe disability who would like more information on the grant, please email me at the address on the front page of this blog site. I'd be happy to share my experience.

Tooth Fairy

2009-05-04T18:31:00.000-07:00

On May 1st, Gracie pulled her first tooth. She was at school with her friends. When I was told by one of the teachers, I ran with my camera to see her. She was so excited! She was told all day about the Tooth Fairy and what to expect. So... when we got home she pulled another tooth! It actually was a loose tooth, but it really took some wiggling for her to get it out. After that, I made her promise me she'd keep her hands out of her mouth.

BTW- Gracie's tooth fairy brought her two $2 bills. She calls the bills "fairy money."

A True Princess!

2009-04-20T19:18:00.000-07:00

Gracie attended Grace's birthday party on Saturday. There were princesses and pirates running around everywhere. She had great fun!

Naturally, she found her way to the swing. Swinging in this type of swing is something we are pushing Gracie to do. She still prefers the baby swing. She can swing in the type seen above. We are just working with her to pump her legs so she can keep up her momentum.

I don't know why the video below is sideways. I rotated it in my editting program, and it showed that it was corrected. Oh well. Just tilt your head I guess.

New Favorite Swing

2009-04-15T20:15:00.000-07:00

Gracie went to Mary Virginia's birthday party last weekend. She had a great time with her classmates on a beautiful day outdoors. She absolutely loved the Air Pogo swing Mary Virginia had in her backyard! You can see the joy in her face in this video and in the photo. She had no trouble staying on the swing; the hard part was getting her off! She loved it! Gracie has always enjoyed swinging. It's something she chooses to do over any other activity.

Standing Up

2009-04-15T19:51:00.000-07:00

In this video you'll see Heidi helping Gracie transition from kneeling to standing. This is hard work for Gracie but she can do it!

Easter Day

2009-04-14T04:08:00.000-07:00

Hoppy Easter!

The Zoo

2009-04-12T05:32:00.000-07:00

Hello Lily! I posted another page today just for you. I'm sorry I've gotten behind. I hope you enjoy this video and photo of our last trip to the zoo. Gracie loves the carousel.

Some people wish they had bodies like the stars. Well I wish I had arms like my daughter. Check out her muscles! We can't wait until her legs build up too.

Climbing Nashville!

2009-03-30T03:51:00.001-07:00

Take a look at these pictures from Gracie's latest physical adventure! We took her to Climb Nashville. We were invited by Charlie, one of my students. His family decided to ask for donations to a worthy cause in lieu of birthday presents this year. So, he had his guest bring donations to the March of Dimes in honor of Gracie who was born 12 weeks early. Is that fabulous or what?

In these pictures, you will notice a couple of things. Gracie working hard, coming very close to reaching the top, and Doug following her up...in his dress clothes! He couldn't resist when Gracie said, "Help me, Daddy!" She proved to all of us, again, how determined she is. We were so proud of her!

Gracie Walks!

2009-03-23T16:57:00.000-07:00

View the video below to watch Gracie achieve one of her goals. Gracie is walking from her bathroom to her bedroom using her own strong legs! I am following her simply to spot her. She decided to do this one night over Spring Break. She does this in therapy often, but she does not walk unassisted much at home. We were very proud of her! This happened after a week of walking solely with her crutches. She did it! We put away the walker for Spring Break and required her to use her crutches. Honestly, she didn't show much resistance. Hopefully she knows she is ready for the next step toward independent walking.

Spring Break

2009-03-13T08:00:00.000-07:00

Our Spring Break begins today. We have prepared Gracie for a big step... She is putting her walker away over the break. She will be solely using her crutches, pink of course! She has used her crutches for a long time. However, we've allowed her to use the walker, too. She has gained confidence and no longer requires someone to be close beside her when she walks with them. However, she is still fearful and a bit slow. For this reason, she will go back to using her walker primarily at school after Spring Break. We will use the crutches at home.
Because she wanted to (this is huge for her), she used her crutches to walk to her classroom this morning. She took about 300 steps on them. It took us 20 minutes because her classroom is a good distance from the front door. She was commended the whole way! Everyone stopped to congratulate her which caused her to smile the whole way. It was fun to watch her be that proud of herself!
Wish us luck!

Morgan, A Friend

2009-02-16T11:40:00.000-08:00

Calling all Gracie fans!
Check out this website: http://www.morgansangelsofhope.com/Home

This is a little girl who has a lot in common with Gracie. We will be praying for her and following her progress.

Snow Skiing in Nashville!

2009-02-16T11:32:00.000-08:00

Gracie and Daddy love to play the Wii together. Here's a video clip of him coaching Gracie on her snow jumps! By the time they had finished playing, Gracie had worked up a sweat and "exercised" for 30 minutes. We are all big fans of the Wii.

January into February

2009-02-02T18:39:00.000-08:00

Gracie has had a wonderful first month of 2009! She has been very excited about practicing her walking. We are all thrilled! We have often said that once she has the desire to walk, the rate of her progress will increase. I believe this. Gracie has taken 14 consecutive steps unassisted!

I look forward to Spring Break. I'll be the one taking Gracie to therapy. I will get more video of her for the blog. There is a big improvement in what she can do lately that will be more evident in a video clip. Gracie is also not being as adamant about having someone stand close to her when she uses her crutches. Whew!

A friend at school today reminded me that over a year ago I said it was hard to imagine Gracie taking a step on her own. While I realize she has a long way to go, I am very proud of Gracie and the progress she is currently making. I'm so glad my friend made me stop and reflect for a minute.

Magnetic art above by Gracie

A New Year

2009-01-11T19:16:00.000-08:00

Up until this point, Gracie has always found comfort in the fact that we could carry her anywhere she wanted/needed to go. The other night she asked me a question that shocked me and excited me. She asked, "When will I walk by myself?" I made a big deal of it and told Doug. We were excited that she was thinking about it and hopeful that her mind would become focused on this goal. Since this conversation, she has been eager to practice walking without assistance. Something she enjoys doing right now is walking between two people, back-n-forth. Her steps are more slow and accurate. In the past, it was more like a lunge or forward stumble.

School is going well. Gracie is happy there and enjoys all of the people she encounters during the day. She still goes to therapy 4 days a week before school. She enjoys her time with Laura, her PT. We do get resistance from her some mornings though because Laura wants her to wear her theratog under her clothes. Gracie complains about it itching her and being tight. I believe her. It would drive me crazy. However, it helps her legs remain in a forward position rather than turned in. We will both be happy when she gets permission to stop wearing it.

Gracie still uses the electric stimulation machine at night and some during therapy. This promotes muscle activity. She doesn't mind it at all anymore.

This is going to be a great year for Gracie! This new interest in walking is so exciting!

Christmas Program

2008-12-22T10:10:00.000-08:00

This is a video clip of Gracie's Christmas program at her school. It's a little unsteady but you can still see her with her classmates. She was actually shy on stage. That surprised us!

"Walking Beauty"

2008-12-22T10:03:00.000-08:00

I just love the smiles in this recent video! Gracie is walking with her crutches in the hallway at home. We are all viewing the Christmas break as a time to devote to serious progress on Gracie's crutches. Fear of falling has been the hurdle with this skill. However, her confidence is slowly growing. I haven't seen it but her therapist has even persuaded her to walk with one crutch some during therapy!

Doing the Dishes

2008-12-22T09:45:00.000-08:00

Gracie loves to help in the kitchen. So, to make this more possible, Doug ordered her The Learning Tower. It's an adaptive stool. She feels very safe because she is surrounded by wood. Take a look at this video.

Christmas Cookie Party

2008-12-09T04:41:00.000-08:00

Gracie's class had a Christmas party where all of the kids decorated and ate sugar cookies. She enjoyed the party and certainly the cookies!

Happy Thanksgiving!

2008-11-25T12:13:00.000-08:00

We're heading to Ft. Myers, FL in the morning to spend Thanksgiving with Papa and Grandma Neece. We're looking forward to some sand and sunshine.

Happy Thanksgiving to you all!

Love, The Sloans

Dance Party

2008-11-05T19:33:00.000-08:00

Gracie attended Ruby's 4th birthday party last weekend. It was a Shirley Temple party full of favorite old songs, authentic Shirley Temple drinks, and dancing shoes. It was fabulous to see Gracie enjoy herself so much on the dance floor!

Happy Halloween!

2008-11-05T19:23:00.000-08:00

Only Gracie would choose to be a British nanny for Halloween! She was adorable though. She got to wear her costume to school and then out that night for trick-or-treating. We went to Grandma's house. Cal and his parents joined us for a stroll around their neighborhood. The weather was beautiful and the night was filled with all of the excitement a kid could take!

Visiting the Campsite

2008-10-25T16:25:00.000-07:00

Doug and I took Gracie out to visit my family when they went camping last weekend. They were at Seven Points, on Old Hickory Lake. Gracie loves being at a campsite. We set up her little Mickey Mouse tent and brought all of her dolls, baby sleeping bags, and such. We stayed for dinner and roasted marshmallows. Then we went home. We came back the next morning to have breakfast and hang out with everyone. Gracie used her tall sticks to walk from the campsite top the playground nearby. It was hard for her but she was determined to do it and proud that she did. Donnie took us out for a quick boat ride on the pontoon boat. Gracie loved it!

Music & Molasses

2008-10-18T19:56:00.001-07:00

We took Gracie to the Music & Molasses festival at Ellington today. We met her friends Gracie Simpson and Cal Slocum, two of her favorite little people. She had a big time from pretending to be a farmer to eating the great food! Gracie's favorite part was the area for the little kids where she pretended to paint a barn, weighed produce, hung laundry on a clothesline, and plucked the corn-on-the-cob. She wanted no part in feeding the goats so she just watched me feed them. We all laughed hard when Gracie attempted to bob for the apples hanging from the tree! Before we left, we all enjoyed watching the border collies herd the sheep. They were amazing!

New Camera!

2008-10-14T19:43:00.001-07:00

Hooray! We got a new camera! I haven't been as diligent about posting new entries since our camera broke. We got another one so I'm ready to post again.
Doug and I chaperoned on a school field trip today to Gentry's Farm. For those of you who don't know, it's a pumpkin patch with animals, tractor rides, oldtime store, etc. Gracie had a great time. She brought home her very own pumpkin, picked right from the vine. Enjoy the photos.

First Field Trip

2008-10-05T08:57:00.000-07:00

Gracie went with her class to the Brentwood Fire Station last week. She was apprehensive about going at first because of the gas masks they wear. However, once she got there and realized that they were not fully dressed she was fine and dandy. In fact, she was one of the most eager students there, so I heard. She now can tell us all about fire safety and firefighters.
Her next field trip will be on October 14th. I will accompany her class to Gentry's Farm, a nearby pumpkin patch.
She has now had a full week of fabulous drop-offs. She now kisses me (or a grandmother) at the door, wishes us well, and says goodbye. She promises to "be sad but not to cry." We're very proud of her.
Lisa, Gracie's Metro PT brought a swing to school last week that is easier for Gracie to use. She is having fun in this new swing.

Sadly, I have no pictures to post. Our camera is broken. Sorry.

Using the New Crutches

2008-09-21T10:55:00.000-07:00

Our new focus has been getting Gracie more comfortable with her crutches (away from school). She had a bad fall using them last Thursday. She fell straight forward and landed on her chin. She, very bravely, got back up on her crutches later that day. Her chin is okay but it's a wide array of colors from the bruising.

In the pictures shown, Gracie is walking outside to go to her swingset. She has just now started using her crutches without someone either holding onto her or directly behind her. It is exciting to see her get more brave with them.

Visiting Dr. Park

2008-09-18T04:01:00.000-07:00

We took Gracie back to St. Louis this past weekend. We took her to see Dr. Park, the neurosurgeon who performed her operation last May. Gracie was happy to see him and excited to show off her new flexibility and skills. She did everything he asked her to do (which is sometimes a major accomplishment with her!). He was pleased with her new level of spasticity in her legs, the healing of her incision area, and her increased mobility. Gracie walked for him in her walker, on her crutches, and independently. She walked 3 or 4 steps by Doug to me. He agreed that she needed to use the walker at school but also noted that it is much too easy for her. He is anxious (as are we) to see her move to solely using her crutches and ultimately walk by herself. We go back to see him in one year. He said he fully expected to see her walk into his office all by herself next year! We all loved hearing that news.

As you'll see in the photo, we returned to the zoo. Sadly, the carousel was closed, but we got to see many exciting animals. Gracie really liked the elephant fountain seen in this photo.

Thanks for all of your support and love everyone!

The Sloans

We're Leaving Town

2008-09-12T03:58:00.000-07:00

School is still going very well. I believe Gracie has talked to every adult in the building, sometimes even at length about whatever might be on her mind like the fire drill, a toy she enjoyed or most recently, that she's not scared anymore of the book We're Going on a Bear Hunt.
We leave for St. Louis Saturday morning. We are going back to see Dr. Park, the neurosurgeon who performed Gracie's SDR surgery in May. This is a standard 4-month follow-up visit. We don't expect to get a lot of information but we are anxious to see how he feels about what she can now do that she couldn't do pre-surgery. We are staying in a nice hotel for a treat to our little Eloise who loves hotels. We are going back to the zoo, too. Who knows what else. We'll be back Monday night.

2008-09-08T18:57:00.000-07:00

GO TITANS!!

New Crutches

2008-09-06T09:03:00.000-07:00

Take a look at Gracie using her new crutches!!!

Short Crutches

2008-08-31T14:57:00.000-07:00

Gracie has outgrown the pink crutches. These were just loaners from Vanderbilt, so we have now ordered a taller pair of her own. Bad news: They were out of pink! We ordered purple; they should arrive any day.

While Gracie continues to perform well on her crutches, she is still fearful of falling and insists that someone be right by her side or behind her. For that reason, she is using her walker at school. She just completed her first week of school and has amazed us all! He prepared ourselves for a difficult, sad transition, but it just didn't happen. She loves her new school. She is such a star there. Everyone stops to talk to her in the hallway. I'm sure her teachers hope that will calm down soon! I believe it has helped her feel more comfortable there. Starting Tuesday, she'll stay at school all day and ride home with me. That will make for a long week but kids adjust so quickly.

Oak Hill School

2008-08-26T18:16:00.000-07:00

Gracie has had an amazing first 2 days of pre-K! She has not had one bit of trouble with the transition to her new school. Drop-off has not been an issue, and she is just as happy when she gets picked up. This week, school only goes to 11:00 but she is still having a full week. She goes to therapy at 7 AM, goes straight to school, then she hangs out with one of her wonderful grandparents until Doug gets off work. We truly couldn't be happier with how things are going. She has even come home talking about liking some of her classmates. This thrills us since Gracie usually prefers to play alone or with adults.

"I love my new school, and I love my new teachers," she said after her first day.

Preschool Visit

2008-08-22T16:18:00.000-07:00

Gracie toured her new classroom today! She met her teachers, Mrs. Lee and Mrs. Neely. She also met 3 or 4 of her classmates. She was thrilled with the toys in the room, especially the kitchen area. I see her spending a lot of time in that area this year. She didn't want to leave, so that's a good sign. She will return next week for half days (until 11:00). After Labor Day, she will be there all day, every day. Before going to her classroom, she stopped by my room to meet my students. They were very sweet to her. She entertained them by drawing on the board. See below.

School Starts Soon!

2008-08-18T18:37:00.000-07:00

I went back to work today, and Gracie starts at Oak Hill next Monday. It's hard to see summer go but I'm anxious to have Gracie at school with me. She will be in loving, capable hands with Mrs. Lee and Mrs. Pratt in pre-K. Gracie will be able to get around easily in her classroom by cruising from furniture to other stable pieces. However, for the longer journeys to the gym and playground, she'll need to use her walker. She could use her crutches but for the sake of time, the walker will work best. This will also allow her teachers more freedom to leave her side when she's walking. She still wants someone close by when she uses her crutches.
For those of you who don't know, Gracie loves the show, Nanny 911. In the picture above, she is dressed up as one of the nannies.

Gone Fishing

2008-08-14T16:39:00.000-07:00

In order to have Gracie practice standing and squatting, Heidi had her use a toy fishing pole and velcro fish. As always, Gracie negotiated how many times she would need to squat to pick out the fish she wanted to try to catch. By the end, she learned to pick out 2 fish at a time. She's such a smart girl! Later, Heidi had her walk on the pulley machine. She didn't like walking forward but she loved the way the belt pulled her backwards.

In a Box

2008-08-14T16:27:00.000-07:00

While we were watching the olympics the other night, Gracie disappeared for a few minutes. She called us to come see her, and this is how we found her... This is a great example of her improved flexibility with her legs. She could never have lifted her legs and gotten into a chest before the surgery. Exciting!

On the Beam

2008-08-14T16:22:00.000-07:00

Just like the competitors in the olympics, Gracie practices her walking on the beam. Her therapist has her lean against the wall and walk sideways. Gracie is enjoying watching the olympics, especially the gymnastics. She now even shows us her own floor routines.

X-rays

2008-08-09T18:43:00.000-07:00

Doug and I took Gracie to Vanderbilt last week to have hip and leg x-rays. She needed the x-rays for our follow-up visit with Dr. Park. We will go back to see him in St. Louis on September 15th. It will be great to hear what he has to say about Gracie's progress. Gracie was not nervous about the appointment since she's had x-rays taken before.
We are preparing for school. I start back on August 18th and Gracie starts on the 25th also at Oak Hill. She will be in pre-K just down the hall from me.
We are eager to see Gracie's therapist, Laura, on Monday. She has been gone for 2 weeks. We'll be able tell her that Gracie has earned 3 stickers on her goals chart.

Other Therapist Friends

2008-08-05T15:14:00.000-07:00

Since Laura is still away in Africa, Gracie saw Mandy today for water therapy. She knows Mandy and has always enjoyed cutting up with her, but it was still great to see Gracie perform well for her. Gracie entertained Mandy and a couple of other therapists with her standup jokes in the water. She also walked up and down the platform in the water several times. When Mandy had Gracie hold a toy behind her back she was able to walk several steps on the platform without assistance. This is always the case with Gracie. If you get her to lean forward even in the slightest way, her balance improves. However, it scares her to lean forward so you have to do it without her realizing it, like having her hold a toy behind her back. We see this with her walking also when she pretends to have the crutches. Her balance is improved and she takes more steps. As soon as she gets scared, she pops her arms up and loses her balance.

The Poster is Complete!

2008-08-01T10:31:00.000-07:00

As you may have read in an earlier post, Gracie and I had a blast at Michael's picking out the supplies to decorate her Goals poster. Well... we finished the poster. I drew the hill, wrote the goals that Gracie helped establish, and put motivational stickers along the bottom edge. Gracie did the rest. Nana was with us, too. She assisted with opening bottles and sticker packages as well as cutting out letter stamps for Gracie to use. If you enlarge the photo, you may be able to see her goals on the hill. I will be adding smiley face stickers to the poster when Gracie achieves these goals. If you look closely, you'll see a sticker!

Take Two on the Tape

2008-08-01T10:18:00.000-07:00

On Wednesday, Heidi put some kinesio tape on the front of Gracie's legs. The tape is supposed to give her feedback from her muscles and help her toes lift easier as she takes steps. Gracie did not like the tape. I had to take it off Wednesday night. It's intended to stay on a few days. The therapist tried the kinesio tape again this morning on the front of her left leg. We'll see how long she can handle it.

Monkey on the Monkey Bars

2008-07-29T16:36:00.000-07:00

Gracie enjoyed climbing up the ladder today to use the monkey bars. Her therapist also had her kick a ball to me, both sitting and standing. The ability to pull her toes up toward the ceiling is a difficult thing for Gracie to do. Kicking and walking require similar movements from her feet. Kicking a ball is something we can practice at home.

Gracie was a real trooper today. After we left therapy, we headed for the dentist. Dr. Adams said her teeth looked beautiful! We later treated ourselves to lunch with "Crazy Aunt Peggy" downtown.

Reaching Goals

2008-07-28T20:40:00.000-07:00

The other day at therapy, Laura drew a hill on a dry-erase board. She explained to Gracie that she was climbing this hill as she worked toward her goal of walking. She asked Gracie what ultimate goal Gracie would like to achieve. Gracie told her she wanted to walk around in Pet Smart all by herself and look at all of the animals. This is something Gracie has enjoyed doing in the past, using her walker. So Laura wrote that goal at the top of the hill. Laura also got other input from Gracie about things she can do now and other goals she'd like to reach along the way to her ultimate goal. By the time Laura was finished with the drawing, Gracie seemed motivated and recharged. Because of this I decided to take Gracie to Michael's today to get materials to help her make a visualization board to keep at home. Gracie loved the idea and thoroughly enjoyed choosing all of the fun supplies we'll need to decorate the poster. This is a project we'll work on this week. We'd like to have it finished to show Laura when she returns from her 2-week vacation to Africa with her family. While Laura is away Gracie will be seeing Heidi and 2 other PTs that work at Vanderbilt. We have been so blessed with the quality of therapists there.

The cute photo of Gracie is one Jenna took earlier this summer at the zoo.

Walking in Water

2008-07-25T09:00:00.001-07:00

Here's a video from this week's water therapy. Gracie does a great job in the water with Laura!

Note: Laura is wearing the funky glasses temporarily per her doctor's orders. Gracie likes to tease her about them.

Miss Hawaii

2008-07-25T08:43:00.000-07:00

Gracie has been working on walking with only one hand supported. In the video you'll see her walking with one hand on the way and the other hand free. We have also practiced where she holds only one of my hands. This will be helpful when she starts school. I was most thrilled by her work on standing yesterday. I don't have any footage of it but Laura sat behind Gracie as Gracie stood up and threw a ball back and forth to me. She caught it and threw it back to me several times without falling!

After Work

2008-07-21T21:12:00.000-07:00

Doug met us after work today for a quick swim at the Y. He was eager to see Gracie use her water wings again. It is great to see her so excited and so confident about something she can do.

Steps!

2008-07-21T20:54:00.000-07:00

Laura spent some of the time today at therapy teaching Gracie (and me!) to walk up and down the steps with her crutches. This is not something she should be able to do independently yet. I asked Laura to help us with this because Gracie wants to be able to do it. You will see Gracie practicing in one photo and coming down the slide as a reward for a job well done in another.

Gracie walked around the track in the gym before we left. This is something she does pretty well. However, you will see the disapproval in the photo when I come away from her to take a picture. She still insists on someone being right beside her when she uses her crutches. She has just gotten comfortable with me moving to the side of her when she walks rather than being directly behind her. I'm hoping to gradually move away from her as her confidence builds.

Gracie's therapists have inserted some small cork-like wedges in her shoes. They are in the heel of her shoe, to give her the slight feeling of leaning forward. This is not something Gracie does naturally so they thought this would help when she stands and walks.

Daddy's Birthday

2008-07-20T19:03:00.000-07:00

Gracie and I made birthday cards for Doug. This involved getting out all of Gracie's art materials. She has a lot! She has always enjoyed art projects, especially the getting messy part. This time I prepared her by putting on a cute art apron. She loved being able to store her materials in the sewn slits in the front.

At therapy, Gracie practiced climbing steps and going down the slide. She is now up to 14 independent steps at therapy!!!

Swimming with Nana

2008-07-20T18:53:00.000-07:00

Gracie and I had big fun last week swimming with Nana, Aunt Nell and Houston. Gracie has grown even grown more confident swimming with her water wings. She will now relax on her back and even swim alone to the deep end. Play the video below to see her in action.

We also enjoyed playing at home with Faye and her little friend, Elise. Elise is 5 years old. She was quickly comfortable and was as sweet as could be. Gracie was more interested in playing alone at the time. After they left I talked to Gracie about how it's her job to make sure that friends have fun when they come over.

Birthday Fun & Gracie's Cousins

2008-07-12T21:32:00.000-07:00

We went back to My Gym on Friday for another birthday party. Gracie enjoyed Conner's party and certainly enjoyed the equipment in the gym.

My sister (Halle), her husband, and their 8 children were in town for a quick visit today. In the picture, Gracie is showing off her tracing skills to sweet Shalom. I hate that they live so far away, in Kansas.

Friday at Therapy

2008-07-12T20:53:00.000-07:00

Gracie spent a lot of time at therapy working on sitting and standing by herself. She is pretty comfortable with standing. She has learned to sit on the edge of the bench and push on her knees to extend her legs. Sitting down is harder because it requires her to lower herself without seeing what's behind her and it's difficult for her weak legs to lower her slowly. So what happens is she gets about 6 inches away from the bench and then plops down. It's scary for her at first but she enjoys it after she learns that she is not going to fall. Laura also had Gracie practice more independent walking. Because of her fear, Gracie is still quite emotional when we have her practice the walking.

I've included a video clip below of her walking. I hope it will be easy for everyone to view. Just click on the play button to begin. If so, I'll include more videos in future posts. In this clip, Laura uses her arms to form a safety circle around Gracie as she tries to walk. You'll see her take 1 or 2 steps in this clip before she tells me to stop recording so she can see my face!

Visiting Dr. Sharpe

2008-07-09T19:57:00.000-07:00

We went to see Gracie's neurologist, Dr. Sharpe, on Tuesday. This was exciting for her because she got to see "Nurse Laura." Dr. Sharpe mainly wanted to see Gracie to follow up on her progress after the surgery. He said her legs are still not strong enough to allow her to walk independently. He told us to start using "the tickle machine" again at night. This is a device that electrically stimulates her muscles through probes that are attached to her legs in four spots. She used it for months leading up to her surgery but we have not used it since then. I was hoping it was something we wouldn't use anymore. I'm sure Gracie was too! It cycles through periods of rest and motion while she's sleeping. It sometimes makes sleeping difficult for her, as I believe it would for anyone.

It has been 2 months since Gracie's surgery. She has come so far! Her main struggle now is getting over her fear of falling when she tries to walk independently. She hates to practice because she is so fearful. However, she's amazing when she does it. Gracie has a huge support team. We are all doing what we can to encourage her to believe in herself and to persevere!

Walking 8 Steps!

2008-07-04T20:15:00.000-07:00

Gracie walked 8 steps on her own at therapy on Thursday!!!! Laura has been working with Gracie by staying behind her when she walks and helping by holding onto her knees when she needs balancing. This is very hard and very scary for Gracie. She shed a bunch of tears this week at therapy. That's okay though, because Gracie fought through the tears and walked without Laura holding on to her legs. In the first photo you'll see Laura assisting Gracie by holding onto her knees. In the second photo you'll see Gracie walking without Laura holding her legs. Because this is Laura's new focus, Gracie now thinks the crutches aren't so bad. She's even started saying, "I'm in love with my crutches now." It is so hard to see her cry but it is wonderful to see her taking independent steps!

Playdate Fun

2008-07-04T20:03:00.000-07:00

I've tried to schedule many playdates this summer for Gracie. She has always enjoyed talking to adults but she talk much to other kids her age. I'm trying to help her get more comfortable around kids. We spent one morning last week with the 3 adorable Whitson girls, and we took Ruby with us to Adventure Science Center another afternoon. Gracie was in heaven at the Whitson's home because of all of the litte girl toys. She enjoyed playing with every doll in the playroom!

Gracie and Ruby enjoyed playing at the science center. Their favorite part of the day was playing inside an ambulance. Mine was listening to them carry on a conversation about the Curious George snacks I gave them. It was precious!

Sunday

2008-06-29T19:24:00.000-07:00

We started our day by having Grandma & Grandpa over for breakfast. Gracie loves the weekends, partially because she doesn't have therapy, but mostly because of the slow pace. After breakfast, Gracie was eager to show Grandma & Grandpa all of her babies that she hid in her reading tent aka "castle". In the photograph, you will see she is a proud momma!

We later met The Slocums at the zoo. Gracie asked her usual question at least 50 times, "When will we ride the carousel?" We try to save that for last, so it's no wonder we hear that so many times. Good Ole Daddy kept lifting Gracie out of the stroller to see animals as we would stop at the different exhibits. She finally told him, "I do not care about seeing any other animals, so don't pick me up again until we get to the carousel!" She can be so sassy! To keep from getting sick, Doug and I split up the carousel riding, each 2 times. Jenna & I took some cute pictures of the kids together. The zoo is always a great place to snap some fun photos.

Before dinner, Doug and I took Gracie over to the playground at Oak Hill (where she'll be starting pre-K next year). We've been a couple of times this summer. I want to give her the opportunity to get more familiar and comfortable with the playground before she begins school there. My hope is that she will be less apprehensive about using the equipment if she has more confidence in her ability to use the pieces. She's learning. There are some pieces that she simply can't use without help. That makes me so sad for Gracie so I want to teach her how to independently use as much as she can. As we were starting to leave, the sprinklers came on. By the time we got to the car, Gracie was drenched. She ran through them several times and had a blast! (Unfortunately, no pictures of the playground.)

Saturday Fun

2008-06-29T19:14:00.000-07:00

Yesterday sweet Lizzy and her mom, Judy, came by for a visit. Lizzy was able to show Gracie some tricks on the Nintendo DS, and Gracie showed off her skills on some internet games. Then we went to Houston's baseball game to cheer for him. He played well and his team won 8 to 1! Gracie enjoyed cheering for him in the short breaks she would take from playing her DS.

A Great Week

2008-06-26T19:45:00.000-07:00

This has been an eventful week for Gracie. She has played with friends, spent time with her grandparents, gone swimming, visited her buddies at Woodmont Baptist, attended a day at Camp Ole, and worked hard on her daily therapy activities. Heidi, her other PT, worked with Gracie on Wednesday after not seeing her for 2 weeks. She was happy with Gracie's progress and so surprised about her ability to walk with the crutches. Gracie still tries to talk her way out of using the crutches and tries to "make deals" about how far she has to walk with them. I'm hoping she grows to love the freedom they give her.

A Fun-Filled Weekend

2008-06-23T07:15:00.000-07:00

Gracie has been working hard with her arm crutches. Someone has to be right beside her when she walks with them so this keeps us from solely using the crutches for her mobility. She uses her walker when we cannot be by her side. She walked into Cole's birthday party at My Gym on Saturday. She enjoyed the party and knew how to use the equipment because she went through two sessions there when she was younger.

Gracie enjoyed swimming with her buddy Cal on Sunday. She and Cal both mastered swimming with water wings! This was the first time for both of them to even use the arm floats. This was a weekend full of smiles!

Taking Steps

2008-06-20T13:56:00.000-07:00

Gracie worked even harder on her arm crutches today at therapy. She walked a long way and Laura didn't even use a belt to help balance her. She did it all by herself! Gracie also practiced taking steps independently. She took about 20 steps and only needed Laura to catch her a few times. We also timed her standing alone. She has increased her standing time to 73 seconds!

Therapy is Going Well

2008-06-19T19:30:00.000-07:00

Gracie is working hard on her arm crutches. Laura is ready for her to stop using her walker and use the crutches in its place. We will continue to use the walker for long distances but Gracie will now be using the crutches around the house and for short distances. This is quite an adjustment for all of us because someone now has to be directly behind Gracie whenever she wants to walk, just in case she falls backwards. However, it is so wonderful to see her use the crutches. She is amazing! Doug and I agreed tonight that we could finally picture her walking independently. We've certainly been hopeful all along but we feel more optimistic now, seeing her use the crutches. She is also very proud of her new talent. She has only been using them for a few days and she has progressed from hating them to even asking to use them. We are so proud of her!

After working with her crutches this morning, Laura had her practice walking on large, covered foam pieces. She especially enjoyed falling.

Tonight we met Daddy downtown to support some of his work buddies who swam across the Cumberland River. This was an effort to convince the public of the river's sanitation. Clean or not, it was a crazy site! We enjoyed a stroll on the Shelby Bridge afterwards.

Crutches & Braces

2008-06-16T11:47:00.000-07:00

Gracie enjoyed her Father's Day weekend. Doug & Gracie invited Keith & Cal and Mick & Zackery over to camp out in the backyard. They showed a movie and played Wii on the overhead screen Doug attached to the outside of the house. We borrowed tents from my dad, and Doug built a small outdoor fire. I grilled hamburgers and hotdogs for them, and they roasted marshmallows at dark. Because I'm not crazy about sleeping outside, I retreated to my bed at bedtime. Mick & Zack won the Survivor Nashville award. They were the only two to stay in the tents all night.

Over the weekend Gracie practiced walking with arm crutches. Laura has loaned us a pair from Vanderbilt so she can practice even more. Laura thought this would be a good idea to get Gracie to use less of her arms when she walks. It sounds backwards but she relies on her arms less in the crutches than with the walker. It's going well. We just have to persuade her to lean forward. When she feels unsure, she leans backwards. The crutches will catch her if she leans forward.

Gracie's new braces arrived today. Laura put them on her at therapy. She will start out by wearing them an hour a day and work up to wearing them full time. We will watch carefully here at first to make sure the fit is right. If not, the braces can be adjusted. They came with a pair of New Balance tennis shoes. They're cute, but we've been very happy with the way Chucks fit over her braces. We'll try both and see which tennis shoes she prefers.

Working in the Water

2008-06-11T15:50:00.000-07:00

Gracie had her usual water therapy yeterday. She smiled and enjoyed most of it, but the hard work came at the end of therapy. Laura had Gracie wear a weight belt as she swam on her front and back. This is what you'll see her doing in the pictures.

After therapy the day's events were decided by Gracie. I was rewarding her for sleeping through the night (first time since the surgery)! Daddy and I were thrilled! It was also great to see Gracie so proud of herself. We went to Border's where she picked out a new book. We stayed there over an hour as she pulled books from the shelves, pushed musical buttons and pretended to read. We are so fortunate that she loves books.

Our other stops included Target, Baby Kate's house and Maggie Moos's where she enjoyed bright red Twizzler ice cream.

A Fun Weekend

2008-06-08T18:43:00.000-07:00

This first picture is one of Daddy and Gracie in the waiting room at therapy, reading a book. Daddy was able to meet us Friday for therapy.
We enjoyed time with friends and family all weekend long. We met the Slocums at the Y on Saturday for a cool day at the pool. Daddy talked Gracie into going down the slide with him at the little pool and I talked her into going under the water in the larger pool. I can't say she truly enjoyed either thrill but she was proud of herself for trying and so were we!
The Smiths came over for dinner and fun Sturday night. Gracie "fell in love" with little Henry and found a fellow thumb sucker, sweet Lily Cate.
Grandma and Grandpa joined us Sunday for Wii bowling, Lego building and dinner. It's hard to tell who enjoys the time together more.

Using a Theratog

2008-06-06T17:40:00.000-07:00

As of today, Gracie's therapist would like for her to start using something called a Theratog. It is a suit that is similar to a wetsuit that wraps tightly around her chest, shoulders, hips, and tops of her legs. It is a proprioceptive device which means that it will help Gracie become more aware of her body movement and location as she tries new and sometimes scary exercises. We will begin by putting the suit on Gracie about an hour a day and work up from there. Laura, her PT, believes it will give Gracie muscle feedback and even more confidence as she works toward her goal of independent walking. Wondering how Gracie likes it? Just take a look at the bottom picture!

We asked Laura again today how she felt about Gracie's progress post surgery. Her remarks were very encouraging. Laura said that she could already see a world of difference in what Gracie could do in the first PT session after surgery and now. Laura even had to write new goals for Gracie because she has already met all of her initial goals. That sure was good to hear!

Working Hard

2008-06-05T19:17:00.000-07:00

Gracie has been working hard. She goes to therapy each day, most of the time at 9:00. She wakes up happy each morning, realizing it's summer and that I'm staying home with her this summer. Then her attitude completely changes as we pull in the parking lot for therapy. She becomes tired and combative. I know this is best for her, but it's hard to watch your daughter struggle with something daily. Gracie loves her therapists, but she knows they require her to work hard, so she asks me daily when she'll be able to stop going to therapy. I'm sure her leg muscles are sore from the daily exercise. The therapists also push Gracie to do things she doesn't believe she can do yet, so she is fearful and frustrated. Currently, Gracie is practicing sitting to stand, standing alone (Her record is 20 seconds!), and taking steps with minimal assistance.
To try to cheer her up (as well as myself) after therapy, I try to do something with her that I know she enjoys. We joined the YMCA last week, primarily for the benefit of the pools. Gracie loves being in the water, so I've taken her there 3 days in the past week. We've also been to playgrounds and parks. I try to think of things she'll enjoy and that won't require too much work from her. Gracie's days really vary right now. She goes from being a strong, confident girl to a fearful, demanding brat. When the latter shows up I try to remember how hard this all must be on her. Thank God I have Doug- for a million reasons, but it especially helps right now to know that he will be home each night at dinnertime to help with Gracie. My daughter is a beautiful, brilliant, capable girl who deserves every ounce of my energy and patience. I'm happy that I remember this even on the hard days.

Playing with Baby Kate

2008-06-01T11:43:00.000-07:00

School is now out, so Gracie and I have all summer to dedicate to making her a big, strong girl. She goes through stages of being motivated and being frustrated. She complains very little now about her legs itching. She is still unable to sleep through the night without calling us back at least once, often twice. However, it is getting easier to console her and get her back to sleep each time. The natural drug Gracie is taking, 5-HTP, doesn't seem to make a difference with her bedtime anxiety so we are still giving her 1/2 of a Children's Benadryl at bedtime. We will hopefully be able to stop both of them soon.

Gracie enjoyed some playtime with Baby Kate recently. She loves playing with all of her baby gear, too. Luckily Kate is not old enough to object yet because Gracie often borrows a toy from Kate each time she is around her.

Visiting Nurse Laura & Dr. Sharpe

2008-05-28T05:32:00.000-07:00

Yesterday, we took Gracie to see Dr. Sharpe, her neurologist. We will follow-up with him until time to go back in September to see Dr. Park in St. Louis. Dr. Sharpe wanted to see her legs after the surgery and we had a few questions for him. However, the main reason for our appointment was to visit someone Gracie loves, Nurse Laura. Gracie gets me to play Nurse Laura often when she and I pretend at home. Dr. Sharpe thought her legs looked good. He wants us to exercise her ankles more at home to keep them loose. He wants us to come back in six weeks to see how her legs are progressing.

We talked to him about the anxiety Gracie is experiencing around nap time and bed time. He said he wasn't surprised since she has had someone at her bedside for almost a month now. Her told us to buy an over-the-counter medicine called 5-THP. It's all natural and mostly contains
tryptophan which is what is found in turkey that makes you sleepy. We will try it tonight.

On a positive note, our good friends, The Slocums, returned from Florida. They came over to see us this weekend. I caught a picture of Gracie and Cal swinging.

Getting New Braces

2008-05-24T20:15:00.000-07:00

At therapy this week, Heidi took care of casting Gracie for her new braces. The new braces will be shorter than the ones she wore before having the surgery. Gracie got to choose the accent colors and pattern for her braces. The new pair will arrive shortly with pink accents and pastel hearts- so cute! In one of the pictures you will see Heidi working with Gracie to use a walker. Gracie is eager to get around quickly again but she still lacks the strength to go very far in her walker. She is primarily using the wheelchair for her mobility. Daddy even added a bicycle basket to the back!

With all that it going so well with Gracie, she is still having a terrible time sleeping. Last night was the 5th consecutive night that Gracie woke up terrified and frantic. We run back to her room after we wake to the sound of her screaming. She is inconsolable, scared, and pitiful. We assume this is some delayed anxiety from her hospital stay. She is not acting like herself and seems to have no control of her emotions. She even asks us while she's crying, "Why am I so sad?" and "When will I not feel this way?" It has been taking Gracie about an hour to fall back to sleep when this happens only to wake up feeling the same way later in the night. Doug and I (and Gracie) are all behind on our sleep and confused about what we can do to help her. We have a doctor's appointment on Tuesday. Please continue to pray for us. Once we get past this complication, we will be able to focus again on celebrating Gracie's steady progress in therapy.

Note: I posted two messages today so make sure you read both of them.

She's Now 4!

2008-05-24T19:44:00.000-07:00

Gracie has had an eventful week! Her classmate from Woodmont Baptist, Cole, came over with his mother for an afternoon playdate on Wednesday. This is one of Gracie's buddies, the same one who helped her so sweetly at the school Christmas program. During the bell songs he not only took care of his part but made sure that Gracie knew each time when her turn was coming up. He could very well be Gracie's guardian angel. They played for a little while inside and then they headed outside where they rode in her jeep and then Cole enjoyed our sandbox while I pushed Gracie in the swing. One of our goals for Gracie is to help her learn to talk to her peers. She often either plays quietly or just converses with the adults around her. We know that some of this is developmental.

Thursday we had our families come over for a small birthday gathering. The grandparents bought her a Wii and a bunch of precious clothes. As she opened her boxes of clothes, she pulled out one cotton t-shirt and said, " Oh this is a good thumb-sucking shirt!" Gracie judges the quality of clothes based on how soft they will feel when she rubs them against her cheek while she sucks her thumb at bedtime. As usual, she blew out candles on two cakes, the one for the crowd and a personal pink cake topped with a fairy and pixy dust.

Friday, I took Gracie to Oak Hill before therapy to watch my students perform some of the Field Day events. She was a celebrity there for sure! The students adore her.

Water Therapy

2008-05-20T20:27:00.000-07:00

Unfortunately, I didn't take my camera to the pool today, but Gracie had fun in the water with her therapist. This was her first session in the water since the surgery. She complained a little about her legs itching when she first entered the pool. However, Laura did a great job redirecting her and eventually she moved on. Gracie performed well today, but it was hard for Laura to keep her attention because Gracie kept going into her own little world, singing songs. Doug and I joke that her life is a soundtrack. She has a song or sound for everything she experiences. She amuses us.
She will continue water therapy every Tuesday this summer in addition to her regular gym therapy on the other days of the week. Since Vanderbilt moved its rehabilitation services to 100 Oaks Mall, the location is very convenient for us. The facility is beautiful and inviting to children. Gracie likes getting there early so she can get out of her wheelchair and into a colorful wooden car (with very little assistance).
I've only been back to work 2 days. It's good to be back. I truly believe my students missed me. They have greeted me warmly both days. Our family has been treated so well during this time. I can't keep on top of all of the thank-you notes I need to send out. That is such a good problem to have! The meals and gift certificates have been incredibly helpful. Gracie is not able to sit unassisted at this time so it's like having a baby in the house again in some ways. I'm scared to leave her side unless she's in her wheelchair or propped up somewhere with cushions or such. Falling and twisting her trunk would be very painful at this time. Until she heals, it's important for her shoulders and hips to rotate in the same direction. Cooking dinner right now is just a little more than I can manage.
Gracie has just started using her walker some again. She wants to hop right in it and go but her legs are just too weak. She can make it around the loop in our house. She is eager to be mobile again. Dr. Park expects it to take Gracie about 6 weeks to gain back her strength and endurance.

Home Almost a Week

2008-05-17T12:52:00.000-07:00

We've been home from St. Louis almost a week and things are starting to get easier. Gracie's back is not as sensitive and she has not had any itching or pain in her legs since Thursday night!! After speaking with her neurologist here and getting his input about this problem with her legs, we started her on a drug called Neurontin. It is helping with the itching/tingling sensation Gracie is having in the backs of her legs. We hope she will only need this for a week or two. We have also given her some Benadryl, but we are careful not to give this around the time of her therapy so she won't get drowsy. I have been e-mailing another family whose son just had the rhizotomy in another state. His doctor actually started him on Neurontin before the surgery and he has not had any itching in his legs. It has been helpful (and interesting) to compare stories with this family.

Therapy has continued to go well. Gracie works very hard. That's good because she is determined to do the things she could do before surgery and doesn't like not being able to do something. She has been using parallel bars in therapy to help her legs get the feel for walking. Her legs muscles are still too weak for her to try this without the bars. Gracie is now comfortable sitting independently; she just wants someone nearby. Her favorite activity right now is taking a stroll around the neighborhood in her wheelchair. As much as I love her therapists and watching her progress in therapy, it is nice to have a break on the weekends.

It is hard to believe that Gracie will be 4 years old in five days! In some ways time has certainly passed quickly. Many of you have asked what we plan to do for her birthday. We usually have a large group of friends and family come to our house to help her celebrate. Because of her condition, we believe it might be best if we just invite family this year.

Getting into a Routine at Home

2008-05-14T19:31:00.001-07:00

It is so hard right now to answer the popular question of how Gracie is doing. She is doing well in so many ways. She is giving 100% in her daily therapy and we are truly seeing daily progress. She even surprises herself with what new skill or movement she can do each day. Gracie is also improving in her endurance with her exercises. She is more willing to sit in different positions and for longer periods of time. Because of the generosity of all of you, I have been able to keep her attention while she stretches and sits with new toys, activity books, crafts, and DVDs. Because we want her close by, we have moved Gracie's bed into our bedroom. She is so thrilled about that! I continue to remind her that this is temporary.

We have had a few visitors. Gracie enjoys company because it gives her a chance to show off what she can do in her wheelchair. It also breaks up the day a bit. I have told anyone who wants to visit to please call first and to understand if you get here and she has a breakdown. Gracie has about 3-4 episodes each day where she just cries and claims to be itching. The itching is almost more than she (and I) can handle. It usually lasts about 20-30 minutes in the backs of her legs. She cannot get relief and begs me to scratch as hard as I can. We have tried many approaches to relieve the itching and/or redirect her attention or calm her. I spoke to someone in the neurosurgery department in St. Louis today about this. She said that some tingling in the legs has been reported by children who've had the rhizotomy but nothing like this. I plan to call Gracie's local neurologist and possibly her pediatrician tomorrow to get their advice. At this time, the severe itching is the worst part. When she is not itching, she is happy, energetic, motivated, and loving. I am thoroughly enjoying the time we are spending together.

Thank you all for keeping up with Gracie's progress!

Note: The pictures on this post are from the hospital. Gracie absolutely loved having her hair washed in a shampoo bowl! I definitely see spa visits in our future!

Getting Home

2008-05-12T21:48:00.001-07:00

After the last PT session at the hospital on Sunday, we all drove home. Dr. Park prescribed Valium and Tylenol with Codeine for Gracie to take before we left and then once we got home, as needed. The drive went pretty well. Gracie didn't sleep but she was very calm and easy to entertain until we got to the Ashland City exit. She then became stiff and wanted to get home quickly.

Going into the last PT session, we all felt insecure, nervous, and sure that the hospital was discharging her prematurely. However, the last therapy session encouraged us all. The grandparents decided not to go the therapy in hopes that Gracie would not cry out for their attention and assistance. She did much better with just the two of us there. Gracie knows how much her grandparents love her and hate to see her upset, so she uses this to manipulate the situation sometimes. Seeing that she was able to be moved without crying made us feel better. She even got on her hands and knees and crawled a few steps at the end of therapy.

Getting home was exciting for us all, especially Gracie. We were welcomed with a couple of banners, balloons, dinner, and even flowers for Mother's Day! Once we got her inside, we weren't really sure what to do with Gracie. It felt a lot like coming home with a newborn. Currently, she is most comfortable in the bed, on her side or back. She has been in the hospital bed that had her propped up. We wanted to set up something like that here but she is also terribly sensitive to anything touching her incision on her back. Going to the bathroom is also quite an ordeal. Right now, this is something that takes 2 people to help her do. Gracie is extremely scared of falling forward, even when she is held tightly. This is due to the weakness of her trunk muscles from the surgery. We were warned that this might happen. She will need to rebuild her strength in many muscles as well as her confidence.

I am eager to get back to work when the time is right. My boss has graciously offered me a little more time at home to adjust before returning to work (half days). School gets out at the end of this month so I'll have all summer to spend with Gracie.