The Weekend - Shhhhhhhhhhhh!

Gracie woke up bright and early on Saturday morning. I think she forgot that mommy told her she could sleep in. She was a very good girl in the morning, then took a 2 hour nap, got up at 1:00 p.m., had some lunch, and then turned into a very moody child. Nothing was quite right. We took her to the store with us and she did great when she was in her wheelchair zooming around, but when we transitioned her to and from the car seat or she was in the store trying on snow boots, it was a different story. When we got home she was still overly emotional about everything, so about 4:30 p.m. both Gracie and I layed down for a nap. We awoke at 7:00 p.m. I guess we both needed our sleep.

The long nap was just what Gracie needed. She was in a great mood the rest of the evening. We read books and there was a book that had socks, birds, and cars in it. She signed each of those words at the appropriate times We went to bed a little after 10:00 p.m. and she had a restless start to her night, but had a good night.

This morning she awoke around 7:00 a.m. and was in a great mood all day long. It was just Gracie and I all morning as daddy was playing in the band at church. She repeated a lot of words and did a lot of signing. Gracie and I watched mass on TV this morning. At one point she was getting a little loud and I put my pointer finger to my lip and said "Shhhhhhhhhhh". She didn't hesitate for a second and did it right back to me. I haven't ever used that before, so I'll have to ask daycare if they do, because it was like she knew exactly what that meant. Tonight Gracie and I had fun telling daddy to "shhhhhhhhhh", just for the fun of it.

At one point today I saw Gracie sprawled out on the kitchen floor digging for something under the fridge. The treasure she came out with was a half eaten cracker that has been sitting there for who knows how long. I took it from her just before it got to her mouth and said "yucky"...she repeated me and shook her head and kept saying "yuck". It was so cute.

Gracie, Jeff, and I took a nice walk around the big extended block today. Gracie walked most of it herself. She is getting so observant. She got excited when she saw pumpkins, enjoyed pointing out trees, and picking up leaves. For the last little bit, she got to ride on daddy's shoulders. That was great fun. Later she climbed up the deck stairs with a little help, but got very upset when she saw her water table and was told that it was too cold to play in water.

Gracie amazes me with her willingness to taste all new foods. I'm not sure there is anything she doesn't like, although she definitely has her favorites. Tonight I was eating a lettuce salad, Gracie had already finished her supper when she came up to me and wanted some of mine. I took a very small piece of lettuce with italian dressing and gave it to her. She chewed on that for awhile and came back for more. Not wanting to give her too much lettuce, I gave her part of a crouton with dressing on it. Yum, that was well received too.

Gracie had lots of hugs and snuggles today and was such a good girl. She had fun teasing me too. She has such a great sense of humor. She just makes me laugh and her eyes just sparkle. We are so blessed.

Love,
Lisa, Jeff, and Gracie

Friday - Beep! Beep!

Gracie has been having some really great days. The changes in routine that we have made in the evening have really been helping Gracie not have as many meltdowns and the ones she does have are pretty short-lived. We haven't had a plate of food hit the floor in weeks. The fusses that she does have in the evening are more typical of what a two year old would have than it being sensory integration issues.

Gracie has really been saying alot of new words the last two days. Yesterday they were just coming out so frequently I had to make sure Jeff didn't give her an overdose of her seizure meds. Whenever we up the dose her cognitive skills make a leap, but we haven't made any changes in dosage and Jeff assures me that he hasn't given her any more than she is supposed to get.

Gracie's pronounciation of words isn't perfect and you really have to listen to know what she is saying, but it will come. New words she is saying: up, down, go, stop, Heidi (the name of the daycare dog), papa (our daycare mom's husband), and eye (as she pointed to my eye). Tonight she was listening to the song "The Wheels on the Bus" and Jeff and I were cooking. It took us a minute to register that when they were singing about the horn going beep, beep, Gracie was saying "beep" "beep". She is also doing really good with sign language. Tonight we were reading a counting book that had birds, cars, and socks and she signed all three of those words.

Gracie is also finding great fun in sitting at her Little Tikes table and playing her piano. Sometimes she also reads a book at the same time. She is becoming quite the multi-tasker. She will sit there for 10 minutes at a time. For those of you that know Gracie, she doesn't sit anywhere for 10 minutes at a time.

I can't wait to spend the full day with her tomorrow and see what new things she comes up with.

She is sleeping now and I think I'm going to join her shortly.

Love,
Lisa, Jeff, and Gracie

Tired Thursday

Hi it's Jeff the dad. This is going to be a short one. Everyone in the house is really tired!

It was a great night. Grace was in a good mood and jabbered like crazy. Some new words and lots of laughter (for all of us).

I am the only one that is currently awake & my status will be changing soon. So this is the end of tonite's update.

Have a great night!

Jeff, Lisa, and Gracie

Wednesday - Getting Beauty Sleep

Gracie awoke at 3:00 a.m. and was wide awake. She tried to fall asleep, she tossed, she turned, we snuggled, we rocked, finally I picked her up and we bounced as I walked the floor with her. She finally fell back to sleep at 4:00 a.m. She was up bright and early at 5:45 a.m. She thought it was great fun to come into the bathroom and sit on the closed toilet while daddy brushed his teeth and mommy was blow drying her hair. Daddy left for work and while mommy curled her hair, Gracie was busy brushing her teeth and smiling at herself in the mirror.

Gracie had a good day at daycare and took a really long nap. She slept from 12:30 p.m. until 3:00 p.m. Making up for the hour that she was awake during the wee hours of the morning, I think. When I picked Gracie up she was in a good mood. When Papa from daycare came home from work, Gracie greeted him with a smile, a "hi", and gave him five.

Gracie was thrilled to see that daddy was home when we arrived home. Daddy was taking a quick rest on the couch and Gracie went over and layed her head on his chest and just snuggled for awhile. We all had a nice dinner together and Gracie was a very good girl throughout.

After dinner it was splish-splash bath time. She was a wild girl in the tub. After tub time daddy, mommy, and Gracie all snuggled on her bed and read lots of books. She snuggled in and was very content and happy to have mommy and daddy hanging out with her.

She fell right to sleep tonight and seems to be sleeping peacefully. Hopefully she will have sweet dreams and a calm night.

Love,
Lisa, Jeff, and Gracie

Tuesday - Happy Girl

Gracie had a good night and woke up a little before 6:00 a.m. Jeff went to lay with her for a few minutes when she called out but couldn't get any smiles out of her. Mommy stuck her head around the corner and got a great big huge smile. Everyone knows that mommy is "it" in the morning.

Gracie was a little tease this morning. It was time to go to daycare and she had her coat on and we were ready to go. She is standing by the couch looking at picture books. I tell her to come on over we have to go. She doesn't budge. I tell her again and see that she has this gleam in her eye and she's not coming over because she is teasing me. I finally say "Gracie, are you teasing mommy?" She gives me a big smile and came on over.

When I picked Gracie up at daycare she was snuggling with Michelle. She did a project at daycare where they glued cotton balls onto a picture of a sheep. It is so cute and Gracie was so proud of her work. She just beamed when I looked at it and oohed and aahed. We put it on the fridge at home and she was thrilled to show it to daddy when he got home.

Gracie was a very good girl this evening. She was excited to see daddy when he came home around 7:00 p.m. and her first order of business was to get a piggy back ride from him. We read books and looked at magazines and then she was ready for bed. She was a tired girl tonight.

Love,
Lisa, Jeff, and Gracie

Monday - Physical Therapy

Gracie woke up bright and early at 5:15 a.m. this morning. I guess she was just done sleeping or she is figuring out that if she wants time with daddy, she has to get up early. When I got out of the shower and saw that she was awake and running around, she gave me the biggest smile. She was a good girl all morning and even was cooperative when I put her in her car seat on the way to daycare. It was snowing on the way to daycare and when we got out of the car, she loved it falling on her face. I also showed her some snow on a plant, but I'm not sure she quite gets what snow is quite yet.

She played shy for a minute when we got to daycare and then marched right over to Michelle and sat on her lap and snuggled in. By the time I left her eyes were getting heavy. The daycare kids got to eat in the dark today as the electricity went out for awhile. A tree had fallen on some electrical lines. I picked Gracie up at 3:20 p.m. and we headed to the clinic for physical therapy. She was in a super mood and did great. Gracie's PT concurred that Gracie's muscles are tight again and she is walking with her knees very bent again. This is a sign that her bones are growing and her muscles aren't keeping up. We will just need to do more stretches with her and really work on those muscles.

Today at PT, Gracie walked on the treadmill for a long time, she did really good on it. She also walked up the stair steps to the slide all by herself using her feet and hands and not being helped at all. Gracie ran up and down the hallway. They use the hallway that goes to the clinical assistants. Do you know how proud a mother can be, when her daughter runs as fast as she can up the hallway and all 4 of the clinical assistants stop what they are doing and clap and yell "Yay Gracie!!!!" Gracie was beaming, I was beaming, and pretty soon from around the corner, Gracie's neurologist (who we all love) peeks her head around the corner. Dr. N said she heard everyone cheering for Gracie and thought "Hey, I think she is one of mine!" So she came to see. Sure enough Gracie gave her a great big hug. Dr. N. marveled at how well she was doing.

Gracie also sat on a scooter and was given a rope to hold onto. The PT pulls the rope, Gracie holds on, and then she gets pulled down the hallway. This is really good for her core strength. Gracie has never been successful with this, she lets go of the rope almost immediately. But not today, the first three times she let go and on number four the concept sunk in and she got it. Gracie also did some bouncing on a half exercise ball. We are trying to get her to jump. It was a GREAT day.

On our way back to our car, we ran into Auntie Sheila. So Auntie Sheila decided she was going to push Gracie's wheelchair and give her a fast ride, complete with "zoom" sound effects.

Gracie had a great evening too. She was happy and cooperative. I'm content and happy as I marvel over our successes today. It's hard not to be just bursting with pride.

Love,
Lisa, Jeff, and Gracie

Sunday - The Duncan Girls Solo Again

Gracie had a good night and I think she was happy to have the nice warm fleece blanket that I added to her bed last night. She awoke at 5:45 a.m. and had a little time to spend with daddy before he left for work at 6:30 a.m.

Gracie and mommy spent the morning doing laundry, playing Mickey Mouse Playhouse stuff on the computer, attending mass on TV, and reading books. Gracie was a very good girl today and was very happy, smiley, and quite content just playing, dancing, and listening to music. Gracie took an hour nap this morning and a rather restless 45 minute nap this afternoon.

She ate a huge lunch and her favorite food was the green beans. She couldn't get enough of them.

This afternoon Aunt Sheila and cousin Jason came to visit and play. Gracie had a great time playing and chasing Jason. She would squeal with delight as she would try to catch him as she ran around the island in our kitchen.

I think Jason tired Gracie out as she was pretty mellow the rest of the night. She was plain tired. She sat on my lap and rocked for the longest time. Daddy got home around 7:00 p.m. and Gracie was excited to see him. The first order of business with daddy was a piggyback ride. :)

Gracie is now peacefully sleeping after a fun weekend.

Love,
Lisa, Jeff, and Gracie

Saturday - Time With Mommy AND Daddy

Gracie had a pretty good night with a few restless periods, but for the most part a good night. She awoke at 6:30 a.m. and was quite snuggly and happy. Her smile got bigger when daddy joined us in Gracie's bed. Gracie is most content when mommy and daddy are both at home with her. We had a good early morning eating muffins, playing, and watching Disney's Mickey Mouse Club House.

I left daddy and Gracie for a hair appointment and a badly needed trip to Target as we were out of everything. Gracie and daddy had a good morning together. By the time I got home they had eaten lunch and Gracie was napping. Grace only slept about 45 minutes and then was up for the day.

Then Auntie Kathy came over and took daddy out for the afternoon to go car shopping. Gracie and I took a walk outside and she got to pet a big neighbor dog. She wasn't too sure at first, but then voluntarily put her hand out to pet him. It was too cold and windy to be out for long, even though she had on her winter coat and her brand new Dora hat that she loves. When we went back inside I zipped some of her neck skin in her jacket zipper as I was unzipping it. Oh she felt that and cried. I felt absolutely horrible.

Gracie was such a good and happy girl today. She talked up a storm and just jabbered and jabbered all day. I attribute this to the fact that Jeff and I both were home today.

Gracie is definitely on a growing spurt again. She loses her balance so easily and just falls over. Her leg muscles are so tight, especially on her right side. We've been doing stretches twice a day and we can't get her right leg stretched out.

Gracie went to bed about 9:00 p.m. and was a tired girl from all the activity.

Love,
Lisa, Jeff, and Gracie

Friday - Snuggling with My Dad

Gracie had a fair night, she had times when she was so very restless. Daddy came in to lay by her this morning while I took a shower. When I came in the room to wake her to get ready for daycare, she was snuggled in with Jeff and I hated to wake her up, almost as much as she hated me waking her up. She whined and fussed, but finally realized that there was a new day ahead for adventures and of course, her favorite show these days....Mickey Mouse Club House.

Gracie was happy to get to daycare and I don't even know if she realized I was leaving. Bye mom! She got birthday cake at daycare as one of the babies turns one this weekend. She also had a couple of really cool tatoos on her arm. When I picked her up she seemed really tired.

When we got home she immediately signed that she wanted music...and then some yogurt. She also guzzled down two big glasses of Gatorade. That's been our new ritual, she has a tub of yogurt before supper. I use it to give her meds and tied her over til suppertime. She loves to sit on my lap as I feed it to her. It's mommy time! Gracie hated yogurt as a baby and then couldn't tolerate it for awhile -- she's my soy girl. She seems to be tolerating it just fine as long as we only have one tub of it a day and she LOVES it.

Daddy came home and brought us Chinese food. Gracie had some leftovers too and then shared mommy's Chinese food. I have to be careful what I give her as the veggies aren't cooked soft enough for her. Gracie doesn't mind sharing food from my plate. She really likes the rice and the crab rangoons. Let's be serious here, what food doesn't Gracie enjoy? She really seems to enjoy just about anything I give her to eat.

Gracie had some great snuggling moments with daddy tonight. After supper she climbed up on him and just wrapped her arms around his neck and snuggled in. All the long hours working have taken their toll on Gracie. Tonight she snuggled in with him on the couch too.

Gracie enjoyed her bath and the splashes were going over our heads. I think I filled the bathtub a little too high. Fun, fun, fun.

Gracie is now asleep and seems to be very restful.

Have a good weekend.

Love,
Lisa, Jeff, and Gracie

Thursday - PT

Gracie had a terribly restless night. She just couldn't seem to find a comfortable position. This went on most of the night. She woke up while I was in the shower, so she got a few minutes with daddy before he went to work. I got big smiles when I walked out of the bathroom to say good morning.

Gracie had physical therapy this morning, but was very clingy and didn't want anything to do with Sandy for a few minutes. Once she warmed up a little she worked on stepping up onto mats and stepping down. This is a hard concept for her little muscles to register. We're taking it slow. I've been thinking that Gracie's knees are really tight again and Sandy confirmed my thoughts. I'm pretty sure she is growing again. Gracie also bounced on the exercise ball and did sort of a wheelbarrel move over the ball to work on core strength.

When I dropped her off at daycare she did not want to stay...that is until Barb turned on the music. Suddenly it was "mom who"?

When I picked Gracie up at daycare she didn't want to put her coat on. She finally did, then went upstairs to say goodbye to Papa and we headed home. She helped mommy make supper by putting noodles into a pan. She ate a good supper and was thrilled when daddy arrived home about 6:30 p.m.

It was bath night, which is always a hit. She was a tired girl and fell asleep very quickly this evening. She already seems to be more calm and restful this evening.

Love,
Lisa, Jeff, and Gracie

Wednesday - Back to the Routine

Gracie had a good night and awoke bright and early at 5:45 a.m. After a little snuggling she was ready to hop out of bed. She was happy to eat her pear sauce with her "sprinkles" (seizure meds), but wanted nothing to do with milk or a waffle.

When I dropped Gracie off at daycare it was evident that she had spent the last 4 days hanging with mommy and was really clingy and a little weepy when I left. That just tugs at my heart strings, even though I know she is fine after I leave.

Gracie had a good day at daycare, although her appetite was down quite a bit still. When I arrived to pick her up, she was in a great mood and was watching the Twins game.

Gracie was very clingy when we got home and just wanted to be held. She ate a pretty good supper and was tickled when daddy arrived home a little earlier than expected. She was so tired tonight that her mood was unpredictable -- one minute she would be smiling and the next she would be having a meltdown. Yet, as tired as she was, she had a hard time falling asleep.

She is now sleeping soundly.

Love,
Lisa, Jeff, and Gracie

Tuesday - Feeling Better

We are now 24 hours fever free! Gracie was even a little stir crazy having to stay in the house today. She was a good girl and had some good successes. I pulled out the Memory game and used the cards as flashcards for words. I pulled out the picture of the dog and Gracie said "dog". She also of her own accord leaned over and gave me two kisses today. Kisses are few and far between. We get lots of hugs, but rarely kisses.

We read lots of books today, sang lots of songs, did a little dancing, and played "shoo" Gracie away from the dishwasher. She loves to open the door, even though she knows she is not supposed to.

Gracie did have an accident and fell into the tv stand and gave herself a bloody nose. There was blood everywhere. She didn't fuss until she saw her hand covered in blood. We got it stopped, cleaned us both up, gave lots of hugs and TLC and all was better.

Gracie, once again, was thrilled to see daddy come home. She wanted to hang out with him instead of go to bed tonight. So they got to watch the end of the Twins game together.

Love,
Lisa, Jeff, and Gracie

Monday & Tuesday - The Fever Continues

Gracie had a rough night on Sunday night. She ran a fever of 101 all night long even with Motrin. She couldn't sleep, so I spent most of the night holding, bouncing, or cuddling her. At 4:45 a.m. I gave her some Tylenol and that brought the fever down.

Gracie slept from 7:45 a.m. til 10:45 a.m. and I snuggled in with her. Although I was tired, I couldn't sleep. Perhaps it was mothers' worry.

Gracie had a pretty good day. You could tell that she wasn't her normal self, but we did alot of snuggling and read about 10,000 books. No we don't have 10,000 books, but we read the same ones over and over. I think I've got the record for reading "Barnyard Dance" 10 times in a row. We also listened to alot of music and did some dancing.

Gracie's appetite was pretty light, but thankfully she drank plenty. Perhaps it was that I was allowing the orange Gatorade to flow freely. That is a great favorite of hers.

Gracie took a 90 minute nap in the afternoon and this time I slept too. It felt great.

Gracie didn't want anything more than yogurt for supper and then her fever came back. So we gave her more Tylenol which helped. Gracie was thrilled to see daddy when he came home. He's working long days, so she isn't seeing much of him lately. She greeted him at the gate over the stairs with "Hi Daddy". Her first request was a piggyback ride. Whee!

Gracie had a hard time falling asleep. She got to watch some of the Vikings vs. Packers game with mommy and daddy. I'm almost sure I heard her say "Go Favre!".

Gracie had a good night and this morning her fever is gone. She's been a good girl, a little clingy and her color isn't back quite yet. We've cancelled her OT appointment today and PT yesterday. We don't want to pass her germs along. Hopefully she'll stay fever free today.

Love,
Lisa, Jeff, and Gracie

Sunday - A Girl with a Fever

Gracie awoke in a good mood and again got to see daddy for a few minutes before he left for work at 6:30 a.m. Gracie was a good girl all morning. She even took an hour long nap. She wasn't too hungry for lunch though.

After lunch we headed to the mall as I was in need of some new shoes. Gracie was good as gold while we were shopping. She made a new friend (a three year old boy named Riley) while I was trying on shoes. I did take some pants into the dressing room to try on and looked horrible in them so I said "yucky" and Gracie thought that was great fun and kept saying "yuckkkk" to repeat me.

When we got home, she felt hot as I took her out of her car seat. Sure enough she has come down with a fever. I'm guessing it is a result of her flu vaccination on Friday afternoon. The literature indicated that could happen. Some Motrin helped to bring it down, but she's been running warm. Despite being pretty snuggly for awhile she has been in a good mood and interacting. She got to have chicken nuggets for supper and gobbled those right down.

When Jeff came home from work around 7:30 p.m., she was absolutely thrilled to see him. She hopped on his back and was ready for a piggyback ride.

I just put her down, but will have to check on her frequently during the night and keep that fever under control.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Saturday - Visiting is Fun

Gracie woke up at 5:45 a.m. while I was in the shower this morning. When I came out, she was all smiles helping daddy eat his bagel. Daddy left shortly thereafter for work and it was Gracie and Mommy for the day. Gracie was a very good girl all day long. We played, we danced, we sang, we made and ate chocolate chip cookies and even had a half hour nap while snuggled on mommy's lap. Oh I treasure those times.

After a good lunch, Gracie took an hour nap and then we headed to Aunt Sheila and Uncle Chris' house. Gracie had a great time playing with her cousins, Kayla and Jason. They treat her like a princess and play lots of fun games with her. She got to play the piano and loves when Kayla and Jason play it with her. I actually think she enjoys it more when they play and she can sit by them and listen. Jason played the trumpet for her and she had a great time clapping for him when he would finish a song. Kayla was wearing slippery pants and Gracie thought it was great fun to slide down her legs.

Auntie Sheila made a yummy supper and Gracie ate and ate and ate. She fell asleep in the car on the way home and was surprised to see that daddy was home from work when he took her out of her carseat. Daddy sang to her for awhile, but when it comes time to sleep, mommy is "it". So mommy sang her to sleep. With all the running and playing she did today I think she will sleep well tonight.

Love,
Lisa, Jeff, and Gracie

P.S. Cousin Jason loaned Gracie her Halloween costume for this year. Any guesses on what Gracie is going to be for Halloween??? :)

Friday - Flu Mist

Gracie awoke at 5:55 a.m., just before daddy left for work and was all ready to snuggle with mommy for a few minutes. Then she was up and about and in a good mood. She was hilarious at the breakfast table, just being goofy. For the first time in about a month she didn't fight me when I put her in her car seat. I hope she is realizing that mommy always wins that battle. Although if she grows too much more, I'm not sure I'll continue to win.

Gracie had a good day at daycare and when I picked her up about 2:30 p.m., she was still napping. I had to wake her up so we could make our flu vaccination appointment. We made it in time and I was surprised to find out they suggested the Flu Mist that you inhale rather than an injection. This is a live virus vaccine, so I hope all goes well. Gracie did really good with it from the perspective of inhaling it. We had a few errands before we headed home and Gracie did really good throughout. Our very last stop was Baker's Square where I picked up a couple of pies to go. Gracie was getting pretty hungry about this time and was eyeing all of the pies in the glass case. When it was time to head out the door with our purchases, she insisted that we couldn't go because she wanted some pie. She kept signing to me that she wanted pie. She wasn't whiny about it, but very insistent. Good thing I had some cookies in the car to take care of my hungry girl.

Gracie was a good girl for the rest of the afternoon and most of the evening. We did have a little supper incident when she started to choke on a banana chunk that she put in her mouth that was way too big. After that I cut the banana in fourths the long way. Well that was just not how she thought they should be, so attempted to throw her plate on the floor. But as luck would have it, mommy is getting a pretty fast arm and it never made it to the floor.

Jeff got home about 7:00 p.m. from work and Gracie was excited to see him. His days have been long lately, so she misses him. While he ate supper, she just sat on his lap. She loves her daddy, no question.

Gracie was a tired girl this evening, probably because I woke her up from her nap. It didn't take her long to fall asleep at all. I think I'll go snuggle with her.

Love,
Lisa, Jeff, and Gracie

Thursday - Silly Happy Girl

Gracie awoke in a bit of a grumpy mood this morning, but as soon as I snuggled with her a little bit, the happy girl returned.

Jeff and I are pretty sure she is in the growing mode again. She is walking with her knees bent more than she has of lately. This is indicative that her bones are growing, but her muscles aren't keeping up. We've also noticed her losing her balance more frequently. This is a sign that she is figuring out how to work her body again. She also discovered that she can reach all of the light switches and thinks it's hilarious to turn them off and on and off and on and off and on.

Gracie had a good day at daycare. She took daycare mom Barb and Papa around the house for a walk. She also blew Papa kisses. When I arrived to pick her up, she was just plain silly. She had a big smile and was having a good time. That was pretty much the theme for the night.

She was sitting on my lap when Jeff came home tonight. She literally jumped off my lap in one great big leap to run to the gate to greet him. We had a pretty good evening, that is until mommy put some soft socks on Gracie for bedtime. I didn't even think about them not having grippers on the bottom and she slipped and fell in the kitchen. She just doesn't have good enough balance to maneuver without the gripper socks. She was not happy about the fall.

It took Grace about 1,5 seconds to fall asleep tonight. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Wednesday - A Sparkle In Her Eye

Gracie had a good night and awoke in a great mood. She was smiley and found it extremely funny when I plopped a waffle on her finger through the hole she had dug in the middle. Gracie has a great sense of humor and I think she gets funnier every day. She just cracks me up.

Today it was time to leave for daycare. Gracie is in her coat, ready to go. The only thing I need from her is to head toward the gate that goes down the stairs. I tell her it is time to go, so come on. She is kneeling on the floor, and just looks up at me with this sparkle in her eye, that said "come and get me". I did, of course, and was treated to some great giggles.

Jeff picked Gracie up at daycare and they played outside when they got home. By the time I got off work and picked up a few things at the grocery store, Gracie had already eaten and was ready to play. She was thrilled that she got a sticker for not putting up a fuss when she got her face and hands washed after supper.

Gracie has a great obsession with my belly button. She likes to suck her thumb and stick her other finger in it. This is quite embarrassing, as I can't tell you how many times in public she has attempted to lift my shirt up. I'm sure this has to do with her sensory issues, but this is one habit we need to break.

Gracie loves the song "Bonnie the Beautiful Butterfly". This is a song on her Gymbo videotape. She has a sign for when she wants that particular song sung. She loves to have it sung to her in the bathtub, while we do hand motions. Before we even finish the song, she is signing that she wants us to sing it again.

It took Grace about two seconds to fall asleep tonight. I'm not sure it will take me quite that long.

If you have any extra prayers to spare, sending a few Gracie's way would be very much appreciated. Gracie is getting the flu vaccination on Friday. We are pretty sure Gracie's I.S. started as a result of her 15 month pertussis vaccine. Any new vaccinations right now scare me. Don't get me wrong, I am very "pro" vaccination. I'm just convinced they have to be at the right time with good seizure control.

Love,
Lisa, Jeff, and Gracie

Tired Tuesday

Hello, this is Jeff the Dad writing today.

Grace started stirring about 5:30 this morning and finally got up to share some of my breakfast at 5:40. I had to leave for work @ 6:00, so don't really know what kind of morning it was.

When I picked Gracie up at daycare today - I was told she had a good day. She was proud of the sticker she had been awarded today and was also proud of her leaf masterpiece that she had constructed (along with the help of Barb and Michelle, no doubt). It is some leaves (that I am guessing we picked today) that are fastened to a sheet of orange construction paper (our fave color) - and the laminated to keep it dry from spit, spilled milk, etc. It really is quite neat. When I asked, "Gracie, is this your picture?" She was so very proud, and had a smile as big as her whole head.

Then it was off to OT with Ms. Kathy. Let's just say that OT did not go as well as planned. Grace is feeling either very tired or a little under the weather. She was very disinterested and uncooperative. After about 30 minutes the committee of Kathy, mommy and daddy decided that today's session was pretty much over before it even started, and wrapped up early.

Grace fell asleep on the way home from the Clinic, and then I left for a meeting at church. When I arrived home, I was the only one awake in the house (thus the blog duties falling to me tonite).

Since starting today's entry, Lisa did get up and told me that Grace did get a sticker for being a good helper when putting on her sweater this evening. Other than that, she was pretty tired and snuggly for the whole evening. I certainly hope she isn't coming down with something!

Have a great night (or day, depending on when you read).

Jeff, Lisa, and Gracie

Monday - Early Intervention

Gracie had a good night and was a happy little girl this morning. We awoke to a chill in the house, so had to get out long sleeves and long pants for daycare.

Jeff dropped Gracie off at daycare today and she was happy to see her friends. When I picked her up today, she spied me and shook her head "no". I guess she didn't want to come home with me. That was confirmed when I put her coat on and was ready to go and she flew to the tv to listen to tunes. From the smile in her face and the gleam in her eye, I knew she was teasing me.

We headed home for our appointment with Gracie's early intervention teacher. We worked on coloring, putting puzzle pieces in the right slots, and catching up on Gracie's newest successes and Emily gave us great suggestions for our next steps in learning, specifically for sign language so that we continue to grow in the opening up of communication.

We had a pretty good evening. Gracie had a few "moments" but overall we had a good night. She was more than ready for bed by 8:00 p.m. It took her about two seconds to fall asleep. I think it will take me less than that!

Love,
Lisa, Jeff, and Gracie

Sunday - Mommy's Girl

Gracie had a good night's sleep and awoke bright and early at 6:30 a.m. She was a good girl all morning. Jeff was giving the sermon at his church today, so I knew better than to take Gracie there. That was all I needed was to try to keep a 36 lb., strong-willed child off the stage when she wants to see her daddy. Gracie was a good girl, for the most part, during church. The rest of the morning she helped me with laundry, we played, read books, and just had a great morning.

When it came to nap time, daddy just would not do. When she awoke from nap, she crawled out of her room and Jeff went to greet her, she crawled right past him and headed to mommy. I cherish the mommy days, as she is definitely Jeff's biggest fan. It's funny how she goes to us for different things. Mommy is the snuggler, the person to go to when the TV isn't working right (she likes to change the channels and then gets mad when her show isn't on), when she is sad, tired, or just plain needs snuggling. Daddy is the fun guy who gives great piggy back rides, plays chase, and plays tag outdoors.

Gracie only took an hour nap and it showed. She was a little more moody this afternoon and when she didn't get her way, she let us know about it. We did get her out of the house for a few errands and that did her good. When we got home it had gotten cold and windy, so we got our jackets on and played outside for awhile. Gracie loved the wind. This makes me laugh, because for the first year of life she HATED the wind. She would constantly gasp when out in it. Today when a big wind gust hit her in the face, she put her face up to the sky and smiled this goofy big smile. Sort of like, bring it on!

Gracie had a rough evening. She was just too tired and she was either very happy or very unhappy. There really wasn't any middle ground. A bath did help the situation.

Gracie is now soundly sleeping, getting her rest for the busy week ahead.

Love,
Lisa, Jeff, and Gracie

Saturday - A Very Happy Girl

Gracie had a pretty good night. She was a little restless at times, but during those times she just snuggled closer. At 2:30 a.m., I got up to go to the restroom and as I walked out of the bathroom, who did I see, but little Gracie looking for me. She treated Jeff and I to a morning of sleeping in. She didn't wake up til after 7:30 a.m. That felt like heaven!!!! I think we all needed that.

All that sleep made for one hungry girl. I made cinnamon rolls for breakfast and Gracie ate 3 of them, as well as some pear sauce and milk. We had a pretty lazy morning of baths/showers and just playing and reading books. It was a fun morning and it's days like this where I can just hang out that I really notice the progress Gracie is making. More words, more signs, and she is really getting a connection between things. She has the greatest sense of humor too.

Gracie ate a good lunch and then took a very short nap. Then we headed to the mall to pick up a few things. Gracie was a good girl. When we went to Bath & Body Works, Gracie was instructed she had to keep her hands on the wheelchair and not touch anything (a couple of months ago she pulled down a ton of bottles on a display). She followed directions. Yay. She also charmed the sales clerk. :)

On the way home from the mall she got a lemon cookie. She would just lick the cookie and smile, as if to say "I am such a big girl". It took her the whole way home to finish that cookie. Once we got home she took a longer nap and then we went outside to play. She was thrilled when I let her carry a big maple leaf on our walk. Then when she was done with it, she pulled it apart and threw it on the ground. She was totally enthralled with the pumpkin windsock on our neighbor Diane's porch. She kept marching up and down Diane's driveway to get a closer look. When she would get up close, she would look back at me to see if it was okay that she was there and then she would give me a big smile. Gracie knows what pumpkins are and really likes them. I think it will be fun to go to the pumpkin patch this year. When neighbor Marti got home, Gracie walked across our front yard, by herself, to say "hi" to Marti. She then took her hand and took her for a walk.

After that it was supper time and Gracie was a good eater again. Gracie was really good all night long and we had a fun night just hanging out. One of her favorite things these days is getting ponyback rides from daddy. She just hops on his back and lets him know when she wants one. She wants these rides alot! :)

It was a great day at our house. We hope it was at yours too.

Love,
Lisa, Jeff, and Gracie

Friday

Gracie had a good night and when I walked into her room this morning, she and daddy were snuggling and talking. She greeted me with a huge smile and couldn't wait for me to snuggle in with her too.

Gracie had a good day at daycare and then since daddy picked her up early, she had fun hanging out with daddy. She had a good evening for the most part. It wasn't quite as calm as last night, but we used our new techniques and it seems to be helping.

All the fresh air from being outside with daddy this afternoon tired her out. She was asleep before 8 p.m. and she hasn't moved a muscle.

Love,
Lisa, Jeff, and Gracie

Thursday - Sensory Integration Appointment

Gracie had a pretty good night and awoke with a smile again...well that is after we snuggled a bit. She was a good girl this morning and had a lot of smiles for her mom. While I pack our stuff up for daycare and work, Gracie gets to watch Mickey Mouse Club House on the Disney Channel. When it was over this morning, she was so upset. She many times changes the channel on the TV and then comes and gets me to fix it. Well today she thought mom was the almighty fixer, but it just wasn't happening. It was sort of comical to watch her demonstrate her annoyance.

When I dropped Gracie off at daycare today, she got all excited to show me her sticker sheet. She gets a sticker every time she drinks her milk from a sippy cup and when she sleeps in one of the bedrooms rather than in the open play area. She is SOOOOOOOOOO proud of these stickers and the more I ooooh and ahhhh over them the prouder she gets. It is so much fun to watch her beam.

Today Gracie met with the Sensory Integration specialist for the second time. It was again eye opening to both Jeff and I. We continue to learn so much. Our biggest issue is evenings, whether it be weekday or weekend, she is good all day and then seems to have these huge tantrums. I can't remember the last time we had a peaceful dinner where we could actually finish a meal. These tantrums we found out, aren't tantrums at all. I should have known that, because she can never self soothe herself out of one of these at night, it just escalates and escalates and the only way it ends is if we hold her and calm her. For normal tantrums throughout the day, if we ignore her, she soon realizes she's not getting her way and gets over it. Her nighttime fits are actually sensory overload or in her case underload. She has just had it, she can't self soothe because she is just done! She has nothing to draw from.

The occupational therapist made us realize the expectations we have for Grace sitting at the dinner table are too much for her for starters. We will get to that point, but it will take baby steps. The goal is to never get to the point of one of these episodes. She really broke it down for us as far as the very special needs and therapy approaches we need to take with Gracie. In addition it took her no time at all to realize that music is what makes Gracie tick. She encouraged us to use this to our advantage. In the evening we should transition to soft calming music. So we have a game plan for the next month for an evening routine, we'll then go back for another appointment at that time.

If tonight was any indication, I would say we are on the right path. This was the first really enjoyable calm evening we have had in weeks. Gracie was a pretty happy girl for the majority of the night. Jeff and I were talking the other night and I told him, I am happy to use whatever technique it takes, but I wanted someone to tell me if the techniques I am using are right or wrong. Well I got my wish today. It seems that if we had a "normal" child, I was using all of the right techniques, but Gracie isn't a "normal" child. She has special needs and that means we go a little slower, still have expectations, but get to them a little slower while meeting her sensory needs.

I thank God that we have all of these great specialists at our fingertips.

Love,
Lisa, Jeff, and Gracie

Wednesday - ROARRRR!

I should have known it was going to be a great day, when I walked into Gracie's room this morning and was greeted with a big ear-to-ear smile. At the breakfast table she was leafing through my Parents magazine and pointed to a tiny little picture of a lion. I said "yes, that's a lion...ROAR", her head quickly flew around to the living room where she has a lion on a mylar balloon. I acknowledged that yes that was a lion too. She gave me a big smile, looked right at me and in a big voice said "ROAR".

Gracie had a good day at daycare. At about 10:00 a.m. everyday they take her orthotic braces off of her feet to give her a break. Today it was a little before 10:00 a.m. and she sat down and tried taking her shoes off herself. Tonight when I was asking her about it at home, she kept signing the word "shoe".

This week has been a great week for her cognitive skills. She seems to be understanding and responding to so much. Her tantrums in the evening are even becoming less severe this week. I hope that is a sign of good things to come. She is still quick to hit daddy in the face or pull mommy's hair if she is told "no" when she wants to do something. We are relieved that this doesn't seem to be a problem at daycare.

Tonight I was reading her a book before supper and I had read it twice already. When she wants me to read something again, she kind of does this little high pitched "want" sound. Well she wanted me to read the book again. I told her if she wanted me to read it again, she had to tell mommy "more". Sure enough, she signed "more".

Gracie was out on the deck with daddy for a little while tonight and they saw a bird. Jeff told her it was a bird and she signed "bird". A whole new world of communication through signs and a few words is making Gracie less frustrated. She beams when we know what she is telling us.

After a bath tonight, we read a few more books. She was a tired girl and fell asleep very quickly.

Love to all,
Lisa, Jeff, and Gracie

Tuesday - Physical Therapy

Gracie had a great night last night. I ended up having to wake her up this morning and it took her a bit to decide she was ready for the day. Gracie loves the rain and thought it was pretty cool when it rained on us on our way into daycare today.

Jeff picked Gracie up at daycare and headed back to the clinic for Gracie's physical therapy appointment. I joined them a little late as they had already started the session. Leslie, our physical therapist at the clinic, was in agreement with Sandy, our physical therapist through the Birth-to-Three program, that Gracie's new orthotic braces for her feet fit very nicely. YAY!!!

Gracie looked so tired when I arrived, and although she was distracted very easily, she had some huge successes today. Her muscles in her legs are getting stronger and stronger. She is standing up so much straighter these days and she doesn't seem to have the tightness in them that she did. All of our daily stretching is paying off. Gracie talked a whole lot more today at PT. Her big success was walking up the four steps to the big slide at physical therapy ALL BY HER BIG GIRL SELF. She used hands on the railings and walked up on her own. Jeff and I were so proud. When we started with the steps, Gracie didn't have the concept of how to use her hands with the railing. We have used repetitioin to teach her how, but it was a tough concept for her to get, so this success was SWEET!!!!!

Gracie also pedaled a tricycle for three turns. Leslie was trying to teach her to use her feet to pull herself forward on the tricycle. Instead, Gracie put her feet on the pedals and began to use them. She also did some running at PT today and the exercise gym was filled with all her favorite kiddos, who tend to frequent the late in the day appointments.

On the way home, Gracie rode with daddy as I ran to Target to pick up diapers and few other supplies. I think I've mentioned she has this new thing where she likes to stick her fingers down her throat and gag herself so she throws up. If you tell her to stop, she thinks it is hilarious and since you are driving, you can't do a thing about it. Needless to say she threw up all over again. I'm pretty sure it is an attention getting action, but I think I will check in with her pediatrician to see if she has any ideas.

When I got home Gracie and I read alot of books and then it was time for bed. It didn't take her long at all to fall asleep. Sweet dreams to all of you.

Love,
Lisa, Jeff, and Gracie

Monday

Gracie had a very restless night. She woke up a couple of times through the night and was all over the bed. She ended up with her head where her feet should be. She awoke for the day at 5:30 a.m. in a good mood.

She was happy to go for a ride with daddy to daycare and when I picked her up she was in the best of moods. She was giving Papa Norm "high fives" and she was making funny faces at Michelle, and there were smiles for Barb and mommy.

Gracie had a few fits of anger at the dinner table this evening. One when mommy wouldn't let her shove the whole banana half in her mouth. The smallest things set her off and she gets so angry and just as quickly something she likes can turn that mood around again. She ate a good supper. We had BBQ's, fruit, and chips. We have learned that Gracie has a great love for potato chips.

After supper she had a bath with lots of splashing. I filled the tub a little fuller than I usually do and had to laugh as Gracie was trying to figure out why her legs were floating. It was neat that she realized something was different.

After her bath we played for a bit, then read some books, and it took her about 2 seconds to fall asleep.

Love,
Lisa, Jeff, and Gracie

Sunday - A Few of Her Favorite Things

Gracie had a great night and also had a great day. It was a day of favorite things:

• Gracie got to go for a couple of walks outside with mommy & daddy. She loves to play "stop" and "go" when we are walking. Today she unexpectedly announced "go"!
• Snuggling with mommy. Gracie took a 30 minute nap this morning and when she awoke was cranky. So I picked her up and we half sat up in bed snuggling. She fell back to sleep for another hour with mommy holding her.
• Piggyback rides with daddy. She got many of those today. She marches up to Jeff's back and climbs on.
• A wheelchair ride. Gracie loves going for strolls with her wheelchair. Many of the sidewalks are torn up on our regular route, so we have to "off road" on the bumpy lawns and grass. Gracie loves the thrill of the bumpy ride.
• Ketchup. Gracie ate a huge supper of a chicken patty-dipped in lots of ketchup. She also had tater tots with lots of ketchup. I do think she ate her veggies without ketchup though.
• Bananas, as long as mommy doesn't cut them up. Gracie loves bananas and loves it when she gets a whole half to eat by herself. Tonight her face lit up when I asked her if she wanted a banana while her supper was cooling. She was getting anxious as I was unpeeling it and said "nana".
• Walking mommy & daddy around the house. She loves to take mommy and daddy for walks around the house. She has to be holding both of our hands.
• Ring around the rosie. Introduced to Gracie by Auntie Sheila, Gracie has become quite the pro at this. She even falls down at the appropriate times.
• Rootbeer. Mom and Dad split a rootbeer at supper time. Gracie felt left out and insisted she get some too. Yummy!!!
• Gymbo. Gracie loves her VHS videotape of Gymbo going to the zoo. Great music and sometimes does some of the hand movements. Please don't let our VCR die.
• Helping mommy with laundry. Gracie opens and shuts the dryer door between handfuls of laundry that mommy is throwing in from the washer.
• Reading books. We read many of them today.
• Smiles. Gracie had lots of them today. :)

We have many more favorite things, but this about captures today's fun. Gracie is sleeping - she needs her rest for the week ahead.

Love,
Lisa, Jeff, and Gracie

Saturday - Lots of Playing

Gracie had a good night and awoke about 6:45 a.m. She was in a very good mood and ready for the day. We headed out about 9:00 a.m. for an hour drive to a park to meet another family that has a two year old with Sotos Syndrome. We arrived at 10:00 a.m. and no one was there yet, so we played on the swingset and slides. Gracie loved going down this bumpy slide all by herself. One of us would get her situated at the top and the other would catch her at the bottom. She would just giggle by the time she would get to the bottom. Then up she would go to do it again.

By 11:30 a.m. the other family hadn't shown up yet, so we sat under a tree and ate our picnic lunch and then played til about 12:00 noon. We figured they were a no show so we headed back home as Gracie was getting tired. Come to find out there are two parks with similar names and we were at opposite parks. Unfortunately, we never did connect.

After a nap, Gracie played outside with her water table. Jeff has installed a gate on our deck stairs, as well as mesh around the outside of the deck, so Gracie can be safely on the deck while I fill the water table with water and she is free to motor around the deck without me having to be two steps behind her. She found the freedom refreshing and was the happiest little girl.

We had strawberry soy smoothies for our afternoon snack. These have become a favorite for Gracie. They cool her down and are nutritious too...bonus!

After supper we put Gracie in her wheelchair and took a walk around the neighborhood. We even got to visit with mommy's friend Carol. Gracie decided to be shy and non-social for this visit.

After our walk, Gracie splashed around in the tub for a bit and then was more than ready for bed. She is in sweet dream land.

Love,
Lisa, Jeff, and Gracie

Friday - Hanging with Heidi

Gracie had a great night and awoke with smiles. Daddy got her out of bed, so there was none of our morning snuggles until later, then she was needing some mommy time, so we rocked for about 15 minutes before we headed out the door.

Gracie had a good day at daycare and when I went to pick her up, she was sitting on a big comfy chair and I was shown video of Heidi (the daycare dog) sitting right next to her and there was Gracie petting her. Of course, when I showed up, Heidi had to get down and come bark at me. :)

Gracie had a good evening. We had a less traumatic supper time than usual. I lured her in with a banana. She loves bananas and I don't give her them all too often because they sometimes make her constipated.

After supper we played on the computer for a short time and then it was bathtime as Gracie had squished mandarin oranges in her hair. I got the tub a little too full and oh my did the water fly when she was splashing.

After bath, I gave Gracie wild horsey rides on my back, then we read some books. It didn't take her long at all to fall asleep. She is sleeping peacefully. Night, night Gracie.

Love,
Lisa, Jeff, and Gracie

Thursday

Gracie had a good night and awoke all smiles this morning. We snuggled a bit before she got out of bed. I have a friend (you know who you are) that thinks the only reason I go back in bed to snuggle with Gracie is so I can get a few more winks of sleep.

Gracie read a book on the way to daycare about papa bear sleeping in baby bears bed and baby bear wanting to wake him up. The last page baby bear can be slid over to kiss papa bear and then papa bears eyes open. When I went to take Gracie out of her car seat, I found that baby bear had been pulled from the pages. Guess we'll be getting the tape out to repair that book.

I picked Gracie up around 4:30 p.m. and she was in a very good mood. We played outside for a short time and then came in the house to make supper. Supper time is becoming a very difficult meal as Gracie has big meltdowns. I know being tired just plays into this and she has a very hard time calming down. In talking with two other parents of children with Sotos Syndrome, they indicate they experience the same thing with their child. They have a hard time self-calming. I'm hoping the sensory integration work will be able to alleviate some of this.

Gracie had a great time in the tub after supper and then we read our bedtime books. Gracie fell asleep in about a half of a second.

Love,
Lisa, Jeff, and Gracie

Tuesday & Wednesday

I'll make up for no post last night and give you two days worth here. On Tuesday, Jeff picked Gracie up for OT and when I met them at the lobby waiting for the appointment, I thought Gracie seemed tired. When Kathy, the OT, came out to get Gracie she perked up, smiled and marched right over, took Kathy's hand and we marched back to one of the private exercise rooms. Less distractions work much better with Gracie for OT. OT seems harder for Gracie than PT. She tends to get frustrated easily when she can't get something or totally tunes out when something seems difficult for her. That said, she is making much progress. I talked with our OT about how we are dealing with mealtime tantrums and it was nice to have our technique for dealing with them be validated. The fact that Gracie's sensory integration testing showed she was hypo sensitive explains why she is cooperative through the day, but has a harder time with behavior in the evening. We are anxious to learn techniques to give her the input she needs throughout the day to even out the mood issues in the evening.

On the way home, Gracie rode with me, and I was just sure she would fall asleep. Ha! Instead she stuck her fingers down her throat the whole way home and continually vomited. She thought this was hilarious. Gracie and her car seat were covered in vomit. It was so gross. I took Gracie in the house to get her cleaned up and Jeff took pity on me and scrubbed the car seat. She was so tired that I let her take a nap from 5:30 - 6:30 p.m. That helped her mood immensely, but it also made her not tired when bedtime came around. She finally fell asleep for the night at a little after 10:00 p.m. She slept great! Probably the least restless I've seen her in weeks.

Today Gracie awoke in a good mood and had a good day at daycare. She got to go camping. Daycare set up a tent in the house and let the kids play. How fun is that???!!!! Gracie also got some zucchini bread for the first time and loved it. She's also been drinking out of a glass without the sippy cup on occasion. She does pretty good. When I arrived to pick her up, she was in a great mood.

It was just Gracie and I hanging out tonight as Jeff was performing magic at Hope Lodge. Gracie was a very good girl. We read lots of books, played with the telephone, and just hung out. Every night right before bedtime we read the same two books to her and she knows these are part of the nighttime ritual. We read "Night Night Prayers" and "Llama, Llama Red Pajamas". On the second and last page of the llama book reads "Llama llama red pajama gets two kisses from his mama, snuggles pillow soft and deep, Baby Llama goes to sleep." I always give Gracie's head a kiss when I read that. Well our smart little girl decided it is great fun to get away from mommy really quick so I can't kiss her. She thinks this is absolutely hilarious, as do I. Tonight she was really tired and she is snuggled in, leaning against me as I'm reading the book. I'm thinking she will fall asleep before the book is finished, but no, as soon as I start to read the end about the kisses, she does this huge flop away from me like a big fish jumping out of the water and then just giggles and giggles and giggles. These are the moments that make being a mommy so much fun.

Gracie is now fast asleep.

Love,
Lisa, Jeff, and Gracie

Too Tired to Update

Too tired - will type an update tomorrow.

Love,
Lisa, Jeff, and Gracie

Monday - Busy Day

Gracie had a good night and I had to wake her up this morning. She was sleeping so soundly and peacefully, I hated to disturb her. She was in a good mood this morning and enjoyed helping daddy eat his breakfast. The crazy kid loves drinking daddy's grapefruit juice. Go figure.

Gracie had a good day at daycare. When I went to pick her up she had just sat down for snack time. Barb suggested Gracie take hers with as we had a PT appointment. When Gracie heard this she shook her head "no". She wanted to eat with the other kids. I let her finish her rice krispie bar and drink a little juice but then we had to head out.

Gracie was very snuggly and wasn't sure she wanted to participate in PT. But Sandy coaxed her on to the big exercise ball and they sang and played "row, row, row, your boat". Suddenly smiles showed up!!!! Gracie said a few words for Sandy and showed her how to sign "horse". She also climbed up and down the steps with Sandy and she was impressed with Gracie's improvement. We still have a long way to go, but she is doing good.

After PT we ran to the clinic for an evening appointment to have Gracie's ears checked. No infection, so we aren't sure why she is always pulling at her ears and telling us they hurt. The doctor we saw suggested she might be getting some back teeth, but we can't see any signs of that.

Gracie was tired tonight. She didn't eat much for supper -- I think she was just too tired. So I gave her some milk and put her to bed. She was happy to lay her head on my shoulder. She fell asleep in about two seconds.

Love,
Lisa, Jeff, and Gracie

Sunday - A Good Day

Gracie had a good night and slept until 7:00 a.m. Then we all went to Jeff's church for Sunday service. Gracie did pretty good. She was content while the music was playing, but as soon as the message was being given, she was ready to depart. So Gracie and I hung out in the back of church for awhile. She was treated to a cookie and that made her smile big time.

After church we came home and took a walk down the street. She loves to walk the sidewalk holding both Jeff and my hand. She gets mad if one of us has to go in the house if she thinks it is family walk time. Then we put her down for a nap. She awoke, had some lunch and was ready to play. We filled her water table on the deck and dressed her in her swimsuit and she had a great time splashing. She has learned to put her face in the water and blow bubbles.

Gracie again told me that her ear hurt today. I may need to have those ears checked again. She had a burst of cognitive skills this weekend. She is signing and now also saying the words "baby" and "tree". She is responding to questions with head nods of "yes" and "no". Today I asked her where mommy's nose is and she pointed to her own. I'll take it...as we have been working with her to identify body parts for months with no success. Other than of course, my belly button, that she is just a little too intrigued with.

Gracie and mommy had a battle of wills at supper tonight. When Gracie didn't get her way, she took her plate of food and batted it to the floor with her hand in anger. Of course she was hungry but had no food. We calmly "talked" about what she had done and she was given another plate of food. Something didn't quite go right and the second plate joined the first. At this point she was in such a state of mind that nothing would have stayed on the table. She is very impatient when she wants to get down from the table, but her punishment was to stay strapped in her booster seat while mommy cleaned up and she couldn't get down until I was done. This was not met with happiness. And we had a pretty rough little while after that. Once we got through that, the night was good.

We played outside and Gracie was in a great mood outdoors, then we let her splash in the tub. Gracie and daddy played on the computer for awhile, then we read books and it was time to go to bed. It was a good day.

Love,
Lisa, Jeff, and Gracie

Saturday - Hanging with Mommy & Daddy

Gracie's cold is in full force with a constant drain from her nose. This continues to keep her awake at night. She awoke at 12:30 a.m. and was awake until about 2:00 a.m. However, once she fell asleep, she treated mom & dad by sleeping in til 8:00 a.m. We all needed that.

Gracie was in a pretty good mood today. You could tell she was feeling a little bit under the weather as she wanted to be held and rocked more today than usual, but she was pretty independent at times too. The best part of today is that both mommy and daddy were home with her and she got our undivided attention.

Gracie is becoming quite independent and is letting us know that she is a big girl. She no longer wants her food cut in bite size pieces, she wants the whole thing. For example, don't cut up the banana, she wants the whole half. She does pretty well with it, but has to be watched as sometimes the size of the bite she puts in her mouth is way too big. The smile on her face when she gets the banana half is priceless.

Gracie's ears have been bothering her, but we had them checked out and no infection. Today we were watching her Baby Signing Times DVD. One of the signs is "hurt" and they show you how to show which body part hurts. Today she came up to me while it was on and signed hurt by her ears. This was after I had noticed her pulling on them quite a bit. Needless to say, she got to have some Motrin to help with the pain. She also signs "baby" now. Also tonight when Jeff was taking off her shoes, she signed "shoes".

Gracie took a 45 minute nap at noon today and then a 2-1/2 hour nap at 4:00 p.m. This pushed bedtime back quite a bit, but we didn't mind. This just gave us more time to enjoy our little cherub tonight. She was in the best of moods. After supper we ran to JCPenneys for a short while and let her walk the store. She enjoyed that as is was really quiet there so she pretty much had the run of the aisles.

Gracie has her new orthotics and we started her wearing them today. I'm happy to say they fit her very nicely and she does very well in them.

Despite Gracie feeling a little under the weather, we all had a great day. She is now off to sleepy land and I'm hoping for a quiet night.

Love,
Lisa, Jeff, and Gracie Good Girl

Friday - A Nose That Wouldn't Stop Running

Gracie awoke at 12:30 a.m. with a nasty cold. She was restless and had a hard time breathing while she was laying down. I finally got her to fall asleep again at about 4:00 a.m. At this point she was sleeping pretty good, so I let her sleep in longer and went to work an hour later than usual.

Gracie's nose was a constant faucet today. Her poor little nose was so sore from having it wiped. Usually she fights me when I put Vaseline on it to keep it moist, but tonight I think she welcomed it. Jeff picked her up at daycare and although she had moments of happiness and some smiles for us, you could tell she just didn't feel great. She wanted to be held more and was a little more upset when she didn't get her way.

Daddy had to go back to work at 7:15 p.m., so Gracie and I snuggled in on her bed...and that is where daddy found us when he arrived home at 10:00 p.m. Sound asleep. Guess we both needed it.

Hopefully this cold will be shortlived for Gracie. It's nice that the weekend is here and we can give her extra TLC.

Love,
Lisa, Jeff, and Gracie

Thursday - All Sorts of Appointments

After Gracie's night terror she calmed down and slept quite good until 2:30 a.m., she awoke and continually pulled at her ears. I gave her some ibuprofen, a drink of water, and then we walked the floor for about 30 - 45 minutes. When I layed her down she fell back to sleep but every time I would take my hand off of her she would wake back up. She finally fell back into a good sleep about 3:30 - 4:00 a.m. Then she didn't want to wake up this morning...even though she got to sleep in later than usual.

Gracie's early intervention teacher and new occupational therapist from the Birth to Three program came to work with her today. Gracie loves her teacher Emily and had hugs and smiles for her. She even took her marching around the kitchen. She was a little more reserved with Michael the new OT. He was very good with her and let her come around at her own pace. Gracie worked on purposeful release into a bucket, we got a new book to work on for speech, she got to play some cymbals, although she wasn't too sure about those.

Gracie was a happy girl when I dropped her off at daycare. Daddy picked her up at 3:30 p.m. and took her to her appointment with the prosthetic lab. Her new orthotics came in so we had a fitting scheduled for them. If you've read previous posts, these are the ones that they made, but they weren't right for her foot, so we took her back, had them mold her feet and now we have her new ones. They look good, but we haven't had her really start wearing them. Since we have to monitor her feet every 15 minutes for the first couple of days she wears them, we'll start that on the weekend.

Gracie was a tired girl again tonight and got upset with daddy. I'm not even sure what for but she took a big pad of post-it notes and smashed them in his eye. When she gets in these moods, it's hard to remember she is mostly a sweetie pie. I'm finding that dealing with her in a calm manner is much more effective than raising my voice. The OT sensory specialist indicated that once we get her on a "sensory diet" throughout the day, these night outbursts should be reduced.

Gracie could hardly wait to get into the bathtub. As the water was running she started climbing in while fully dressed. She had a good splashing time.

Gracie has come down with an all out cold. Poor thing -- her nose is a faucet.

She is now sleeping very peacefully.

Love,
Lisa, Jeff, and Gracie

Wednesday -

Gracie had a good night with the exception of about an hour in the wee hours of the morning where she awoke and had a hard time going back to sleep. When it was time to get up, she really didn't want to this morning.

I dropped Gracie off at daycare and she was excited to go see Michelle, she ran around the corner then doubled back to see mommy again, lost her balance and fell on the ground taking another little girl with her. That made her very sad. So mommy had a little extra hugging to do.

Gracie had a good day at daycare and when daddy went to pick her up she was playing outside. Daddy and Gracie played outside for awhile when they got home. I got home later because I had a root canal and then stopped at the grocery store. By the time I walked in the house, Gracie was so anxious to see me, but I didn't get to her fast enough so she dropped to the floor in tears.

She was so tired tonight that everything seemed a little worse than it was. She did figure out how to make her cow flashlight moo. That was a huge triumph for her and she was very proud. She was asleep before 8:00 p.m. but was very restless. Then at 9:35 p.m. she had a night terror. We haven't seen one of those for awhile. Daddy is calming her down - she seems to respond better to him when she has these terrors. Not quite sure why, but she does.

Hopefully the rest of the night will be more peaceful.

Love,
Lisa, Jeff, and Gracie

Tuesday - A Much Better Day

Gracie had a good night and was sleeping so soundly this morning that I hated to wake her up to go to daycare. I eased her into the day by singing her awake and I even had time to snuggle a bit. This was rewarded by big smiles and a much happier girl. She was much more cooperative this morning than she had been all weekend and I could tell she was feeling much better.

As I was dressing her, I asked her if she wanted to go see Barb, Michelle, and her friends at daycare and she gave me a great big smile. I think she missed everyone. She had a good day at daycare and Jeff picked her up at snack time to head to the clinic for physical therapy. I met up with them at her appointment and she did a great job and worked hard. I love when Leslie (her PT) comes out to the lobby to get her. Gracie instantly smiles and goes to greet her, takes her hand and away they walk to the exercise room with mom and dad trailing. She looks like such a big girl. She was cooperative for most everything and is really coming a long way on her stairs climbing skills. We need to work on her hip strength over the next two weeks by getting her to pull up into a kneeling upright position to grab a toy or whatever.

Gracie got to see Auntie Sheila for a few seconds on the our way out of the ramp to go home. Auntie Sheila, Gracie apologizes for being so stone faced...she was rejuvenating from her workout. By the time we got home she was ready for some fun. We played outside briefly before supper. She walked up and down our sloped driveway by herself without holding onto a hand tonight. She was much more confident in her skills.

Gracie ate a good supper. She got to eat fresh nectarine chunks...this is her new favorite fruit. After supper we took her out for a walk/wheelchair ride and she was just crazy loving it. Her hands, feet, and mouth were going a mile a minute. After our wheelchair ride and a little horsing around outside once we got home, it was bath time. She was a wild girl in the tub and had a great time. We read a book, got her pj's on and then she was ready to go to bed. She played hard!

Love,
Lisa, Jeff, and Gracie

Monday - An Ear Infection???

Gracie woke up at 7:30 a.m. this morning. What a treat for me. She had a pretty good night with a few restless spells here and there. She awoke in a good mood, but was still a little more moody than usual. We gave her a bath after breakfast and she had a great time in the tub, but afterward, kept pulling her left ear and holding her head. We've been patient, but we were now on day 3 of a suspected ear infection, so I gave her some ibuprofen and we headed to Mayo Express Care. I was thrilled that they weren't all that busy. The nurse practitioner that saw us was great and we were shocked, yet thrilled to hear that she did not have an ear infection and even her throat looked good. Good thing I'm not a betting woman, because I would have put money on it that she had an infection.

We're finding that Gracie's behavior and tantrums were the most challenging this weekend that we've seen to date. I'm not sure to chalk this up to her being two or if this is the start of the behavioral issues that can affect children with Sotos Syndrome. We had a few time outs today where Gracie was removed from the situation and placed elsewhere until she could behave appropriately.

Gracie took an almost 2 hour nap and awoke in a very good mood. We did have a great afternoon. Gracie and I went to the mall while daddy mowed the lawn. Then all three of us played outside, took a walk, Gracie rode her tricycle and her coupe car. For afternoon snack I made soy blueberry smoothies. That was a huge hit. Gracie couldn't get enough and she looked so cute with her blueberry face.

Gracie was extremely challenging at supper time. She was furious and we're not quite sure why, so she threw her oranges across the room. She has quite an arm. This began a tantrum that got her removed from the table. When she was ready to start over, she was welcomed back to the table and supper went better after that. Other than she sneezed her applesauce with Topamax everywhere. There is NO WAY to capture all of the little med sprinkles...ahhhhhhhhhhh.

After supper Gracie was very tired, so we read some books, sang, and just hung out til we put her to bed at 8:00 p.m. It didn't take her long at all to fall asleep. Sweet dreams little one...even though a bit more challenging at times, it was wonderful to have a three day weekend with her. To snuggle, to laugh, to cuddle, and yes even to deal with unhappiness at times. It will be hard to go back to work tomorrow.

Love,
Lisa, Jeff, and Gracie