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

Sunday - A Rough Day

Gracie had a good night's sleep and awoke about 7:15 a.m. We all got ready to go to church, but it was soon evident that our little one was not having a good day. She was quite moody, nothing seemed to be right, she was extremely clingy, and it seemed she almost went out of her way to be naughty. So we sent Jeff to church solo and I stayed home with Grace. She did take a 45 minut nap and that helped for a short time.

Gracie's appetite seemed to be fine, no fever, but I do think her ear is still giving her problems. I notice she bites more when her ear is bothering her - both me and herself. Mommy kind of got beat up today -- biting, pulled hair, and the biggie is when she head butted me because she didn't want to get her clothes changed. The back of her head sent my tooth through my bottom lip. It is now big, swollen, and purple (my lip, not her head). I borrowed her "boo boo bunny" from the freezer for that one.

After we gave her some ibuprofen things started to improve a bit. She took a two hour nap this afternoon. The first hour by herself, then when I went to check on her she awoke so I snuggled with her and she slept another hour. She was in a much better mood this afternoon, but still a bit moody and clingy at times.

We did have some successes today. Gracie, Jeff, and I went for a walk in the neighborhood and when we got to her favorite apple tree, she signed "tree". She also signed baby when looking at pictures of babies.

Just before supper we put Gracie in her wheelchair and went for a nice walk. She was very happy for this and enjoyed it immensely.

We did a little more rocking today too, that is always a sign that Gracie isn't quite up to par. Tonight as I was putting my cherub to bed, I layed down beside her, she was just about asleep when she popped her head up, looked at me, and gave me a heart melting smile. I think it was her way of saying "I love you". It's amazing how one sweet smile can make everything okay.

Love,
Lisa, Jeff, and Gracie

Friday & Saturday

We're combining Friday and Saturday's note because we were just plain too tired to type last night. Gracie had a good day at daycare on Friday and was basking in the sun when I arrived to pick her up. We zoomed home, fed Gracie, and got her all dressed up in a pretty dress, as we had a wedding to attend. I had misgivings about taking Gracie to the wedding as she can get tired and cranky in the evenings, but we really wanted to go, so knowing she sometimes does better in social settings we decided to give it a try. She cried and screamed the whole way there. Once there she settled down a bit and it was evident she was very tired. Trying to reason with a tired child, just doesn't happen. We were able to see the bride and groom walk in and then we came to our parental senses and realized Gracie was not cooperating, was irritable, and the best thing for everyone would be to take her home and let her sleep. Once home it took her about two seconds to fall asleep.

Our plans for the weekend were to travel to see Jeff's Grandmother, but since Gracie and I have come down with sore throats, and Grandma has cancer, we didn't want to compromise her immune system, so we decided to stay home. Gracie awoke at 6:30 a.m. and was full of smiles. By 9:30 a.m. she was ready for a nap and slept two hours (it is evident that she is fighting something). She awoke in a good mood and ate a good lunch, then we went to my home away from home...Target. While I shopped, Jeff wheeled Gracie around the store in her wheelchair, which she found to be a good time. When they met up with me in an aisle, Gracie indicated she wanted something to hold, so I gave her a package of applesauce. A little while later she dropped it, I picked it up and she indicated that she wanted it back. A little later it dropped again, I picked it up and asked her if she wanted it or should I put it in the cart. She looked at me and said "mine". I didn't even know she knew that word. Earlier in the day she also was talking on one of our cordless telephones and was playing. She said "Hi Dad".

The other great development of the day was at lunch when she was able to stab a piece of nectarine with her fork all by herself and put it in her mouth. That got a round of applause from Mom & Dad.

After Target we hung outside for a while and visited with the neighbors and then it was quite apparent that Gracie was in need of a nap. This time she slept for an hour and 20 minutes. It took her awhile to truly wake up, we rocked for awhile after she got out of bed. Gracie ate a huge supper and then we just hung out. Bedtime came and went and Gracie wasn't able to fall asleep so we let her stay up later. At 10:00 p.m. we decided to give it a try again, but the suspicion that Gracie's ear might be bothering her was confirmed as she would roll her head from side to side and pull at her ear. We haven't seen this since she got her eartubes, a little under a year ago. We gave her some ibuprofen and after that it took a little while to settle down. She is now peacefully sleeping. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Thursday -- Nothing Too Exciting

Mommy D back at the blog. Gracie awoke at 1:00 a.m. and tried mightily to fall back asleep, but just couldn't do it. She thought it might be fun to play with her cow flashlight that moo's. Mommy didn't seem to think that was such a good idea. So instead I walked and bounced her and she finally fell asleep about 2:00 a.m. Then at 6:15 a.m. when she was supposed to wake up, she didn't think that was such a good idea.

Gracie had a good day at daycare. Daddy dropped her off and picked her up. On the way home from daycare Gracie shoved her fist in her mouth, gagged herself, and threw up in her car seat. We suspect she has a sore throat, that seems to be the only time she sticks her fingers in her throat. I also have a sore throat, so that would make sense. When I pulled in the driveway, daddy and Gracie were outside, but Gracie was looking mighty sad. We took her in the house and I rocked her for a good 10 minutes before she seemed to be ready to perk up a bit.

Gracie was quite clingy all night. We rubbed her with firm pressure on her back and arms like we were shown yesterday and that seemed to really calm her. She ate a big supper and even got some Halloween M&M's for dessert. I had a few on the table that I forgot to eat and later in the night Gracie discovered them and had a second treat. She thought it quite hilarious when I asked her if she was stealing mommy's M&M's.

We received a call today that Gracie's new orthotics have arrived. Now why couldn't this have happened yesterday when Jeff was off with her for the full day. Now I have to figure out when we can work in a fitting.

It took Gracie about two seconds to fall asleep tonight. She was one tired girl...and so is her mommy. So I'll say goodnight.

Love,
Lisa, Jeff, and Gracie

Sensory Wednesday

Hello, you are again being regaled by the awesome and wonderful dad (okay, enough with the self promotion). Grace had and appointment today, so I had the day off.

Overall we had a good day. Grace was quite snuggly, and we sat together and sang songs (plus a little TV - gotta love Sid the Science Kid) for most of the morning. Then a good lunch and down to the hospital for the appointment (rather than the Clinic itself).

Today's appointment was for Sensory Integration Testing - the short, uneducated version (ie - the Jeff version) is it is a test or evaluation to see how she processes information. We learned that our suspicions were correct in that Gracie is Hypo Sensitive - meaning that it takes more pressure or stimulus to get response from her. As an example - when you calm a child by rubbing their back, you have to press more firmly and apply more pressure to Grace to achieve the same calming effect. To do too lightly will either do nothing, or over stimulate her rather than calm her.

We did learn some techniques to help us to calm her down, avoid transitional issues, and so on. We will have another appointment in this area, and then this will become part of our Occupational Therapy program after that.

After the appointment, Grace was pretty tired. We came home and took a nap for about an hour and a half. After that, back outside to play and walk in the yard. The uneven surface and the hill really have done alot to strengthen her legs and improve confidence - so we get out there whenever we can.

After mommy got home we had a nice supper and then a fun time playing. Grace's new joke is to ignore Lisa when she is trying to get her attention. We were rolling a ball back and forth between Lisa and I, in order to pique Grace's interest in rolling and throwing - whenever Lisa would say, "Grace, do you want to roll the ball?" or "can you get the ball for mom?" Grace would turn her head the other way as if to not hear her. When Lisa would call louder, Grace would turn further away - and then finally giggle out loud. She was totally playing us!

Anyway - the jokester girl is in bed, sleeping soundly.

Lisa will probably be back at the keyboard again tomorrow - so thanks for putting up with me. Have a great night/day.

Thanks for your continued support.

Jeff, Lisa, and Gracie

Batch'n it on Tuesday

Okay - forgive the misspelling in the title, but if I'd have written, "Bach'n it" you all would've thought that I was composing music.

So - with that out of the way, Dad and Grace were home alone tonite. Mommy was speaking on a panel on the topic of adoption tonite. So - dad was left to feed the girl and change diapers, and get her off to bed. Well, mission accomplished, and no one is worse for wear - so I think we did alright.

After Grace's OT appointment today (which went pretty well) - Grace and I came home while Lisa went directly to her meeting. We had a good supper of chicken and pasta, and then got to watch a little TV. After that, Grace was pretty clingy, and wanted to be held the rest of the night. We sang quite a few songs, snuggled on the couch and headed off to bed about 7:30 or 7:45. Over all it was a short night, and Grace fell asleep about 2 minutes after we attempted to go to bed for real.

Sorry - I don't have alot of update to give. I will have more tomorrow, as we will have another appointment.

Off to bed I must go.

Bye for now.

Jeff, Lisa, and Gracie