Monday - A Great Physical Therapy Session

Gracie had a good night with the exception of a doozie of a night terror at about 12:30 a.m. Once we finally got her calmed down, she slept well. She was pretty drowsy when she woke up, but singing the banana boat song brought a smile to her face.

Gracie was a happy girl in the car and when we dropped her off at daycare. When I arrived at daycare to pick her up I didn't immediately see Gracie and as I was talking I felt someone hold my hand and there was my girl with a big smile on her face.

Gracie had a great physical therapy session. We worked on having her stand up from the floor and tried a new technique that we hadn't used before. It worked really well and Gracie was doing great with it. She was really engaged as Sandy was working with her and really paying attention. Sandy would put her in position and Gracie would do the work. She was so proud each time she did it, she would have a huge smile on her face and come over and give me a hug.

Gracie had a good supper and then we went out for a walk with her wheelchair. When we got back home, we took her out of the chair and let her walk the sidewalk. The neighbors had their sprinklers on and Gracie thought it was great fun to walk the sidewalk that was being sprayed and get wet. She was darn right mad when we took her away to go in the house for a bath.

After bath, Gracie was just plain tired and fell asleep in my arms drinking her evening bottle. Come to think of it daddy was sitting next to us and he fell asleep about the same time.

Love,
Lisa, Jeff, and Gracie

Sunday - Happy Happy Girl

Gracie had a good night and awoke in a good mood and that was the theme for most of the day. The exception is when we went to church. Since Jeff was leading worship at his church, Gracie and I were solo at my church. The trouble started when she decided she wanted to go visit the band. She was very insistent that I let her do this and I was very insistent that she stay in the pew with mom. This lead to verbal expressions of her frustration, as well as bodily force. After a few seconds we pretty much had the full congregation's attention, so I figured we should go out to the narthax and finish out mass from there.

Gracie took a nap when we got home and was in the best of moods when she woke up and ate lunch. She repeatedly said "daddy", she pointed to the kitten in the book and said "MeeeeeeOW", she did some beautiful purposeful release, she pulled pop beads apart, she sang, she laughed, she signed "more", and she meandered around the house and would periodically break into a dance.

After Jeff got home, all three of us went to Target. Jeff and Gracie wheeled around the store like maniac's in Gracie's wheelchair while I shopped. Gracie thought this was hysterical and everytime they would hit the aisle that I was in, she would very plainly say "Hi".

Tonight we went out to eat with Grandma and Grandpa D. Gracie was a good little eater, especially when it came to things covered in ketchup. French fries seemed to be the favorite. We ate outdoors, so after we were done, she tooled around and played and danced. Gracie had a late nap, so when we got home, she wasn't ready for bed. She was hilarious and playful. So we held off bedtime. I have a feeling morning will come way too early.

Have a good week.

Love,
Lisa, Jeff, and Gracie

Saturday - Fun with Family

Gracie had a great night and when she woke up, looked at me, said "Yay" and clapped her hands. I'm not sure if her cheer was because she had a great night or because she was happy it was morning. Gracie hung out with daddy this morning while I got my hair cut and the gray removed! Then it was daddy's turn for a cut so we exchanged Gracie at the salon and I headed home.

Gracie must be growing as she ate a big lunch. Then she took an hour nap to prepare for a visit from her Aunt Sheila and cousins Kayla and Jason. Gracie was happy to see them and they couldn't come up the stairs to see her fast enough. She played and played and had a great time. She even watched "Signing Times", one of her sign language dvd's with them.

Jeff and I have decided to step up the sign language with Gracie. We see her starting to catch on to a few signs and have decided we need to be better about consistently signing things. We don't like for Gracie to watch much TV, but have decided that we'll let her watch the sign language dvds with us a little more often, that way we can coach her. We also just bought the Signing Times for babies. She really likes that as well and signed both "mommy" and "daddy" today with prompting.

As Gracie gets older, she has definite wants but is getting increasingly frustrated that she can't tell us what those wants are. So we are hoping this helps alleviate some of the frustration, especially since we know speech is delayed and sometimes difficult for individuals with Sotos Syndrome.

When I put Gracie to bed tonight she was quite the comedian. She would lay down for a little bit, then she would pop her head up and shake it "no" and smile. I would then say "yes", and shake my head yes. She would lay down again and moments later her head would pop up again and she would shake it no. Again, I would say "yes" and shake my head yes. This got to be a game and everytime I would say "yes", she would giggle out loud. It was so funny, that I would laugh and that would make her giggle all the more.

She is now sleeping soundly. I'm hoping she has sweet dreams.

Love,
Lisa, Jeff, and Gracie

Tired Friday

Well, it's 9:05 on a Friday night and I am the only one that is still awake. This tells me 2 things:

#1 - Blog duty has fallen upon me (Jeff)
#2 - We really know how to party at our house!

Well, I have no idea what time Grace got up this morning, because I was out the door for work before she awoke. I can tell you that she didn't fuss much during the 5:00 - 6:00 a.m. time frame. She also slept soundly during my numerous checks on her and then hugging her before leaving for work.

Gracie had a good day at day-care today, and wasn't really too happy to see dad this afternoon because I arrived during the "Cookie Monster Song". Cookie Monster starts out with 10 cookies and then eats his way down to none - then he's sad, but someone brings more cookies, then he's happy . . . until he starts eating again. I think it's like "100 bottles of beer on the wall" for kids.

We got home and played for a while, and then mommy came home. As usual, Grace snaps to attention (no matter how tired she is) when she hears mommy's key hit the front door. She runs to the gate and screams until Lisa comes up the stairs and gives her a hug.

During the evening Grace would switch off between being dad's girl, to mom's girl, to nobody's girl, then back to dad and on and on. She finally ended up snuggling with both of us on the couch being everybody's girl.

Finally off to bed, where Lisa snuggled up to her, and then "accidentally" fell asleep.

Have yourselves a great weekend.

All the best,
Jeff, Lisa, and Gracie

Thursday - New Shoes

Gracie had a good night. When Jeff came to wake me up this morning she was snuggled close. When she woke up this morning she was a little grumpy grundy. It took her a little while to get over the grumpies, but when she did I was rewarded to a happy girl.

Gracie and I have this thing we do where I hold out my arms and ask her if she's hugged her mom today. She always comes and gives me the biggest tightest hug. I do this periodically throughout the day. Well this morning she is circling the kitchen island and I ask her this and hold out my arms. The little tease smiles and does a walk by and doesn't hug me. Now it has become a game. So over and over again, I ask for my hug and over and over again she smiles at me and walks as quickly by me as possible and giggles.

Gracie had a good day at daycare and got to go outside and enjoy the nice day. Jeff picked her up, then I met him at home and we headed to the shoe store. Gracie has outgrown her orthotics and she doesn't get measured for her new ones til late next week and then it will take a couple of weeks to get them. Her shoes are the size to accommodate the orthotics, but she has none that fit her now without the braces. So we needed shoes for her and badly. So we got her a nice pair of pink and white Stride Rites. It's amazing what a good fitting pair of shoes can do for her stability.

Gracie had a good night and was a happy girl, but was very ready for bed tonight. She fell asleep in less that two seconds.

Wishing you a good night.

Love,
Lisa, Jeff, and Gracie

Wednesday

Gracie had a somewhat restless night, tossing and turning. She awoke in a good mood and was ready to start the day. She ate a good breakfast and insisted on holding the box of cereal while she ate.

Gracie was a little reluctant to let me leave when I dropped her off at daycare, but she had a good day with her friends. Jeff picked her up and they played outside for a while, read books, and just hung out til I got home. Gracie was very intrigued with her belly button tonight. She kept having to check it out, over and over again. Unfortunately, her fingernails needed clipping, so now she has scratches on her tummy from her little exploration. Gracie was happy to see me when I got home and she snuggled in for a while. Then we read a book (twice) before we ate supper. She was very upset with me for not letting her hold onto a DVD case while she ate supper.

Jeff had a magic show at Hope Lodge tonight, so Gracie and I hung out. We went outside for a little while and worked on our "running". Then it was bathtime. Gracie wasn't as thrilled to be in the tub tonight. So we made it a quick bath and then went upstairs to play for a little while before bed. She was so tired, she fell right to sleep.

Love,
Lisa, Jeff, and Gracie

Tuesday - Physical Therapy

Gracie had a good night after a night terror early in the evening. She slept pretty peacefully the rest of the night and once again awoke while I was in the shower. I was treated to a big smile when I greeted her.

Gracie insisted upon taking her book "Raindrop Plop" in the car with her on the way to daycare, then insisted upon taking it with her to daycare. I'm not sure how long she carried it around today, I'll have to find out in the morning as Jeff didn't realize it was there, so it stayed there.

Jeff picked Gracie up for physical therapy at the clinic and she had a great session. She was happy, cooperative, and had some good successes. She got to go down the slide a couple of times and enjoyed that. One of the other physical therapists who hadn't seen Gracie in a while commented on how straight and upright she was walking. She has made great improvement in that area. Her leg muscles were well stretched, although her hips are still tight. We also got a prescription for new orthotics for her feet. She officially has outgrown her others and we are no longer using them as they cut into her feet. We'll need to get molded this time around.

Gracie had a good evening, but was very tired. I think the PT workout tired her out. She was in bed before 8 p.m.

Have a great evening.

Love,
Lisa, Jeff, and Gracie

Monday - She Thinks My Tractor's Sexy

Gracie had a great night last night. I'm happy to report that she did not have a night terror as I suspected. She awoke while I was in the shower so I'm not sure if she awoke in a happy mood, but she definitely had smiles for me when I came out of the bathroom. She wasn't real happy about getting dressed. I'm realizing she doesn't like transitions, such as changing out of her pajamas and getting dressed for the day.

Jeff had music on in the van on the way to daycare and the song "She Thinks My Tractor's Sexy" came on. Jeff was ready to skip over it when he looked in the back seat and Gracie had her hands in the air and a smile on her face, rockin out to the music. Gracie's cousin-in-law Jeff would be proud!!!!

Gracie had fun in the new kiddie pool at daycare. She loves water! When I went to pick her up she was playing on the deck, just happy to be outside and enjoying the day.

Gracie got her first time out at home today where she actually stayed where I put her. She has an obsession with opening the dishwasher door, even though she is well aware that is a "no-no". After about the fifth time, she was warned of a time out if she did it again. She did and she got a time out. I was shocked that she actually sat where I put her. She didn't touch the dishwasher for the rest of the night. We'll see what tomorrow brings.

Gracie had a ton of fun in the tub tonight, splashing away. As with most of her baths, the bathroom was pretty wet by the time we were done. She was a tired girl tonight. She fell asleep shortly before 8:00 p.m. and hasn't moved since I put her in bed.

Sweet dreams little one.

Love,
Lisa, Jeff, and Gracie

Sunday -- Too Much Fun For One Day

Gracie woke up at 5:40 a.m. this morning, but I coaxed her to stay in bed and snuggle til 6:30 a.m. Truthfully, she's a snuggler and it doesn't take much convincing. Our morning was rushed as we left at 10:00 a.m. for the Johnsburg Jamboree and 150th celebration. Just prior to our departure, Gracie tripped over daddy's foot and fell on the driveway. She mostly caught herself with her hands, but hit her nose and lip. She now has a fat lip and her nose bled everywhere.

Much like yesterday Gracie let us know that she did not need a morning nap, nor did she sleep in the car on the way there. So by the time we arrived, she was tired. We waited about an hour for the parade to start and Gracie really didn't enjoy it. She was tired and the sirens were too loud. So everytime they would run the sirens she would cry. I ended up walking away from the parade with her for awhile. She did enjoy the Llamas -probably didn't hurt that I started reciting her book "Llama, Llama, Red Pajama" that she likes so much. She became more hot and tired as the afternoon continued, but there was too much activity to fall asleep. Finally about 3 p.m. we put her in the van with a cold bottle of Gatorade and took her for a drive. She fell asleep immediately and slept for 40 minutes. That did her wonders.

After that we returned to the festival and visited. She still looked tired but had more pep. Gracie loved the polka music and danced with daddy for quite awhile while mommy was off visiting with friends and relatives she hadn't seen for a long time.

Gracie started to pep up a little when we stopped at my uncle's house for a bit and wanted to snuggle with Auntie Mary. Matter-of-fact when it was time to leave, she wanted to stay with Auntie Mary. Gracie was a good girl all the way home and was very happy to be home. Matter-of-fact, she was all smiles to roam the house in her jammies. It took her two seconds to fall asleep. I'm hoping that she doesn't have a night terror. We usually see those on days where she doesn't get enough sleep.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Gracie - Splashing in the Toilet

Gracie had a restless night, but slept in until 7:00 a.m. She actually awoke at 6:00 a.m., looked at me, smiled, and then dozed off. She did this on and off until 7:00 a.m. Gracie was in a GREAT mood today. She was a happy and very busy girl today.

Her morning bath was a hoot, she was a wild splashing girl. After that she stayed home and played with dad while I ran to Target. When I got home she was a busy little girl with all the packages. She wanted to help and carry and hold. She put away the elbow macaroni on her play table. I found the pasta dinner under a chair, the soup can was rolled under the counters, but she had fun and that is all that matters.

Today I got her lunch a little late and she was hungry. Her food was still a little hot, but she wanted it because she was hungry. I explained to her that it was too hot that we would have to blow it and she began blowing. This is huge as we have been working on blowing with her for a couple of months.

Gracie didn't take a morning nap, and only took a little over an hour nap this afternoon. Is my big girl starting to reduce nap time? After nap time, we took a walk to the neighborhood park and Gracie got to swing. She had a great time. Her little legs were just kicking and her smile was a big ear-to-ear smile.

When we got home I needed to check the laundry in the dryer. I left Gracie in the downstairs family room to play while I went just two rooms away to check the dryer. The clothes were still wet, so I restarted it and returned to the family room in less than a minute. Gracie was no where to be found. Then I heard splash, splash. I hadn't shut the bathroom door and there she was up to her elbows in the toilet having a grand time.

Gracie was very hungry at suppertime and after that we read books and then went outside for a leisurely walk. Gracie has officially outgrown her orthotics, so I put her in just tennis shoes today and I think she liked the freedom. On our walk she was actually running. She will be getting new ones, we are waiting for her PM&R physician to get back from vacation to order them. I think she will need her foot molded this time around.

Gracie was tired out and barely stayed awake until 8:00 a.m. I'm going to join her shortly.

Good night!

Love,
Lisa, Jeff, and Gracie

Friday - A Kiss for Mommy

Gracie had a restless night last night, and was not ready to get up this morning. I had a very hard time waking her up, she was just so tired. She was quite grumpy through the morning routine, but we did get a few smiles out of her.

Gracie had a good time playing outside in the water at daycare again today. Anything with water makes her a happy girl. I think she might be part flower, because with all that water, I think she grew today. She just looked taller today for some reason.

She was a hungry and thirsty girl tonight. She downed a glass and a half of Gatorade and a fruit and grain bar before we even started supper -- she just couldn't wait. After supper she played with her pop beads and is getting good with pulling them apart. After supper she leaned over to me and very gently kissed me on the chin. This wasn't a big wet slobbery kiss, this was a light sweet "I love you, mommy!" kiss. It melted my heart.

We had been invited to a "Welcome to baby, party" for some friends tonight and we both would have liked to go, but Gracie goes to bed quite early and we never know how tired she will be or how much she will tolerate when tired. I think our difficult decision to not attend was the best decision for Gracie today. With all the sun and fun, she was one tired girl. She fell asleep on my lap and is in bed sleeping peacefully.

We are ready for the weekend.

Love,
Lisa, Jeff, and Gracie

Thursday - Water Fun

Gracie had another great night. I woke up at 4:10 a.m. and realized I hadn't woken up all night. That rarely happens. About 6:00 a.m. I walked into Gracie's room to wake her up and there she was laying in bed, eyes open, contemplating her day. This is so unlike Gracie, usually the minute she wakes up she needs to let us know she is unhappy that we are not in the room. She saw me walk in, gave me a huge smile and that was the tone of the day. She was a happy girl.

When Jeff and I picked Gracie up from daycare she came out wearing an adult size T-shirt and she thought she was pretty cute!!!! She and her daycare friends got to play in big buckets of water on the deck and they had a blast. Gracie's clothes were soaked, just reiterating how much fun she had.

Gracie ate a good supper. I gave her a pink plate with Sleeping Beauty on it. She fell in love with this plate. She would look at it and smile and pick it up and smile. She was very upset when I took this plate away to be washed.

We went outside after supper and worked on running and climbing up and down grassy inclines. Gracie is making remarkable improvements in her balance and confidence. We even played ball for awhile, but Gracie thought eating the ball would be more fun than throwing it.

Gracie was one tired girl, but started out very restless in her sleep. Perhaps she was too tired from all the fun and fresh air. It was a good day.

Love,
Lisa, Jeff, and Gracie

Wednesday - Blowing Raspberries

Gracie had a good night again -- I'm sounding like a broken record and I'm liking this. She wasn't quite ready to get up this morning, but once again I sang the banana boat song to wake her up. She rolled over and looked up at me with sleepy eyes and a big smile.

When we arrived at daycare there was a big yellow bus parked outside, Gracie was fascinated by this bus. I think she could have sat and looked at it for an hour. She had a big smile on her face. This is a good sign since she'll be riding a bus to school in about a year.

Gracie had a good day, daddy picked her up from daycare and when I walked in the house she had a HUGE smile on her face and I think she and daddy had been dancing. Hollow leg girl showed up for supper. She ate and ate and ate. We took a little time after supper to play, but then it was bath time. She had a blast in the tub. She splashed and splashed until we were all soaked.

I took her into her room after bath and was putting lotion on her legs and she kept trying to lick one of her legs. So I start trying to discourage this. Then she locks her lips on her leg and does the biggest loudest raspberry I have ever heard in my life. It was hilarious. I, of course, laugh hysterically which makes her deep belly laugh. Since I found this so funny, I was treated to a number of these.

Gracie had an easy time falling asleep. I think her splashing action in the tub wore her out. The cooler weather probably helps too.

Have a great night.

Love,
Lisa, Jeff, and Gracie

Tuesday - A Good Day at OT

Gracie had another good night and awoke in a good mood. Of course mommy snuggled with her for a few minutes before she got out of bed, thus insuring that she would be in a good mood.

I dropped her off at daycare and she wasn't sure she wanted me to leave, but I gave her an extra hug and soon she was snuggling with Michelle. When Jeff picked her up she was snacking on Cheerios and getting her energy up for occupational therapy.

Gracie had a really good occupational therapy session today. Kathy, her OT, was very proud of the progress she is making with "on" and "off". She did some good purposeful release, and even did a little coloring on the whiteboard. We will continue to work on having Gracie help us to dress her and remove her own clothing. We also need to work on pulling things apart. I need to find some pop beads. If anyone knows where I might find some, please let me know.

Gracie ate a good supper, then we played, listened to music, and danced. Gracie had a very hard time falling asleep. I'm hoping that she has a restful night.

Love,
Lisa, Jeff, and Gracie

Monday - PT/OT/ECSE

Gracie had a good night and daddy had to sing her awake this morning. Singing to her to wake her up works like a charm and is guaranteed to put her in a good mood.

Jeff dropped her off at daycare and she was in a great mood. I picked her up at 3:30 p.m. and we headed home. Gracie's physical therapist, early education teacher, and occupational therapist (new to us through the Birth to Three program) came to work with Gracie at 4:00 p.m. Gracie signed "ball" and when read a story about "up", would put her hands up. Gracie's PT confirmed that Gracie needs new orthotics for her feet, she has outgrown hers. She has only had them three months. Most kids never outgrow them. But then our Gracie is on a growth scale all her own. Gracie's occupational therapist gave us some things to work on to teach Gracie to blow. The thought is that if we teach her to have more control of her mouth, she will also have more control over her drooling.

We had taco's for supper. I thought Gracie might enjoy them, but I was wrong. The meat was too spicy for her and she promptly decided that was not her thing. What was I thinking?

After supper we went for a walk and Gracie sang pretty much the whole time. She was in a great mood. After supper it was bath time and she enjoyed splashing and screaming.

She was one tired girl and quickly fell asleep. She was very much daddy's girl today.

Love,
Lisa, Jeff, and Gracie

4th of July Weekend - Happy, Social Girl

Gracie had a great Fourth of July weekend. She had great nights (other than a night terror on Saturday night) and awoke in great moods. I can tell that she is more at ease now that Jeff is home. She is still a little clingy at times, but slowly that is getting better too.

We had quite the social weekend. On Saturday we went to Aunt Sheila and Uncle Chris' house to celebrate the 4th with family. Gracie loved spending time with her cousins and some of her aunts and uncles. She also enjoyed their yellow lab. She was a good girl all day long and had fun playing with everyone. She had her music therapy on Aunt Sheila's piano too. The weather wasn't great, but that didn't stop us from having fun.

Today Grandma & Grandpa D., and Aunt Kathy came over for lunch and to hang out for the day. Gracie enjoyed the company and got to play outside with her water table. Grandpa helped daddy carry Gracie's new mattress up to her room. Gracie was super excited with her new bed tonight. It's higher than her old one, so she has to re-learn crawling off and on. She almost had a face plant tonight, so now we have pillows around the outside until she gets used to it.

We played outside today and Gracie's confidence with walking in the grass is really improving. Tonight she walked across half of the backyard to the fence to watch the neighbors sprinklers. She did this a number of times and does really well.

Tonight Gracie was drinking her night bottle while sitting on my lap, Jeff sat down on the couch by us, closed his eyes and pretended to snore. Gracie thought this was hilarious and would giggle. So tonight I am walking with her and singing her to sleep. She is resting her head on my shoulder and is nice and calm...and then she started pretending to snore. Oh my gosh, I could barely hold the laughter in. What a little card.

She is now snoozing on her new mattress. I hope she thinks it is comfy.

Have a good week.

Love,
Lisa, Jeff, and Gracie

Friday - Daddy's Home!!!

Gracie had a great night and awoke at 6:30 a.m. Gracie was in a snuggling mood, so we stayed in bed and laughed and snuggled til about 7:00 a.m. Gracie was in a fantastic mood. We got up and had breakfast together and we talked. I had actual words and she jabbered on and on -- I'm sure she knew what she was saying.

After breakfast we played and read books. Or should I say, we read A book, just over and over and over again. Gracie selects one toy or book and that is the key toy or book for the day. Today it was her "Wake Up Papa Bear" book. It went everywhere with her. Including our trip to the butcher shop to pick up some meat. Usually I can talk her into leaving said toy in the car...not today. However, when the nice lady offered her an M&M cookie, it was okay to let go of the book.

Gracie took a 45 minute morning nap and that was just what she needed to be in a great mood again. She was still very clingy, but happy. She ate a great lunch, from the amount of food she put away I am just sure she has a hollow leg. We are working on biting and pulling when we eat items like cookies, etc. This is teaching her how to bite portions off of a larger item, such as a cookie or toast. Gracie has had a hard time with that, so puts way too big of chunks in her mouth. So we are working with her on that so that her food doesn't have to always be cut in bite size pieces. Drinking out of a straw has not been intuitive for Gracie either, but we are working on that and I think she got it today.

About 2:15 p.m. we headed to the airport to pick up daddy. I was scared she would give him the cold shoulder as the last day any time I would mention him or show her a picture, she wanted nothing to do with him. She fell asleep in the van on the way there and since we were a little early, I let her sleep for about 20 minutes and then woke her to go inside. Jeff had just come off the plane as we entered. Gracie gave him a smile, held out her hands and snuggled in!!! I don't think she let go of daddy for a good hour afterward. On the way home, Jeff sat in the back with her and she smiled and jabbered and giggled and held daddy's hand the whole way home. I could tell that daddy was happy to see his girl too!

As we were out of everything at home, I left daddy and Gracie to play and I went to the grocery store. They laughed and danced and sang while I was gone. Since Gracie's afternoon nap was only 20 minutes...rather than the normal 2 hours, she went to bed early. She was overtired and had a harder time falling asleep.

I can tell Gracie was most content and happy when all three of us were home together. All was right in her world.

Have a safe and fun Fourth of July.

Love,
Lisa, Jeff, and Gracie

Thursday -- Still No Daddy

Gracie had a great night last night and of course that means I did too! :) Gracie awoke in the greatest mood this morning. She was happy and snuggly -- two of my favorite things. I asked her if she wanted breakfast and she shook her head "no" and smiled, but was only too happy to eat some.

Gracie had a good day at daycare but was very quiet and mellow all the way home and through the evening. She had been so excited earlier in the day that daddy was supposed to come home today. Unfortunately, due to travel problems, he is stuck in Amsterdam and won't get home til late tomorrow afternoon.

Gracie is becoming quite the pro with feeding herself with a toddler fork...she can't load it herself, but if I give it to her loaded or help her load it, she hits the bullseye (her mouth) every time. Sorry daddy, but I think she is gonna be a righty!

Tonight Gracie and I were reading her book "Llama Llama Red Pajama" and at the end the baby llama goes to sleep. Every time I read it to her and we get to the end, she smiles and shakes her head no. I think she thinks that means it is time for her to go to bed.

Gracie is peacefully sleeping. I'm hoping for another good night.

Love,
Lisa, Jeff, and Gracie

Wednesday - A Good Day

Gracie had a great night last night. She had a very short bout with restlessness and tossing and turning and fussing. She didn't awaken through this and slept in just long enough to allow me a shower. She awoke in a great mood and was even quite silly this morning.

Gracie's clinginess with Jeff being away continued today. I actually think it is getting worse instead of better. It makes it a little difficult to go to the bathroom, but otherwise I don't mind. I did cheat for dinner tonight though, as it makes it hard to cook when she wants to be held constantly. I picked up pasta with marinara sauce and breadsticks. Then I supplemented with fruit at home. I figured the veggie could be the tomatoes in the marinara. This was a big hit with Gracie, my pasta lover.

Tonight at dinner Gracie and I are interacting and I am talking to her. I said "Gracie, did you know that daddy is coming home tomorrow? We are going to the airport to pick him up and bring him home." Not only did she smile at this, but she started giggling. There is no question that she misses her daddy.

The night flew by. After dinner it was bath time and the splashing was at an all time high. After that we put our jammies on and read a book. We had lost a favorite book of Gracie's "Llama Llama Red Pajama" for a couple of days and we found it under the couch tonight. So, that was the book I got to read numerous times this evening. She got a stuffed llama at Lark Toys this weekend, so he got to sit beside her while we read.

Gracie fell asleep quickly this evening and is very peaceful. I'm hoping that continues through the night. Well "the girls" made it through the week without daddy, but we'll be very happy to have him home again.

Love,
Lisa, Jeff, and Gracie

Tuesday - Physical Therapy

Gracie had a much better night, but did awake at 1:00 a.m. for an hour. She wanted to sleep, but just couldn't get back to sleep. Once again, I had a hard time waking her this morning. She was in great mood once she finally awoke.

I'm finding that with each day that Jeff is gone, Gracie becomes more and more clingy. She wants to be held, or sit on my lap, or be right by my side constantly. I can't walk out of the room without her busting into tears. I went downstairs to put a load of laundry in and she screamed and cried at the gate at the top of the steps. Her face was wet with big crocodile tears. I keep telling her that mommy will always come back and that daddy is coming back in just two days, but I think she can't quite grasp that.

Gracie had a good day at daycare and had some great successes at her physical therapy appointment at the clinic today. We had less tantrums regarding the little sink that she constantly wants to play with. She kicked a ball, she climbed the stairs to the slide with very little assistance, she almost stood up from the floor on her own, it was soooooooooo close. One of the therapists (not one that works with Gracie, but who we see and say hello to) hadn't seen Gracie for a number of weeks and couldn't get over how good she was doing and how much improvement she is making. Leslie, our PT, asked me if Gracie has made any attempts at wheeling herself in her wheelchair. No sooner had the word "no" come out of my mouth, when Gracie, who was sitting in her wheelchair, started to push herself along with one hand.

We had a good evening of reading books and playing. Gracie was very tired and fell right to sleep. She seems to be very peaceful at the moment.

Love,
Lisa, Jeff, and Gracie

Monday - Stretch Those Orthotics

It was a rough night. After Gracie's night terror at around 10 p.m., she was extremely restless. She awoke at 1:00 a.m. and couldn't be consoled. I walked the floor bouncing her for about 45 minutes before I finally got her calmed down and back to sleep. At 4:00 a.m., she awoke crying again and was terribly restless. I finally got her back to sleep and then it was time for me to get up. By the time she was supposed to wake up, she was sleeping so tight and peacefully that I had a really hard time waking her up. Go figure.

Gracie was very clingy this morning and just wanted to be held. Smiles were a little harder to come by. Our first order of business was to stop at the prosthetic lab and have them look at her orthotics (foot braces) as they both were cutting into her foot. They were able to melt them a little and stretch them. That should do the trick for a bit, the next step is to cut them down a bit and if that doesn't work, they'll have to make a new pair. At $1400 a pair, I'm hoping we can hold off for awhile. I thank God that we have good insurance.

Gracie had a good day at daycare. I arrived to find Gracie in front of the large screen TV dancing out to "Islands in the Stream" by Dolly Parton. She was really rocking out, clapping hands and swaying. I snuck in and just watched for a while. What a stitch.

Daycare has been working with Gracie not to suck her thumb during the day. Today she succeeded all day and they were telling me this tonight, when Gracie's thumb started heading to her mouth. Michelle said "Gracie" and the thumb stopped midair. The little goofball.

Gracie had a good supper, a quick bath, and she was ready for bed. One tired girl! That goes for me too...I'm headed to bed shortly.

Love,
Lisa, Jeff, and Gracie

Sunday Fun Day!

Gracie had a pretty good night last night, but awoke at 5:00 a.m. She snuggled with me for about an hour before insisting it was time to get out of bed. That is the one thing I can count on with her, snuggle time in the morning when she wakes up. She loves it as much as I do.

Gracie was ready for a nap by 8:30 a.m., which gave me time to take a shower that was more than 2 minutes long. Ahhhhhhhh, that felt good.

Gracie was full of mischief around the house, but good naturedly so. At one point I was blow drying my hair and Gracie walks by with a DVD in her hand...the very DVD that was in the DVD player. She figured out how to open it up and take it out. She was quite proud and then disgusted as I took it away.

This afternoon we met up with my sister and nephew and went to Lark Toys for the day. Gracie refused to stay on one of the animals on the big Merry-Go-Round, but she did sit on my lap on a bench that goes around and around too. We had lots of fun roaming the toy and book stores. Gracie got a llama and then my sister found this doll that looks exactly like Gracie - it's hair, it's coloring - she showed it to Gracie and she screamed in delight. She carried that baby around and it was hilarious to watch her react to it. Gracie got an early birthday present -- thank you Auntie Sheila.

While my nephew and I played mini-golf, my sister took Gracie for a spin in her wheelchair. Gracie was so tired she fell asleep with her head on the tray. Once she woke up, we picked up some food and headed back to my sister's house to eat it. Gracie was in heaven. Cousin Jason treats her like she is a princess and she loves to play with him. She even got to play the piano.

She cried the whole way home and fell asleep about 2 miles from home. I put her into bed where she was peacefully sleeping until she had a night terror. I should have predicted it -- when she doesn't get a good nap, we tend to see those.

It was a very fun day -- just what Gracie and I both needed.

Love,
Lisa, Jeff, and Gracie

Saturday - A Day At Home

Gracie woke up at 6:00 a.m., I think she must have forgotten it was Saturday. She had a much better night than she has had the last couple of nights. I was shocked to look at her and find she had blood crusted all over her face, then I looked at the bed and it, pillows, and blankets all had blood on them. Gracie had a bloody nose in the night. She does tend to have a dry nose and with all the air conditioning, I'm guessing it made it even drier, even though I always keep a humidifier running in her room.

Gracie was a very happy girl for most of the day. Lots of jabbering, lots of smiles. We read lots of books, played with toys, listened to music and worked on some of our OT and PT lessons. Gracie had a bath this morning and she enjoyed that, but not very much splashing today, I think she misses daddy splashing her back. They have splash wars. Although very happy, Gracie was very clingy today and wanted to be held alot. I think she misses Jeff and her level of security is just thrown off a little. I was happy to give her lots of snuggles.

After Gracie's bath it was time for my shower. Once again I gated her in the hallway right by the bathroom so she could see in, but not come in as she has a love of the toilet. She had toys and books, but unfortunately it was very traumatic. She screamed at the top of her lungs for my whole shower. Once again I speed showered.

Gracie took a 45 minute morning nap, had a good lunch and then we were going to go to Target. Just before we were ready to leave, her nose started gushing blood again. It was everywhere. On our rocking chair in the living room, all over the kitchen floor, all over Gracie's clothes, all over my clothes and I couldn't get it to stop. I finally just put her in the bathtub. Once we got it stopped I called the nurses line to find out what they recommend should it happen again.

Gracie took a 3 hour afternoon nap and awoke in the best mood ever. She was just silly happy. She was jabbering and found mommy hilarious. Gracie even sat on the floor and played by herself with books and toys for 10 minutes straight while I was on the phone. This is HUGE. Children with Sotos Syndrome have a VERY short attention span.

Gracie doesn't talk much, she has about 6 or 7 words and "hi" is one of those words. She always says it in a very high pitched, yet soft sing songy voice. If you don't know what she is saying you sometimes miss it. Today after her nap we were eating a snack at the table and she looked up at me with a big smile and said "HI" in the biggest boldest voice. I had to look twice to make sure it was my little girl at the table.

Gracie and I went for a walk this evening and then played outside for awhile. She drove her little car. She can go backwards very well. We don't quite have the concept of going frontward, but I work on it with her a little bit each time we are out. We also worked on walking on the grass, she is doing great with that skill.

By the time we came in, Gracie was very tired and fell asleep very quickly. Needless to say, I'm not too far behind her.

Have a great rest of your weekend.

Love,
Lisa, Jeff, and Gracie

Friday - Our First Day Without Daddy

Gracie had a terribly restless night, she tossed and turned constantly. At 4:30 a.m. she awoke for the day. She was happy to still snuggle, but she was NOT going back to sleep. This posed a bit of a problem for shower time for me. So I corralled her with gates just outside the bathroom and showered while she played and read books. She did get a bit impatient with me toward the end. It was the fastest shower I've taken in years!

I dropped Gracie off at daycare and she was in a good mood. We sang the whole way there with Gracie adding claps here and there. When I picked her up, she was still in a good mood and remained that way pretty much all night. She was more clingy tonight, but I was happy to hold her and give her attention. Tonight we read books and played on the floor.

I gave her a hug from daddy and I told her that's who it was from. She got a big smile. I think she is missing her games of chase with daddy. Mommy can attempt it, but it's just not the same as when her and daddy play.

We've been working on the concept of "on" and "off" in Occupational Therapy. One of the things we are trying to get her to do is help dress and undress herself. Usually she fusses about this, but tonight she cooperated and pulled her shirt "off" of her head and then pulled her jammies "on" over her head. I got a big proud smile when I cheered her success.

Gracie fell asleep quite quickly this evening. I'm hoping we have a better night.

Have a great weekend everyone.

Love,
Lisa, Jeff, and Gracie

Thursday - On the Go!

Gracie had a much better night - very peaceful for all except perhaps a half hour. She awoke about 6:15 a.m. and was in a great mood. She ate very little for breakfast, but as always did eat all of her fruit.

At 7:45 a.m. Emily, Gracie's Early Intervention teacher came over to go through Gracie's plan for the next year. Gracie was very happy to see Emily and had lots of smiles for her. After Emily left we had some milk, finished up a few things around the house and headed to the mall to buy daddy a new suitcase on wheels. We also bought Gracie some shorts and shirts, and mommy got some new sandals.

After the mall we headed to Culvers for an early lunch. French fries with LOTS of ketchup are Gracie's favorite there. The bun was good too. Her hamburger didn't really get too much attention. She also got lemonade. From there we headed to the airport to drop daddy off for his trip to Budapest, Hungary. I was surprised to find out that we could accompany him to the departure gate. We had to practically disrobe to make this happen. We even had to take off Gracie's shoes and braces, but the people helping us were extremely kind.

When we got to the departure gate, the whole floor was vacant, so Gracie had a hoot running up and down the rows of seats in a big open space. A little later other people trickled in. There was a 3 year old girl that Gracie wanted to play with in the worst way, but this little girl was very tired and wanted NOTHING to do with Gracie. We gave daddy lots of hugs and kisses and then headed home for a nap.

Gracie took a two hour nap and then we headed to Julie and Chris' house (friends) for a playdate with their three children. Gracie was treated like a princess. Katelyn and John shared all of their fun toys with her. It was no surprise that the ones that made music were her favorites. Julie and Chris also have a big fish aquarium -- Gracie loved that too.

About 90 minutes into our playdate, Gracie became very fussy and nothing seemed to make her happy. So we headed home. She fell asleep on the way home and then had quite the messy diaper - so I think I found out why she wasn't so happy. After that she was in a great mood again. She was full of mischief all night and she knew it. She loves to give me a big smile when she is going for something she knows she isn't supposed to touch -- like the wastebasket.

Gracie ate a pretty good supper -- I made sure we had veggies and fruit incorporated in it, since french fries were her main staple for lunch. After supper we played and read books. We also had on CNN where they were playing Michael Jackson music. It was no surprise to me that she loves his music -- daddy would be so proud.

Gracie had an absence seizure this afternoon. We hadn't seen one of those for awhile, but she was quite tired and worn out, which is when I tend to see more of them.

Gracie was pretty tired tonight and fell asleep sitting on my lap. I snuggled with her for awhile and then put her into bed. I don't think she has moved since.

Love,
Lisa, Jeff, and Gracie

Wednesday

Gracie had a terribly restless night, she tossed and turned all night long. She was in constant motion and would scream and cry out, all while still sleeping. Needless to say, morning came way too early. When it was time for Gracie to get up, she was sleeping so peacefully and deeply. I had a really hard time waking her up.

Gracie was in a good mood this morning and even had some good smiles for me. I took her to daycare and she was a little sad when I started to leave, but I gave her another hug and we blew kisses and then she was okay.

Jeff picked Gracie up from daycare and they worked on purposeful release and played. I ended up working a little late and when I got home she was a sober cheeks. She ate a pretty good supper and then we gave her a much needed bath -- we missed bath night last night. She wasn't really into splashing tonight either and was ready to come out of the tub fairly quickly. She had a fit when I tried to put on her pajamas, so I let her run around in her diaper for a bit.

It took Gracie about 2 seconds to fall asleep tonight. She was so tired. I'm going to go join her in sweet dream land.

Love,
Lisa, Jeff, and Gracie

Tuesday - A Very Busy Day

Gracie had a very good night and awoke fever free and ready to start the day. She was a little grumpy upon waking but snapped out of it fairly quickly.

Gracie went back to daycare today and when I dropped her off she was happy to snuggle with Michelle and got to see Papa Norm too. She had a good day and Jeff picked her up at 3:30 p.m. and was back at the clinic at 4:00 p.m. for her occupational therapy appointment. Gracie was very unhappy at the start of her appointment, but warmed up as the hour went on. We worked on "on" and "off" -- whether that be her clothes, necklaces, or balls suction cupped to the mirror. We also worked on biting and pulling of food and chewing with her "puppy dog" teeth (molars). Gracie also used markers on the dry erase easel and then got to wash her hands in the little sink -- the highlight of her day. At the end she got to go down the big slide.

From OT we met up with Grandma and Grandpa D. We went out to dinner with them and then back to their RV to visit for a bit. Gracie loves watching their 3 cats.

It was way past Gracie's bedtime when we got home and she was overtired...to the point that she was so restless and couldn't wind down. She finally fell asleep at around 10:00 p.m. I have a feeling morning is going to come too soon.

Bed is calling me as well. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Monday With Mom

Gracie had a very rough night. Her fever spiked to 103 and Motrin nor Tylenol seemed to help it. I walked and bounced with Gracie from 11:00 p.m. to 1:00 a.m. At that point her fever went down to 100 and she was able to sleep. This morning Gracie's fever finally broke. I stayed home from work to care for her. She was more tired and clingy today, but overall in a good mood. She was also into a lot of mischief and tested her limits quite a bit.

Some of our fun for today consisted of an angel food cake pulled from the cupboard out of the container that landed on the floor, a glass of water spilled on the couch, our lunch plate thrown on the floor with food on it, the DVD player pulled from it's shelf that almost landed on the floor, and a fall in the basket of laundry when we thought it would be fun to walk around the house with our blanket over our head.

Gracie's appetite was not as good as usual. She took in plenty of fluids thankfully. Gracie was happy to see daddy come home from work and followed him everywhere for about 15 minutes. There, of course, were a couple of good games of "I'm gonna get you!"

Gracie's fever returned at 100 degrees around supper time. Tylenol has it under control now. I'm hoping it doesn't return. Gracie had a really hard time falling asleep tonight. It's just too warm in the house and the air conditioning has been going full blast all day.

Stay cool.

Love,
Lisa, Jeff, and Gracie

The Weekend

Our weekend started out great, but closes with illness. On Saturday we went to Gracie's cousin's daughter's graduation (my nephew's daughter) about 2 hours away. Gracie was in a great mood and was happy to pick up another cousin on the way to enjoy the ride. I was hoping Gracie would take the opportunity to snooze for some of the two hour drive, but unfortunately that was not the case.

It was fun to see everyone and Gracie enjoyed the swingset, seeing the dogs, and playing with lots of kids. It was a hot day and with Gracie's seizure meds, she is much more sensitive to the sun and she doesn't sweat appropriately, so we had to keep our eye on her. She did take a pretty nasty spill when she forgot to step up to enter the garage, she fell right on the cement with her forehead. She has a pretty nasty bump that is turning purplish blue on her forehead. She was a pretty tired girl, but there was way too much to see to take a rest or nap.

She did fall asleep off and on throughout the ride home. She awoke when we got home, we put her jammies on and it didn't take her long to fall asleep again. She awoke at 2:30 a.m. this morning and was burning up with fever. We've been struggling to manage it all day long and can't quite break it. I just put her down to sleep and she was still running at over 102. She doesn't seem to have any other symptoms that I can tell so I'm not sure what is going on. She was in a fairly good mood today, but didn't have much energy at times. We read ALOT of books today, sang lots of songs, and did some good snuggling. I'm hoping the fever breaks soon.

Wishing all of you Fathers out there a very Happy Father's Day and to everyone...Happy Summer!

Love,
Lisa, Jeff, and Gracie

Friday - Some Outdoor Time

Gracie had a horribly restless night, she tossed and turned constantly for a couple of hours and kept crying out and kicking like when she is mad that she doesn't get her way. I'm not sure if she was having bad dreams or what. Her schedule was way off yesterday with her echo and I think that may have been to blame. She even had an absence seizure yesterday afternoon and we haven't seen one of those in a while.

Gracie woke up in a grumpy mood this morning and needed a little while to snap out of it, but when she did she was a very happy girl. She was a great tease at breakfast. She has outgrown her highchair so we moved her to a booster seat up to the table. She thinks she is quite the big girl. I think she looks like a big girl too.

Gracie had a good day at daycare and even got to play outside. Daddy picked her up and when they got home she played outside some more and did some visiting in the neighborhood. I stopped at the grocery store on my home from work, so by the time I came home Gracie was eating supper and was very anxious to see me.

We spent a little time playing tonight, but bedtime came too early for my liking. Gracie is snug as a bug in her bed. I'm hoping for a more peaceful night.

Love,
Lisa, Jeff, and Gracie

Thursday - A Day for Good News

Gracie had a good night that ended all too soon for her liking. We had to get her up at 5:00 a.m. to take her epilepsy meds as she needed to be fasting for her echocardiogram today in case they needed to sedate her. So not only did we get her up too early, but she couldn't eat either. I was quite impressed, she did quite well.

We ended up not having to sedate her for the echo since she was quite tired and layed pretty still with me holding her hand, that is until the end, she let out quite the cry. We were thrilled that we didn't need to go the sedation route. Since this was a follow up echo, they were rechecking her mitral aortic and tricuspid valves, both of which are mildly thickened, and she also has a small PDA (patent ductus arteriosus). We got good news that there have been no changes in the last 6 months. We don't need to have another echo for a year. YAY!!! The nurse, the technician, and her pediatric cardiologist are top notch!!

After our appointment we went to the patient cafeteria to have some breakfast (at 10:30 a.m.) and Grace was waving at somebody behind me, but it wasn't her usual wave, she was waving with her hand by opening and closing it. This is a first. I looked behind me and that is how the person waving at her was doing it. Yay...another success.

After that we came home and Gracie and I took a nap, had lunch, and then we ran to the store for a couple of things. The rest of our day consisted of another nap and just playing around home. Gracie was in a very good mood today and had a lot of smiles for us.

Gracie had a hard time going to sleep tonight, her afternoon nap went a little late. Our whole schedule for today was off. She is now sleeping peacefully and I had better go join her. Morning will be here soon.

Thanks so much to all of you who continue to keep Gracie in your prayers. They are being heard and answered. Each day brings new successes. She is learning so many new things and is becoming so aware of her surroundings.

Love,
Lisa, Jeff, and Gracie

Wednesday - Happy Girl

Gracie had a GREAT night. I know it was great because I awoke at 4:00 a.m. and realized I hadn't been woken up since I went to bed. It felt great!!!! Gracie woke up about 6:00 a.m. and was a happy girl. She has decided that she loves Quaker Oat Bran cereal -- forget Cheerios, forget Fruit Loops...fiber filled healthy is the way to go. I'm certainly not complaining.

Jeff dropped Gracie off at daycare and she had a good day. I'm told she ate two helpings at lunch. I think she may be trying to grow into the top I put on her today. It was a 5T, one that she used to fill out to the max...and now it is way too big. She is really slimming down. When I picked her up at daycare tonight she was having a good time playing with the daycare dog.

Gracie was in a GREAT mood all night long. We went for a walk/wheelchair ride and then we played outside until about 7:30 p.m. Then we came in the house and I let Gracie run around in just a diaper. She has come to love doing that just lately. Then we read her new favorite book "Llama Llama Red Pajama".

For the last couple of nights when Gracie is snuggling on my lap with her bedtime bottle, I have been teasing her that I wanted a drink and I pretend to take it out of her mouth and I make a sucking sound and she giggles. So tonight she is snuggling in drinking her bottle and I say "Gracie, are you going to share your bottle with mom tonight?" Then I made the sucking sound and motion with my mouth. Well tonight she called my bluff. She popped that bottle right out of her mouth and stuck it up to mine. Suddenly I wasn't so thirsty. What a little nut.

She fell asleep so easily tonight and is sleeping very peacefully, even though we are having severe thunderstorms.

Tomorrow is Gracie's echocardiogram so we'll be on fasting mode in the morning. We're hoping and praying for a good report.

Love,
Lisa, Jeff, and Gracie

Tuesday - Another Busy Day

Gracie had another restful night with the exception of an hour in the wee hours of the morning again. She awoke in a great mood. I was finishing getting ready for work as Gracie roamed the house this morning. All of a sudden I heard something drop in the kitchen. I went in to find that Gracie had pulled a box of cereal off the cupboard, opened it up and was looking in. When I came to see what was going on, I think she thought she was going to get in trouble as she put her head down. Instead, I said "Gracie, are you hungry?" I helped her dig her hand in the box and she was one happy girl.

Gracie had a good day at daycare and had just awoken from a nap when Jeff picked her up. They headed to the clinic for Gracie's physical therapy appointment. She did great and was in a very good mood until she spotted the little sink. Suddenly it was tantrum city as that is all she wants to do -- turn the water on and off and play in it. We always let her at the end of the session, but she fusses and carries on until we do. We would do it earlier, but she won't end it, that is all she wants to do.

After PT we went to see Gracie's pediatrician...not because Gracie is sick, but because she is leaving the clinic. We are so sad to see her go and will miss her greatly. She has been with us since Gracie was two days old and she has been the greatest. Gracie showed off her walking skills, we snapped a few pictures, and then Gracie gave her a couple of the biggest, tightest hugs.

After supper we talked with Gracie's cousin Crystal. Crystal called to ask Gracie to be her flowergirl next summer. When I asked Gracie if she wanted to be her flowergirl, she gave me a big smile and clapped her hands. I guess that means "yes". It was so cute.

Gracie fell asleep quite easily tonight and is sleeping peacefully. I think I'm going to go join her.

Love,
Lisa, Jeff, and Gracie

Monday - Another Busy Day

Gracie had a pretty good night, although for about 30 minutes in the wee hours of the morning she was extremely restless and kept crying out in her sleep and tossing and turning. She finally fell back asleep by my feet and stayed there the rest of the night. I ended up having to wake her up this morning. I find that if I wake her up by singing "Deyo" (The Banana Boat song) she awakes in a good mood. Otherwise, not so much.

It was a little hard getting a move on this morning and realizing we had a place to be after her week home with daddy. Gracie went back to daycare today and was happy to see all of her friends there. She ate a good lunch and had just finished a snack when I picked her up at 3:30 p.m.

We headed home to meet with Sandy, Gracie's physical therapist. We worked on outdoor skills, walking in the grass, up and down the hill, climbing the deck steps, and stepping up on and down off our little porch platform. Then we came inside and worked on crossing her midline with her arms, and getting into her wheelchair all on her own.

Then it was time for a quick supper. Gracie had a total meltdown and I couldn't figure out quite why. I finally realized she has decided she no longer likes ravioli and did not want to eat it. So once we got her calmed down, all was well and she was only to happy to eat other things.

After supper we went to a Birth-to-Three playgroup. This is a playgroup of the kids that are served by the Early Intervention Team. We arrived a little late, but joined in on the music program. Gracie wasn't sure what to think, but when the drums and other instruments came out, she warmed up. At the last song, Gracie crawled away from Jeff and I and sat in the music leaders lap. Then it was time for free play, we went out to the playground where they have adaptive playground toys. The swings there were the best and Gracie got to fly high. She was giggling and having a great time.

She was so tired by the time we got home, she fell asleep in my arms drinking a bottle of formula. I layed her in bed and she is sleeping soundly.

If you have time for some extra prayers, Gracie has a follow-up echocardiogram on Thursday and then we meet with her cardiologist afterward. Gracie has thickened valves that could cause problems and could result in surgery for valve replacement, so needs to be followed closely. Any prayers that you could offer for a good report would be very much appreciated. Thank you!

Love,
Lisa, Jeff, and Gracie

Sunday - A Sunny Day to Play in the Water

Gracie had a pretty good night and woke up at 6:30 a.m. and had some good snuggles for mommy and daddy. She especially enjoyed it when daddy joined us in bed and we would squeeze her and tell her we were making Gracie sandwiches. That produced giggles.

Gracie was a pretty good girl in church this morning, she loves the music. She is a perfect angel when they band is singing, but as soon as it is time for the sermon/message, she gets a little ancy and doesn't want to sit. We visited after church and by the time we got home she had missed her morning nap and she was a tired girl. We ate an early lunch and then Gracie and mommy took a 2 hour nap. It started out as Gracie taking the nap, but she was so restless that 15 minutes in, I snuggled in with her and that calmed her quite a bit.

After naptime, we headed to the store to buy Gracie a new mattress. This one is a little higher than the one she is currently sleeping on, so I hope she can get on and off of it okay. I'm sure she'll learn over time how to maneuver up and down.

Today it hit the 80's and because of Gracie's meds, she was overheating so we filled her watertable, put it under the shade tree and spent the afternoon outside playing in the water. That is one of the best outdoor purchases we have made. She loves splashing in it and she was soaked by the time she was done. It did wonders in cooling her off too.

We headed to an outdoor BBQ restaurant tonight for supper and it was fun to sit outside and enjoy some fastfood. Gracie especially liked the french fries dipped in ketchup and her lemonade. We've been working on her ability to suck from a straw and she hasn't mastered that, so I would fill the straw and then let gravity help her. This was a huge hit. By the end, she could almost get some lemonade from the straw the traditional way. She didn't have quite enough sucking power to get it to the top of the straw. We're going to try some juice boxes next with the smaller straws.

After fun in the tub, Gracie ran around the house in only a diaper -- this is becoming one of her favorite things to do and she gets upset when we try to put clothes on her.

Gracie fell asleep in my arms drinking a bottle of milk and is peacefully sleeping. She needs to ger her rest...she gets to return to daycare tomorrow and see all of her friends.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Saturday - A Sunny Day to Swing

Gracie had a GREAT night and slept very peacefully. She awoke at 6:30 a.m. and was very content to snuggle in bed with me until 7:00 a.m. If you don't have to rush Gracie out of bed in the morning, she is a very happy girl.

We got up, had some breakfast, took a splish splash bath, and then played for a little while. She took about a 45 minute nap this morning and then Gracie and I headed out to buy her some new shoes. Gracie's are well worn from playing outdoors and I wanted a new pair for church and special occasions. Was I surprised to find out her foot has grown and well her current shoe's days are numbered. So I bought one new pair and ordered a second identical pair. They are the cutest little (actually big) shoes...size 10-1/2 extra wide. We also went to the mall and picked up a few things too. The "mommy's little princess" and "daddy's little cutie" shirts were impulse buys...but they were on sale. :)

Gracie was a great tease today. Every day I kneel on the floor and put my arms out and ask Gracie where my hug is. She is always happy to give me a great big squeezie hug. So today I do this as she is going around and around our kitchen island. Each time she goes around she gives me a hug. So Jeff asks where his hug is and stretchs out his arm. She walks close to him and then zooms around him to get to me to give me my hug, but daddy doesn't get a hug. This goes on and on and on and each time, she refuses to give daddy hugs. Then she decides to really add insult to injury and just gives me hug after hug after hug while daddy stands by with none. She so was teasing Jeff. It was hilarious.

Gracie ate a great lunch and then we headed outdoors to drive our little car around. Nap time followed that, but she only slept for 30 minutes. I should have known then that this would be trouble.

After nap, we headed to the park and let Gracie swing and swing and swing. She was so sad when we had to head back home. Her smiles are so big when she is sitting in that swing going oh so high. This park has one baby swing that holds her in and it is great fun.

The night went down hill from there. Gracie cried and had tantrum after tantrum. Bottom line was she was tired, but when we tried to put her down to sleep she could not wind down. She finally fell asleep at 8:30 p.m. and is now getting the rest she so terribly needs.

We're hoping for another beautiful sunny day tomorrow.

Love,
Lisa, Jeff, and Gracie

Finally Friday

Hello, this is the last post you will receive from me for a while, as I head back to work on Monday, Lisa (aka Mommy) will be back at the typing helm.

Today was a pretty good day for the Gracie-girl. We went visiting today. We had to go to our friend George's house to do some work on his computer. Grace did real well over there, playing with both George and his wife, Seig, while I was up to my elbows in wire (thank you, Gracie, for not drooling into George's computer!).

Grandma and Grandpa D came over tonite and we all had a real good time. Gracie and grandma hit it off real well. Gracie likes to avoid grandpa though. She will walk right at him - as if she is going to hop onto his lap, and then suddenly turn to the right or left and avoid him altogether. She is thinking that this is a pretty funny game.

One story from last night - a few days ago I mentioned being tricked out of my pillow by a little girl. I now have one better. Last night we were eating pizza for supper. Grace has already finished her supper and is now mooching from mom and dad - who then cut off little pieces and hand them over. So - Grace walks over to the stove and reaches for a whole piece that is still on the cutting board. Naturally, I dart over to the stove and give the standard, "no, no - no hands on the stove" speech. By the time I get turned back around, someone has made their way over to the table and snatched the pizza from my plate! Duped again!! I have to do a better of job of staying on guard. Oh well, I have many years to practice. Something tells me that I should hide the car keys now, just to get a jump on her.

Have a great night and weekend!

Love,
Jeff, Lisa, and Gracie

Home with Dad Thursday

Hello - 'tis I, Jeff, again - back on daycare and blogging duty.

Today was a good day for Grace. She slept in, until 7:00 (that's late in this house), and was in a pretty good mood all day. We didn't have a morning nap - and still stayed in a good mood. Part of the reason for our good mood this morning, was a field trip to see some of mom and dad's colleagues and friends. We stopped out and saw, Mona, Mary, Robin, Sherri, Karen, Jeanne, Jean, Melissa, Jennifer, Brenda, and Mary (sorry if I left someone out). Grace loves field trips of any sort, and loves an audience too - so you can imagine she was in top form. She got to show off her new wheelchair (of which she is very proud), show off her walking skills, and show how fast she could grab for items that she was not supposed to have - and then flash a, "who me?" smile at the slightest sign of trouble. Yeah, she was on top of her game.

After a good lunch, Grace took a (nearly) 2 hr nap and then off to Occupational Therapy. This, dear friends, is where Grace's mood took a turn for the worse. Unfortunately, or fortunately - depending on how you look at it - Grace has an excellent memory about activities that she has done in the OT area. One of these activities, turning a sink on and off, is something that really appealed to Grace (we love water, you know) - so now she thinks she needs to do that EVERY time we are in the OT/PT area. When you try to steer this headstrong little girl to another activity . . . uh, well - let's just say it wasn't pretty. Kudos to our OT person. She is a little more determined than Grace is and managed to get Grace to participate in some of the other activities.

We went for a walk/ride through the neighborhood this evening - again thoroughly enjoyed by the girl with the new wheels. She was all smiles for most of the trip.

She is now sleeping - at the end of a fun and busy day. Another one is on tap for Friday, as we are going to a friend's house to work on his computer, and then Grandma and Grandpa D are coming over in the evening. Woo Hoo!

Have a great day/night.

Jeff, Lisa, and Gracie

Wednesday - At Back Up Daycare Again

It's Lisa back at the blog today. Gracie had a pretty good night til about 3:30 a.m. and then woke up and had trouble getting back to sleep. She finally snuggled in and fell asleep until 5:45 a.m. She was in a great mood.

Gracie went to back-up daycare again today. She smiled when she saw all the fun toys. She played outdoors, read books, played with bubbles, and had a good day. She had a huge smile and hug for me when I picked her up. I do fear they forgot to give her much to drink today. Gracie was really whiny the whole way home. When I got home I gave her a drink and she guzzled it as if she hadn't had fluids for days. All night she just drank and drank and drank.

Gracie ate a good supper and then it was bath time. She had a great time in the tub splashing away. She has always enjoyed kicking her feet in the tub to make big splashes, but tonight she was opening her mouth and trying to catch the water in it. It was a riot to watch. Then she decided the top of her head needed to be dunked in the tub. She was quite the little comedian.

We read a few books tonight and then when I told her it was bedtime, she shook her head "no". Interestingly, I think it took her 5 whole seconds to fall asleep once we went into her bedroom. Sweet dreams tired girl.

Love,
Lisa, Jeff, and Gracie