Tuesday, June 30, 2009

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.

Lisa, Jeff, and Gracie

Monday, June 29, 2009

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.

Lisa, Jeff, and Gracie

Sunday, June 28, 2009

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.

Lisa, Jeff, and Gracie

Saturday, June 27, 2009

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.

Lisa, Jeff, and Gracie

Friday, June 26, 2009

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.

Lisa, Jeff, and Gracie

Thursday, June 25, 2009

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.

Lisa, Jeff, and Gracie

Wednesday, June 24, 2009


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.

Lisa, Jeff, and Gracie

Tuesday, June 23, 2009

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.

Lisa, Jeff, and Gracie

Monday, June 22, 2009

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.

Lisa, Jeff, and Gracie

Sunday, June 21, 2009

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!

Lisa, Jeff, and Gracie

Friday, June 19, 2009

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.

Lisa, Jeff, and Gracie

Thursday, June 18, 2009

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.

Lisa, Jeff, and Gracie

Wednesday, June 17, 2009

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.

Lisa, Jeff, and Gracie

Tuesday, June 16, 2009

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.

Lisa, Jeff, and Gracie

Monday, June 15, 2009

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!

Lisa, Jeff, and Gracie

Sunday, June 14, 2009

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.

Lisa, Jeff, and Gracie

Saturday, June 13, 2009

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.

Lisa, Jeff, and Gracie

Friday, June 12, 2009

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!

Jeff, Lisa, and Gracie

Thursday, June 11, 2009

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, June 10, 2009

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.

Lisa, Jeff, and Gracie

Tuesday, June 9, 2009

New Wheels Tuesday

Hello all! As previously warned, it is - indeed - I (Jeff) writing the blog tonite, and possibly for the next few days. I am off this week, and staying with Grace, so I am on writing detail.

Today was a good day. Grace got up around 6:30 this morning - and had a very smiley day.

Our big news is that we got our new wheels today!

We had a 12:30 appointment today to meet with our physical therapist and the group from the wheelchair company, to pick up, and get our final fitting for our new wheelchair.

Gracie liked the wheelchair from the moment she saw it. Then when we got to sit in it - well, we were just a happy camper (or maybe camperette?)!

The chair is suited just for her height and width (in the seat), and is expandable, so it can grow with her.

After going home from the Clinic, we had a short nap and then out for a ride in the new chair. This was the first ride/walk that Grace has been out on where she has been in an upright position (the stroller, just leans back too far). I won't use the over used expression that she had a smile that was a mile wide (cuz, like really? how big would your mouth have to be?) - but, she did have a smile as big as her whole head!

The rest of the day was made up of playing, reading, lunch, naps and, of course - tricking dad. Grace had settled down on the mattress in her room. I thought she was going to take a little nap, so I said, "Naptime? I'll lay down beside you dearie." I pulled up a pillow and lay my head beside her, all snuggled up. Well, pretty soon she shifts a little bit. To make her more comfy, I shift a little too. She shifts again, dad shifts again. After a short time, I found that I was no longer on the pillow, and Gracie now had the full pillow to herself. It should be no surprise to you that she stopped shifting after that! 43 years old, and I am being duped by a less-than-two year old. It's going to be a long 16 - 17 more years. But, I'm going to love them!

Grace is now lying down with mom in and attempt to go to sleep. She will be sleeping soundly in a short while. Sweet dreams, little one.

Good night to all of you.

Jeff, Lisa, and Gracie

Monday, June 8, 2009

Monday - A Busy Day

Gracie awoke at 6:00 a.m. this morning after another restless night. She ate a good breakfast and was ready to start the day with mommy and daddy. Both of us were off work with her today.

Gracie stopped by to see honorary Grandma Gina, while daddy got his haircut and then she went home with daddy, while mommy stayed to get her hair done. By the time I got home, Gracie had eaten lunch and was dressed for an outing. We headed to the clinic where they had a folk-type singer. Gracie enjoyed the music, but I think the artist talked a little too much for her liking and she got bored at times. Gracie also got to meet daddy's friend and colleague Sarah, who gave Gracie a beautiful green teddy bear. Gracie didn't seem to be appreciative at the time, but carried him around and around and around the island in the kitchen tonight. They are becoming fast friends.

Then we headed home for a nap. Gracie fell right to sleep and woke up just before 3:00 p.m., which was when Emily, her ECSE teacher came to work with her. Emily was happy to see how much progress Gracie has made since her last visit. Gracie was in a very social and happy mood. At 4:00 p.m., Emily was joined by Sandy the PT and their supervisor Mary. These three women are great women to have on our team. Their love of children and helping them to succeed is so evident. We met to talk about goals for Gracie for the next year. She has pretty much hit the majority of the goals that were put forth for her a year ago, although purposeful release is still a hard one for her. We'll work on self-help skills, feeding herself with a spoon, working on her drooling, and really concentrate on her communication skills. I'm very optimistic that Gracie is up to the challenge.

I could tell that today was a big day for Gracie, she was very tired tonight and had a few meltdowns when she didn't get her way. She fell asleep about 7:45 p.m., although is restless again.

I'm back to work tomorrow, but daddy will be hanging out with Gracie...so you may hear from him tomorrow night.

Lisa, Jeff, and Gracie

Sunday, June 7, 2009

Sick Sunday

Gracie had a restless night and I discovered my answer to whether she had allergies or was getting a cold -- she came down with a nasty cold. This poor child has more nasal drainage than one child should be allowed. She's got a nasty cough to go along with it.

We had planned on going to a graduation today, but instead stayed home and didn't even go to church. Despite the nasty head cold, Gracie was in a pretty good mood through the morning and early afternoon. We read a lot of books, played with her toys, did a little work on her balance ball, did some snuggling, and just hung out. Gracie looked so pale all day and her eyes glassy, but thankfully has not run a fever. I think this is just a good old fashioned cold.

We did find out this weekend that Gracie enjoys the fruits of summer - these are the ones we tried and all were a hit: strawberries, blueberries, and nectarines. She always has been my fruit girl.

Late afternoon was a bit rougher for Gracie, she was tired and just not feeling great. She did perk up a little in the tub. We let her watch a soothing music dvd this evening and that seemed to relax her. She's now in bed, but with the nasal drainage I'm pretty sure we'll have a restless night.

Have a good week.

Lisa, Jeff, and Gracie

Saturday, June 6, 2009

Saturday with Mom & Dad

Gracie had an okay night. She tossed and turned a bit, but not as much as other recent nights. She did sleep in til 6:45 a.m. this morning and that was a great treat. She awoke in a good mood and did a little snuggling with mommy and then went in search of her dad.

Gracie was a good girl all day long and she had mommy and daddy's undivided attention most of the day. It is so much fun to realize that she is understanding so much more each and every day. She is following instructions (when she wants to) and definitely lets us know her wants. Today we were eating some cinnamon sugar tortilla chips and she wanted more. She signed "more" and then held out her hand. Triumph!!!!

Gracie has come down with either another cold or has allergies. I'm starting to suspect allergies as mine have been terrible this week, but not certain if that is her ailment or not. She sneezes constantly.

We all took an outing to the store today -- my favorite store -- as Jeff calls it, my home away from home -- Target. Gracie was soooooo good!!!! She would attempt to reach for things off of the shelf and when I would tell her "no" or "I don't think so", she would just smile and giggle. She was just being a little jokester.

Tonight we went to a graduation party and Gracie was a bit of a terror. Grabbing for everything on the table, knocking a cup full of Skittles to the floor and then fussing a bit. However, when we got in the van to come home she was the happiest girl ever.

I've also discovered that she is daddy's number one fan!!!! Tonight in the van we had some golden oldies on and Jeff began dancing with his head while he was driving and just being goofy. Gracie thought this was hysterical. Just what he needs...an audience.

Gracie is asleep, she went down a little later tonight so maybe that will mean a little later sleep in tomorrow. Hmmmm???!!!

Lisa, Jeff, and Gracie

Friday, June 5, 2009

Friday - A Change to the Routine

Gracie had a very restless night last night. Not sure why, but she tossed and turned most of the night. She was cranky when she awoke and so we rocked for a little while and she snapped out of it fairly quickly.

Today Gracie went to a back-up daycare center as our daycare is on vacation. We weren't sure what to expect and were a little nervous about how she would do in a center setting. When we dropped her off, she played shy for about two minutes then hopped down and was ready to play with all the new toys. She had a great day and the staff were wonderful. They encouraged us to call to check in on her, which I did...but only once. She played outside, read books (a favorite thing to do) made us a beautiful picture, played with big legos, but her favorite attraction was the mini-sink! When I arrived to pick her up she gave me a great big smile and laughed, then she hugged me so tight. It was very sweet.

Gracie was a tired girl tonight, but was in a great mood all evening. She ate a good supper and babbled alot tonight. I've noticed over the last week and a half she is jabbering a lot more than she ever has. She also is starting to understand sign language more. Tonight I was reading her a book and she wanted me to read it for the third time and she signed "more". I about cried with pride.

Gracie was very restless as she was falling asleep tonight. I think she was plain and simply overtired. She is resting peacefully now.

Have a good weekend...sounds like we may need to get out pants and sweatshirts again!

Lisa, Jeff, and Gracie

Thursday, June 4, 2009

Thursday - A Great Mood

Gracie had another great night last night. She awoke and was in a good mood all day. There was no question, she was daddy's girl today. Jeff many times takes her in the bathroom with him in the morning when he brushes his teeth, then they brush Gracie's teeth. She gets to stand on the sink in front of the big vanity mirror. Today she was just tickled beyond words to be up there helping.

Gracie had a great day at daycare. I think Barb and Michelle put a quarter in her today. She was full of energy and giggles and laughs when I picked her up. She got to play outside today and in order to play outside she has to crawl up the steps. She has that mastered.

Gracie was in a good mood this evening too. She did have one tantrum when mommy told her she couldn't open the dishwasher door. I'm not sure what the appeal is, but she loves to do that. As usual, she had a blast in the bathtub tonight.

Gracie's daycare is on vacation tomorrow and next week, so Gracie will be going to a daycare center tomorrow. I hope and pray all will go well.

Gracie was a tired girl tonight and is sleeping soundly.

Lisa, Jeff, and Gracie

Wednesday, June 3, 2009

Wednesday - A Happy Day

Gracie had another great night. She awoke this morning and after her initial sleepy grumps passed, she was in the best of moods. She was laughing and singing. She has an obsession with pushing the button on the TV that controls the channels. She just pushes continually -- that is until today she found CMT - the country music channel. She smiled as if she had finally found what she has been looking for and began to dance.

She sang and talked all the way to daycare. It was one of those great mornings where you just want to stay home with her and play all day. Gracie got to play outside today and was enjoying the afternoon sun when Jeff picked her up. Gracie had physical therapy at the clinic today and our PT was super impressed with Gracie's strength, steadiness, but most of all her cognitive skills and how much more aware and engaged she is. Gracie's legs have never been able to be flexed flat to the floor, well I've been doing stretches with her every day and her PT was able to flex her completely flat today -- this is HUGE!!!! Gracie has an obsession with the little sink in the PT/OT area and had quite a tantrum when she was not allowed to play with it this afternoon. Gracie's wheelchair is done. We have an appointment to pick it up next Tuesday.

Gracie was not too interested in eating dinner this evening. She did enjoy throwing it over the sides on the floor. She was in a good mood after dinner, but very tired. I also noticed a lot of twitches when I put her to bed tonight -- at least now I know those are nothing to be worried about.

She is sleeping peacefully and I think I will go join her shortly.

Love to all,
Lisa, Jeff, and Gracie

Tuesday, June 2, 2009

Tuesday - Another Happy Day

Gracie had another really good night, however, she woke up on the wrong side of the bed this morning. Nothing was right with the world. I gave her extra snuggles, I gave her some floor time just to veg, I put on music, but the bottom line was she was still tired.

I took Gracie to daycare and she mellowed out on the ride there. She was not sure she wanted to stay, but that is the theme lately. She is at the age where she knows how to make mom and dad feel guilty. Gracie had a good day. She ate a good lunch and played outside. Daddy picked her up and they visited with Grandma and Grandpa D for a little while, as well as Great Aunt Ann and Great Uncle Denny. There were telltale signs of M&M's on Gracie's shirt when she got home -- I think Grandma was spoiling her. Jeff mentioned that Gracie signed "more" again when prompted.

Gracie ate a good supper and then we headed outdoors for a stroller ride/walk. Gracie is really becoming aware of her surroundings, she notices the trees and the birds. All things that really didn't even hit her sense of awareness. She wants to touch all the leaves and many times, I just stop and let her. Tonight we stopped and I let her feel the needles on a pine tree. She thought that was pretty neat. She was so tired on the first part of the stroller ride, but got her second wind the second half of the trip and was singing and talking and yelling in happiness. Her arms and legs were going a mile a minute too. When we got home, Gracie took her car for a spin and then it was bath time. She was a splashing machine.

She was so tired tonight, it took her mere seconds to fall asleep. She hasn't moved since I layed her on the bed.

Lisa, Jeff, and Gracie

Monday, June 1, 2009

Monday - A Happy Girl

Gracie had a great night and awoke at around 6 a.m. this morning. She was ready to start the day and was very much daddy's girl. She did not even want to let mom kiss and hug her before she left for daycare.

Daddy dropped her off at daycare and as is with most Mondays, did not want him to leave. Tears were shed. When I picked Gracie up this evening she was a little sad because one of her daycare providers left for a little while. She snapped out of that mood pretty quickly and was in a very good mood all night long. We got lots of smiles tonight.

While I was cooking supper, I gave Gracie some fruit and crackers to munch on til our meal was ready. These were a new multi-grain cracker by Special K that she hasn't had before and she loved them. The box was still on the table as we were eating and she pointed at them because she wanted more. After she ate that one, she still wanted more and with a little coaxing, signed "more". Slowly she is starting to make some sign gestures.

We went out for a stroller ride after supper and then did a little walking after that. She was excited to see Annabelle, our neighbor's dog, and enjoyed being outdoors.

She fell asleep in record time tonight. She was one tired girl.

Lisa, Jeff, and Gracie