Monday, December 14, 2009

Monday - Busy Day

For having gone to bed late, Gracie forgot to sleep a little later. She was up bright and early at 5:30 a.m. This morning her occupational therapist, physical therapist, and early intervention teacher from the Birth-to-Three program all came for their last visit of the year. Gracie worked on her ability to step up on higher objects (such as a curb) without using hands and is doing really well. She has the motor ability, but is lacking the confidence, so we will continue to work on that. They also brought three tubs along, one with beans, one with rice, and the other we filled with water. There were little toys in each and she was supposed to dig through each item to get them. She would have nothing to do with the beans. She did go digging in the rice but was cautious. The water was her favorite by far and she was splashing in it and having fun. Gracie was sad to see her friends leave.

Then it was time for daycare. At this point, I could tell Gracie was low on sleep. She had a meltdown when I put her coat on, a meltdown when I put her in her car seat, and a meltdown when we got to daycare. She was a much happier girl when daddy picked her up. They had a good time together and she was happy to see me when I got home. She had a very good evening and was a pretty happy girl all night.

Our big accomplishment of the day was that she did her business in her diaper, then went over to Jeff and signed "potty". Now it was more than potty, but this was a good first step.

She is now asleep and snuggled under her Winnie the Pooh fleece blanket.

Love,
Lisa, Jeff, and Gracie

Sunday, December 13, 2009

Sunday - Daddy's Home!

Gracie had a very good night last night and slept til 6 a.m. We stayed in bed and snuggled til 7 a.m. Gracie and I had a great day hanging out. She was a good girl while I "went to church on TV". She likes the music and dances to that.

We did lots of laundry today and Gracie is a big help. She throws the cup of laundry detergent in the washer for me. She loves to watch the water come in the washer and is the dryer door monitor for me as I put the clothes in it or take them out.

We also read books, worked on targeted purposeful release (which she can do quite well), played basketball, watched a video, listened to music, and just bummed around the house. It was nice to have a day where we didn't have to be anywhere.

Gracie bumped her chin today on the gate over our stairs and although it thankfully didn't split open again, she cried and cried and cried. Since Gracie rarely cries when she gets hurt or it's fairly short-lived, I knew this bump did not feel good.

At 6:15 p.m. we got in the van and went to pick daddy up at the airport. Gracie was very happy to see him. The rest of the night it was playtime or "family walk" time. Family walk is one of Gracie's favorite things. She has to hold both Jeff and my hand and we just walk around the house with her. She loves this.

It was a good day. Oh and she learned to say "Gracie", or at least repeat it after I say it.

Love,
Lisa, Jeff, and Gracie

Saturday, December 12, 2009

Saturday - Fun with Family

Gracie awoke bright and early at 6:00 a.m. YAWN! We snuggled for a little longer than usual -- after all it is Saturday, and then got out of bed about 7:00 a.m. After breakfast we took a quick bath then headed to the clinic for Gracie's second H1N1 vaccination. Gracie's first dose had been the FluMist, but we were told earlier that this would have to be an injection as the clinic would not be receiving any more mist. I'm happy to say they did have the mist and we were able to go that route. The preservative in the injection made me a little nervous for Gracie's well-being. I wouldn't hesitate to go with the injection for a child without any health issues, but it does make me nervous with Gracie's special issues.

We met up with aunt Sheila and cousin Jason at the clinic and took Jason home with us. Gracie was thrilled to have a playmate for the day and Jason is always so good to her. She was a bit demanding and willful at times today, especially when she would take Jason's hand and want him to walk with her, over and over and over again.

Gracie is continually demonstrating her independence. Today I gave Jason a muffin and also gave Gracie one that was cut up. She refused the plate and fussed. She wanted a whole one just like Jason. She will no longer drink out of a sippy cup at the supper table. It has to be the same type of glass that we are drinking out of. She does quite well with this.

It was a nice day and I bundled Gracie up and Jason and I took her for a nice long walk. I think she really enjoyed the fresh air on her cheeks. Later in the afternoon aunt Sheila and cousin Kayla came over and they brought us some snacks and then had supper with us. Gracie was very upset when they had to leave. She was also a tired girl as she didn't take a very long nap. She was asleep by 7:15 p.m. tonight. I hope that doesn't mean she'll be getting up too early in the morning.

Love,
Lisa, Jeff, and Gracie

Friday, December 11, 2009

Friday

Gracie awoke way too early this morning at 5:30 a.m. I had thankfully just gotten out of the shower. She was pretty sober at first, but smiles did find their way to her face. Gracie was a bit of a pill when I dropped her off at daycare. She had a little naughty streak, not sure what got into her. When I picked her up she was watching Frosty the Snowman on TV and was in a better mood.

Gracie was a good girl tonight. After we got home she asked for a banana, so I handed it to her and went to get a knife to cut it. When she saw me coming, she said very adamantly, "No Mama". She didn't want me cutting her banana. She proceeded to open the peel, mush the banana and pull it out in pieces and she ate the whole thing that way. She was so proud of herself.

Tonight Gracie signed "daddy". I told her that daddy was bye bye and she signed "Daddy bye bye". It was very sweet. I know she misses him, but is doing very well just hanging with me.

Tomorrow we head to the clinic for her second H1N1 vaccination. Hopefully all will go well.

Have a great weekend.

Love,
Lisa, Jeff, and Gracie

Thursday, December 10, 2009

Thursday - Getting Back in the Routine

Things seem to be returning to normal around here, with the exception of Jeff still being in Chicago. Gracie and I both had a great night's sleep and awoke refreshed. All that sleep left Gracie hungry. She usually will only eat a little applesauce or pear sauce in the morning. Just enough to get her meds into her. This morning she was hungry. She ate all of her pear sauce, a chocolate chip waffle and then started in on mine. Then she signed she wanted a banana and ate a half of one. Could she be growing again? I think the answer is yes. My two year old remains in 4T pants, but is moving out of 4T tops to size 5 and 6. I think I wore size 6 when I went to kindergarten.

Gracie had a good day at daycare with the exception of finding that Frosty the Snowman who sits in daycare's front yard met his demise yesterday and no longer exists. I'm pretty sure he didn't melt with these cold temperatures.

When we got home we found three little snowmen in our front yard...it was a snow family replica of our family...a big one, a middle size one, and a little baby Gracie one. Thank you neighbor Diane for making our night. Gracie and I took a walk in the snow. She was quite intrigued, she even walked through it while I steadied her. She didn't have boots on, so I think it started to get cold. Then when we came in the house Gracie saw the snow on my pants and started to cry. I assured her it was okay and all was well.

Gracie got to talk to daddy on the phone tonight. She smiled the whole time and whispered "hi" about 10 times.

It didn't take long for our little munchkin to fall asleep tonight. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Wednesday, December 9, 2009

Blizzard Wednesday and Another Trip to the ER

Gracie got to hang out with me all day today as the big Minnesota blizzard hit. The driveway was plowed out and I awaited the snow plow to come by as our street was impassable, so I could head to daycare and work. That never happened. The snow plow finally came through about 3:30 p.m. Just in time for our trip to the E.R.

Gracie was kneeling on the floor playing with her bicycle helmet, hit her chin on it, and her cut from last week reopened. We were stilled snowed in at the time so I called the nurses line, they transfered me to the ER, and they thought it would be worthwhile to come in, as Gracie is allergic to the adhesive on bandages or tape, so we couldn't use one to keep it together. After that I called the Department of Transportation to see if they planned on plowing any non-emergency route streets. About 20 minutes after the call they came through. As snowplows do, they plowed my driveway back in. So I bundled Gracie up, put her in her car seat, pulled the car in the driveway so she was right there and began shoveling us out. I shoveled just enough to squeak my car through and headed to the ER. We had the awesome resident we had last week when we were there for the original cut. She is awesome and Gracie really took to her. The consultant was a physician we've seen at the ER on many occasions, it's kind of scary to think that we've been there so many times he recognized us.

We talked through some options as the cut came totally apart again. It's obvious the glue didn't hold, stitches were a possibility but would have to be bandaged...no can do because of the adhesive allergy or sensitivity. In the end we decided to leave it knowing it will leave a pretty dandy scar. I was sent home with a topical antibiotic to ward off infection. When it was time to go, Gracie had been holding the consultants stethoscope as a bribe to let him look at her chin, she wouldn't let it go. So as I talked to the insurance people, the two doctors took Gracie out to do a swap of the stethoscope for stickers. When I went out to the hall they were no where to be found. I was quickly pointed to a cubby around the corner, where they had Gracie standing on the cupboard picking out stickers. The whole hallway was enamored when she signed "thank you".

Gracie and I did alot of reading today. She has become a huge fan of my "Deceptively Delicious" cookbook. I think she is trying to figure out my nutrition tricks. She also loves the "Christmas Story" book right now. I have to read that one over and over and over again. This is good, as she hopefully will learn the true meaning of Christmas.

I'm getting Gracie's cozy clothes out for tomorrow. Sounds like it will be wickedly cold.

Love,
Lisa, Jeff, and Gracie

Gracie was a trooper

Tuesday, December 8, 2009

Tuesday - Snow, Snow, Snow

Gracie woke up shortly after 5 a.m. this morning. She coughed quite a bit at times through the night. Other than that she slept pretty good. At one point she did sit up and then just let her head fall down and slam into my nose. I saw stars there. My nose is still feeling quite tender.

Gracie was supposed to have OT today, but due to the weather we decided to cancel it as her therapist lives out of town. I picked Gracie up at daycare and she was a happy girl the whole way home. I was thankful of this as the roads were slick and that's where my concentration needed to be.

Tonight was fairly uneventful, just a nice evening at home with the two of us. Gracie enjoyed her bath, but discovered an owie on her leg. When I said it was an owie, she pointed to her eye. She associates all owies with the one she got on her eye a couple of weeks ago.

Gracie fell asleep very quickly tonight, she was a tired girl.

Love,
Lisa, Jeff, and Gracie

Monday, December 7, 2009

Monday - Progress Report.

Gracie was very hard to wake up this morning and she looked so cozy and all snuggled in. I finally was able to sing her awake and she was in a good mood. Gracie's cold seemed a little better today, but because her nose is so plugged, she is more of a drool monster than usual.

Some of the glue and the crust of Gracie's chin injury fell off today. It made me a little nervous at first as it isn't supposed to start coming off for 5-7 days and we are only on day 4, but since it is looking good I think we'll be fine. I'm sure it is from all the drool on her chin from this cold. How do you keep a drooling girl's chin dry? It just isn't possible.

Today when I picked Gracie up at daycare, Michelle was blowing bubbles with her gum. Gracie intently watched her and then decided she was going to do so too. You could see her little mouth just a moving, and then all of a sudden she stuck her tongue out of her closed mouth just a little bit and in her mind she blew a bubble. She was so proud of herself and of course our laughter just egged her on.

Today Gracie's teacher and physical therapist from Birth to Three came for a visit with Gracie. It was her progress report day and I'm happy to report she got "adequate progress" selected on all of her goals. Some of the goals she has accomplished quite nicely and there are some areas to work on as well. We are all very pleased with her progress and Jeff and I know what areas we need to work on with her. As always she was very happy to see Emily and Sandy.

When Jeff came home from work, I ran to Target. When I got home Gracie was snuggled on Jeff's lap fast asleep. She awoke when we went to put on her jammies and she had a burst of energy. She was chattering up a storm.

She is now sleeping peacefully all snuggled under the covers.

Love,
Lisa, Jeff, and Gracie

Sunday, December 6, 2009

Sunday - Christmas Tree

Gracie had a pretty good night and slept with her head on my stomach for a good part of the night to keep her head elevated to ease breathing with her cold. She awoke bright and early again this morning at 6:00 a.m. She was in a good mood and was ready to start the day. Gracie's cold was in full force today, I don't think I have ever seen so much snot come out of one child's nose. It was a faucet turned on high. Her poor little nose is red and raw from wiping it, but she is learning to blow it. Yay!

This morning Gracie and I went downstairs for her bath and she spied the Christmas tree that Jeff and I had put up last night after she was in bed. Her eyes lit up and I said "Christmas tree" and she repeated me plain as day. After that she just called it a tree, but she was very excited about it.

She was equally excited when Jeff put the lights up on the outside of the house and she started to clap when we turned them on. I let her stand on the window ledge (with me holding her) watching daddy outside. That was great fun for her.

Gracie was in a better mood today, but her ears were bothering her again. I did give her some ibuprofen and that seemed to do the trick. We continued to keep an eye on her chin cut today. I was thinking it looked infected, but just wasn't sure. We decided against taking her in yet and by tonight I thought it was looking better. Hopefully it will continue to look even better tomorrow.

Gracie is now asleep, although very restless. I think I need to go snuggle with her.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Saturday, December 5, 2009

Saturday - Another Cold

Gracie awoke bright and early at 6:00 a.m. this morning. I could tell from her stuffed up breathing she is getting another cold. Today was just not Gracie's day. We could tell that she just didn't feel great.

We headed to the mall for pictures, but Gracie wouldn't smile and was looking quite tired. After that we went to see if Santa was at the mall and sure enough he was. Gracie smiled when she saw him and just watched him intently. We didn't have her go "visit" him this year yet. As tired as she was, I just didn't think it would go well.

From there we headed home and Gracie was so tired that she fell asleep without any lunch. She slept from 12:00 to 2:30 p.m. She awoke at about 1:00 p.m. and layed in bed but still looking out of it. I layed down with her and we both fell back to sleep til 2:30 p.m. That helped her mood for awhile and she was very affectionate, giving lots of hugs and kisses. We had a lazy afternoon and Gracie and I read lots of books. To get into the Christmas spirit, I pulled out all of her Christmas themed books and we read those.

Gracie's mood was rather fragile this afternoon, and she would get easily frustrated or unhappy, but we weren't sure why. I do think she just didn't feel great. Gracie's cut under her chin is looking like infection may be setting in. I'm keeping an eye on it and if it looks any worse in the morning, I will need to take her back to the ER tomorrow to have them drain the infection. Ugh.

Gracie is now sleeping. I'm hoping she will be a happier girl in the morning. We put up the tree tonight while she was sleeping, so maybe that will be some good excitement for the morning.

Love,
Lisa, Jeff, and Gracie

Friday, December 4, 2009

Just dad and his girlie

Tonite's installment of the Gracie Update is brought to you by Jeff the Dad, as Lisa was gone for most of the evening.

Grace had a good day at daycare. When I arrived for pick up they said, "She had a better day today than yesterday!" (recalling yesterday's fall that led to the E-R visit) I thought that was pretty funny. When I arrived, everyone was watching the beginning of Frosty the Snowman -and of course, I couldn't just up and leave in the middle. So we waited until Grace lost interest in the TV before leaving.

It was a great night for us. We played and stretched out. We went downstairs to see the fireplace and load the wash machine. Grace just loves to help, and chatter the whole time.

Grace had something new for supper tonite. I made up one of those frozen dinners in a bag, that has all of the ingredients and you just cook it up and serve a "gourmet" meal (uh huh). Anyway, I was not too sure if she would like it or not -but, yes, true to form, Gracie ate up all that was placed before her (I don't think there is anything she really despises - yet).

We had a few new words - and a sign "sentence". I was doing something goofy and she enjoyed it. Rather than just signing "more", she signed, "dad - more" actually telling ME to do something for her. I was so proud!

Grace also thought it was a funny game to push dad over this evening. We were sitting on the floor together and she would push me in such a way that I would fall over - after I would sit back up, Grace would wait about 10 seconds and the push me over again. She's going to love slapstick/physical comedy - I can't wait!

Grace was very well behaved and jovial the whole night - right up until bedtime. When bedtime came, she was awake - awake - wide awake - asleep (yeah, about that fast), and hasn't moved since I set her in her bed.

Good night little girl. Sleep well.

Good weekend to all of you!

Love,
Jeff, Lisa, and Gracie

Thursday, December 3, 2009

Thursday - A Trip to the ER

Gracie awoke in a good mood and we got to snuggle a little bit this morning and read a few books. I love mornings when we have a little extra time, they are few and far between.

Daddy dropped Gracie off at daycare and she was having a good day until she fell and cut her chin. The cut wasn't terribly deep, but it was quite wide. Would you believe Gracie didn't even cry. I picked her up at daycare and we headed to the ER. I was sure it would need a couple of stitches. We had the nicest nurses and doctors and indeed they too felt the cut needed to be secured, but not with stitches, with a Dermabond super glue. First they put a numbing gel on the chin and cut so that when they applied the glue it wouldn't hurt. The gel had to be on for 30 minutes. Then they washed out the cut and super glued it. It was pretty amazing. We have to be careful not to get any lotions, vaseline, liquids, etc. on it for 7 days. Gracie was a trooper throughout. Her chin looks terrible, not from the cut, but from the reaction to the adhesive on the tegaderm bandage they used to hold the numbing gel on. It took 4 of us to hold her down and get the wound glued. She was not happy about that at all. The nurse told me that it was totally age appropriate and they would have worried if she didn't fight it.

All this excitement took longer than expected and we got home just long enough for Gracie to eat a little something and take a nap before heading to the clinic for an appointment with the Medical Genetics physician that follows her. As much as our neurologist and our other care providers are loved by Gracie, Jeff, and I. I'm not as thrilled by this physician. It's like he is just looking for problems, almost like he wants us to have issues and problems and seemed disappointed that we were doing as well as we are. Gracie does not take to him either. She was a very happy girl to wander the office, but didn't want any face time with him at all. He asked about her verbal skills and I told him she had 15 verbal words and 25 - 30 signs. Gracie was not talkative in his office at all, another sign that she doesn't like him so much. After a while he told me that she didn't seem to be verbal. I finally told him perhaps he should ask the staff on the pediatric floor whether or not she is verbal. As we left, he did tell us to keep up the good work. We don't have to see him for another year.

Gracie was very social once we left his office. We visited Auntie Sheila for a few minutes and then were off to the ramp where mommy (yes me) forgot what floor I parked the car on . I totally didn't have a clue. Ahhhhhhhhhhhhhhhhhh. So we wandered a couple of floors until I found it. Gracie was a sweetheart through all of this.

We gave Gracie a very quick bath tonight since she isn't to get her chin wet and she is the splashing queen. After her bath, she was playing with a toy that you put a ball into and it starts music playing. She put the ball in, would dance to the music, the music would stop and she would get the ball and put it in again. This is HUGE. Just a few weeks ago she would have nothing to do with this toy.

Gracie's other big accomplishment for the day was finding a duck in her toy box and telling me it was a "duck". Then she proceeded to say "quack".

The successes are so sweet.

Love,
Lisa, Jeff, and Gracie

Wednesday, December 2, 2009

Wednesday - Birthday Cake

Gracie was a sleepyhead this morning, but that worked well as daddy was on late shift so she got to sleep in and hang out with daddy for awhile before he took her to daycare.

Gracie got to have birthday cake at daycare today as two of her playmates are having birthdays this week. On the way home from daycare I handed her one of her dolls and told her I thought the baby was cute. Cute became her new word. The whole way home she said "cute". Once we got home, we had to walk down the street to see our neighbors Frosty the Snowman lawn ornament. We sang the song and then went to get the mail. I asked her if we could run, because at this point I was cold. So we ran to the house, Gracie walked in and up the steps on her own with me holding just one hand.

Tonight she got very frustrated. She was trying to tell me something that she wanted, but I couldn't figure it out. I think it may have been more about her being tired than her really wanting anything. So we did alot of snuggling. Gracie was happy to see daddy come home and we all just mellowed for awhile.

Gracie fell asleep very quickly tonight. I think I will too.

Love,
Lisa, Jeff, and Gracie

Tuesday, December 1, 2009

Catching Up

A lot has happened since Thanksgiving. On Friday we loaded ourselves in the car and drove 3 hours to spend time with Jeff's family and to celebrate Gracie's great grandma's life with a beautiful funeral service. Gracie and I spent most of the funeral in the back of the church as Gracie doesn't like to sit still these days. Jeff spoke at the funeral on memories of grandma. At one point he said something funny and his biggest fan at the back of the church (yes, Gracie) laughed out loud too. Gracie got to spend some good quality time with Grandma & Grandpa D., Auntie Kathy, as well as cousins and great aunts and uncles. We spent the weekend in a hotel and Gracie enjoyed taking walks, running the long halls (we were pretty much the only ones at the hotel, so we let her make as much noise as she wanted). She also made friends with a lady that lives at the hotel and her very cute little puppy.

We travelled home on Monday and got home in time to allow Gracie a much needed nap, before we headed to the clinic for a late afternoon appointment with Gracie's neurologist. Gracie was looking especially cute (I know I'm a little biased) in a jean jumper, tights with little pink hearts, and a bright pink headband. She made the rounds to all of her favorite desk staff as well as others she knows to say hello. She took a few of the clinical assistants for walks, and when it was time for our appointment with Dr. N., she promptly took her hand, lead Dr. N. to her desk chair and sat on her lap. Gracie was in a great mood and pretty much charmed everyone. Our news was good. Dr. N. was very pleased with the progress that Gracie is making. She is hitting good milestones, and she was especially pleased with Gracie's blossoming verbal skills. She even treated Dr. N. to a "hi" and later she heard her say "up". Although Gracie is delayed, Dr. N. has a great way of making us realize that she isn't as far behind as we sometimes think. She puts a lot of things in perspective for us in a really good way. She was extremely pleased to hear about all the projects and work that Gracie's daycare is doing with her. Dr. N. emphasized how important that was for her to continue to grow and how good the peer modeling was for her. Thank you Barb and Michelle!!!


We will continue to keep her on her current dose of seizure meds, but are gearing up to increase at her next growth spurt. She has not had any type of seizure activity since late July so her dosing is good and we want to make sure we stay on top of it by increasing as her weight increases. Her current dose is on the low side of normal, so we are at a good place with that.

Today it was back to our normal routine. Gracie was happy to see her friends at daycare. She was busy doing lots of fun projects today. One was a family tree, oh so cute. Jeff picked Gracie up at daycare and headed back to the clinic for Gracie's PT appointment. She was full of energy and was so cooperative and just so much fun to be around. Everyone in the exercise room was so impressed with her progress and today she was very verbal. At one point, Gracie's PT asked her if she watched football with dad. Gracie didn't hesitate to respond quite loudly "Yep". Then Leslie asked her another question and again she responded "yep". She was standing so straight and tall today and seemed to have great balance and strength. At the end of her appointment she ran down the hall. I said "Gracie, say goodbye to Leslie." Gracie turned around from the other side of the hallway and in the biggest voice ever yelled "BYE". Everyone just cracked up, because usually Gracie talks quietly.

Tonight she was in the best of moods. She even ate applesauce with a spoon tonight all by herself and did really well. Both mommy and daddy are pretty proud of all of her accomplishments.

Love,
Lisa, Jeff, and Gracie

Thursday, November 26, 2009

Happy Thanksgiving

From the minute Gracie woke up, I knew it was going to be a great day. She was happy and smiley and just in a great mood. We got her dressed up in her Vikings Favre jersey and some black yoga pants and she was ready for visiting. We headed to my parents' home to spend the day with them. Gracie enjoyed the undivided attention of her grandparents, aunts, uncles, and cousins. She was agreeable, talkative, and smiley.
She enjoyed Thanksgiving dinner immensely. I think the favorite was Aunt Sheila's stuffing. She enjoyed potatoes and gravy, turkey, and a bun. She wasn't too sure of Aunt Arlene's cranberry apple salad, oh the face she made was hilarious. Yet, she did open for bite two. Gracie and I also shared a piece of Aunt Arlene's lemon pie. The smile on her face when I handed her one of Aunt Cheryl's buns (no jokes please) was priceless too.
Gracie and daddy retired to the den for a 45 minute nap and that refreshed Gracie enough to keep going strong for the rest of the day. She enjoyed Grandma B's homemade turkey dumpling soup for supper and enjoyed sticking her fingers in the frosting of Grandpa B's birthday cake.
Gracie fell asleep in the car about half way home, awoke when we got home, but quickly fell back to sleep again. I think all the activity wore her out.
I am so thankful for Gracie's health this year...such a contrast to last year. I couldn't help but just sit back, smile, and thank God for this precious gift.
Love,
Lisa, Jeff, and Gracie

Wednesday, November 25, 2009

Tuesday & Wednesday

Sorry I didn't give an update last night -- we had a plumbing issue in the house that took all of my energy. Of all the nights not to give an update, last night shouldn't have been the one to skip. Gracie had an incredibly awesome OT appointment. She had so many successes. Absolutely everything she was asked to do, she did. Shapes were put in a shape sorter, with a little help on the direction, she excelled at targeted release, putting ball after ball through the pipe hole to the point she looked like she was getting bored because it was too easy. She helped take off her shirt, she danced and did the actions to "I'm a little teapot" with a little help. She washed her own hands with the appropriate rubbing action, she played basketball and would yell "go, go" everytime she was about to put the ball in the hoop. She walked up the steps to the slide, she pulled herself along on a scooter. We talked with both the OT and PT and they both feel that Gracie's appointments can be reduced to one a month with each of them. Both were so impressed with how far she has come and how her verbal skills are starting to take off. She was in a great mood yesterday too and hugs for all her friends at the desk area. Reducing her OT & PT comes at the right time as we have another speech consult coming up and I'm pretty sure they will be ready to add speech therapy to her therapy needs.

We headed to the prosthetic lab first thing this morning as Gracie's braces were causing too much redness. She never fusses about things like that because she can't feel things like you and I, so we have to be very good about checking her feet daily. They were able to heat and stretch her orthotics and put some thin padding in. They are stretched as far as they can go. If she has any more problems we'll have to get new ones. Didn't we just go through this?

Gracie was a little more tired and irritable tonight, yet she is still doing so much better in the evenings than even a month or two ago.

So on this evening before Thanksgiving we have so much to be thankful for. We are thankful to God for blessing us with this precious little girl and allowing us to raise her, teach her, and love her. We are thankful for you and all the prayers, good wishes, and support we receive. We are thankful for the teachers, therapists, doctors, nurses, clinical assistants, desk staff, and others who provide such great care to little Miss Grace. She has come as far as she has because we are surrounded by a village of people who care and are dedicated to Gracie and others like her. Just one year ago we were in a battle with intractable seizures that threatened Gracie's health, development, and well being. Just one year later we are seizure free. We are blessed.

May each of you be blessed with the love and support of those around you.

Love,
Lisa, Jeff, and Gracie

Monday, November 23, 2009

A Monday with Frosty the Snowman

Gracie had a restless night. A couple of times she just sat up in bed and leaned against the wall in sort of a stupor, stayed there for a few minutes before laying back down and going to sleep. Gracie awoke in a happy mood. We had to take the van in for an oil change so we dropped that off and both Jeff and I dropped her off at daycare.

I mentioned Gracie's love of Frosty the Snowman. It gets better, we pulled up to daycare this morning and they have a big blow up Santa and Frosty the Snowman on the front lawn. Gracie was so excited to see Frosty. Grins from ear to ear. Then we went inside to see the beautiful Christmas tree with beautiful white lights. Gracie loved it.

Gracie had a good day at daycare and made Thanksgiving finger puppets for her activity. They are fun..I'm thinking I should probably share and let her play with them too! :)

Gracie had physical therapy late this afternoon. Sandy worked on stretching her back and neck muscles. She wasn't thrilled about this. I also had Sandy look at Gracie's braces. We're seeing too much redness again. We're going to see if we can get them stretched out.

After physical therapy, we hopped back in the car to go get dad at work and drop him off to get the van. Gracie was in the best mood. We sang Christmas carols the whole time and she was dancing away. When we got home we took a walk a couple of houses down the street to see the light up Frosty. I wish you all could see her eyes light up.

Gracie ate a big supper and after she was done, she sat on my lap and ate off my plate using a big fork. She did quite well with it. Then it was bath time and then bed. She's quite restless tonight in her sleep though. Hopefully it will be sweet dreams for her tonight.

Love to you all,
Lisa, Jeff, and Gracie

Sunday, November 22, 2009

Sunday - Such a Good Girl

Gracie had a good night, although she was a little congested. She ended up sleeping most of it with her head laying on my stomach. This was fine until my bladder filled up. She was a snuggly girl. She awoke in a great mood and that was the theme for the day. Gracie was good for church and was just a happy girl. Jeff was gone all morning for his church services, so it gave us some good one on one time to work on skills. We did a lot of reading and singing.

Gracie came across three stuffed dogs that I had in a toy box tote downstairs that she hadn't seen before. She is in love with these dogs. She loves to carry them around. They are a good size and it was so comical to watch her this morning trying to carry all three around at once. She was bound and determined to do it. She would get two in her hands and then go for the third one and then one of the first two would fall. She worked at this for a good long time. I thought she would get frustrated over time, but she didn't. She just kept at it til she got all three.

Gracie ate a good lunch and then took her only nap for the day...that was only 45 minutes long. Then we headed to the shoe store as I discovered her toe was at the end of her shoes. So we got some new shoes for Gracie and headed to Best Buy. While daddy was researching technology, Gracie and I roamed the store. She was so proud of her shoes, she would walk down the aisle, then stop and touch her new shoes, then get up and walk some more and then down again to touch her new shoes. She was good as gold in the store and was thrilled to see the piano keyboards. Gracie has a great love of pianos. With all the threat of H1N1 going around and the holidays and a funeral coming up, I didn't want her touching anything so as not to pick up germs on her hands (especially since she is a thumbsucker), I didn't let her touch anything. She was really good with that and enjoyed looking.

Then we headed to Culvers and got a frozen custard treat, but I think we gave her more than her little system should have had and her tummy was bothering her a bit. Gracie has never been able to process cow's milk very well, we don't think it is an all out allergy, we know it's not lactose intollerance, so we're not sure what it is, but we try not to give her too much of that kind of stuff.

Gracie was full of kisses and hugs all day. She is becoming more and more affectionate. It's so much fun to be sitting on the floor and have her come give me a hug and a kiss.

Gracie was overtired tonight and had a hard time falling asleep. Now that she is asleep, she seems peaceful.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Saturday, November 21, 2009

Saturday - Time with Mommy & Daddy

Gracie had a good night last night and woke up about 6:30 a.m. Both Jeff and I had hair appointments this morning. His first and mine directly following, so we did a Gracie swap at the salon. Gracie was her charming self and beamed when they let her sit in the big desk chair. I did have a couple of the stylists look at Gracie's hair, it's so dry looking and I wanted to know what I should be doing...a cut? a different hair product? Essentially we're doing everything right, they said her hair was doing fine and that it takes a really long time for curly hair like that to look long. So I'll continue with the current routine. We need to be careful not to comb or brush it when it is dry as that causes breakage.

Gracie and daddy ran a few errands and then came home to play, have lunch, and take a nap. I'm told that Gracie was pronouncing the word down very clear this morning. Gracie and I hung out this afternoon and she was a very good girl. We took a walk around the long extended block. She made it very clear when her legs were tired as she just sat down on the sidewalk. So I gave her a piggyback ride part of the way. We came across some neighbor kids playing basketball and she thought that looked like fun and kept motioning with her hands overhead, kind of imitating them. Then we came to our neighbors house that has tons of Christmas lights and lawn ornaments. They had two of Gracie's favorite things...Rudolph the Red Nose Reindeer and Frosty the Snowman. Gracie fell in love with both and danced while mommy sang the songs. She didn't want to leave. So I let her just stand and look for awhile, then I told her we had to go bye, bye. She blew Frosty kisses goodbye. Later when we were telling daddy about it, she got a big smile and started dancing like she did when she was by Frosty.

Gracie walked up the steps all by herself today. Daddy was right there ready to catch her if she fell, but she did it all on her own. She is getting so strong and making such good progress.

She was a tired girl tonight and is now sleeping soundly...with daddy sleeping soundly right next to her.

Love,
Lisa, Jeff, and Gracie

Friday, November 20, 2009

Friday - A Sleepy Head

Gracie slept like a rock last night. She barely moved and when it was time to wake up, she didn't budge. I tried to sing her awake, I tried to gently nudge her awake, I turned the light on, and still those little eyes didn't even flutter. Finally I sang a peppy rendition of "Rudolph the Red Nose Reindeer" and those little eyes fluttered open and there was a big smile on her cheeks. She loves that song. That is the song I sing her to sleep with too...the only one she will ever allow me to replace it with is "Frosty the Snowman".

Gracie's verbal skills are improving every day. I'm hearing jabbering sounds that I haven't heard before and she repeats so many words. Tonight she signed and said "ban" for a banana. Tonight all three of us were laying on Gracie's bed, just talking and resting and Gracie was looking into my belly button. I asked her what she saw in there, she just smiled. I said is it "dirt" and she got a big smile and plain as day said "dirt", which caused her daddy to laugh out loud, which just egged her on.

She is such a tease at times. At night before bed, I put vaseline on her cheeks and chin as they get so chapped from her drool and the cooler weather. She doesn't really like when I do this. Tonight I sat down beside her and wasn't paying attention to her. She went to get away from me, but I didn't notice right away, so she peeks around to see if I was watching, then when she caught my eye, she smiled and made to get away again.

Gracie fed herself applesauce with a spoon tonight. She did quite well. It's not quite fast enough for her liking though, so after a few spoonfuls, she resorted to tipping the bowl up to her lips.

Gracie was a tired girl tonight and is now fast asleep.

Have a great weekend.

Love,
Lisa, Jeff, and Gracie