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 - 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

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

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

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

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 - 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 - 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 - 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

Thursday - No Time for a Nap

Gracie awoke this morning as a happy girl and hung out with mom and dad this morning for a bit as daddy was on late shift. I think it threw her routine off a bit though as she was a little less cooperative with putting on her coat, wanting more attention, etc.

Daddy took Gracie to daycare and two of the other kids immediately noticed the gash by her eye and wanted to touch it. It still looks sore and she will still point to it and say "ow". Gracie's routine was a little off at daycare today too, so she only took a 10 minute nap. She was one tired girl when I picked her up.

I gave her a little more TLC tonight and she was a pretty happy girl. She was asleep by 7:30 p.m. and I don't think she has moved since daddy put her into bed. It's been a little too quiet at our house tonight with such an early bedtime.

Love,
Lisa, Jeff, and Gracie

Wednesday - Sensory Integration Appointment

Gracie had a great night and only woke up once in the night coughing. She went right back to sleep. I think it must have been the new pink fleece jammies she wore to bed last night. She was in a great mood this morning and was a total tease. When it was time to leave for work and daycare, I said "who wants to go bye bye with mommy?" She was already in her coat but she just smiled and decided to hang out across the room as far from mommy as she could. I asked the question again. I could see a smile on her lips, but she wasn't budging. So I tried the "Bye Gracie" tactic, like I was leaving. She hung back, then I asked her if she was teasing mommy. She laughed, came running, and jumped into my arms.

Gracie was in a happy mood at daycare when I dropped her off and was busy running from here to there. Jeff picked Gracie up at daycare at 2:30 p.m. and I met up with them at the hospital. Gracie had a follow-up appointment with the occupational therapist who specializes in sensory integration disorders. We shared with her how much better things are going and we had a very good appointment, learning so much. Toward the end of the appointment, Gracie, who was playing so nicely, fell on a walker and got a nasty little cut right by her eye. Gracie usually has a pretty high pain tolerance, but this one hurt and oh did she cry. Looking at it tonight, I question if we should have gotten a stitch put in it, but too late now.

Gracie was very interested in looking at her owie all night and would tell us "ow". She even signed "hurt" and pointed to it without any prompting.

Gracie splashed like crazy in the tub tonight, but was a very tired girl and indicate she wanted to go to bed at 7:45 p.m. She's been coughing a bit.

Love,
Lisa, Jeff, and Gracie

Tuesday - PT

Gracie didn't want to wake up this morning. I had a heck of a time trying to get her to wake up. Once she finally did, she was in a good mood. She was just plain silly when we got to daycare.

Jeff picked Gracie up at 3:30 p.m. and headed to the clinic for physical therapy. By the time I met up with them, Gracie was giving hugs to the clinical assistants and was "helping" them with their jobs. She was excited to see Leslie her PT and was very cooperative. She worked hard and is showing a lot of improvement and increasing strength. A couple of the other PT's even commented on how good she is doing. Gracie didn't get to do the treadmill today and decided she wanted to at the end of our session, but it was too late. Well that set off a firestorm of a tantrum that lasted on and off until we got home. So to any of you who may have saw us in the parking ramp, we apologize for the screams. Gracie's, not mine.

Gracie had a good evening, but was very tired. However, when it was time to go to bed, she suddenly became awake and playful. She is sleeping now and I think I will go join her shortly.

Love,
Lisa, Jeff, and Gracie

Monday

Gracie's great-grandmother passed away today. I know she was welcomed into heaven with open arms. She was a beautiful women who always thought of others first, she was humble, loving, and a person you just admire. It is a blessing that her struggle with bone cancer has ended, but I really wish that Gracie would have been able to get to know her better. I will do my best to make sure she knows about her. We had the pleasure of visiting her recently. That visit is cherished.

Gracie had a pretty good night, although her and I both have these weird dry coughs that wake us and are irritating. At one point during the night Gracie had a big belly laugh. It woke me up and I was surprised to find her fast asleep. This happened a second time. I'm thinking that must have been some dream.

Gracie's OT and early education teacher from the Birth to Three program came to play with Gracie this morning. Gracie was not interested in putting pegs in the peg board. She didn't even feign interest. She was very verbal and also signed alot while Emily and Michael were here. She was in a great mood.

Gracie made the cutest American Indian hat with feathers at daycare today. She'll be modeling it on Thanksgiving. :)

Gracie was very tired tonight. She fell asleep in about two seconds.

Love,
Lisa, Jeff, and Gracie

Sunday

Gracie slept in til 7:30 a.m. this morning and both her and I are on the mend. We now have that dry cough that gets you when you least expect it, but other than that we can deal with it.

Gracie had a good day. We put on a new shirt today that has a monkey on ice skates on it. It's this big character monkey with a huge smile. Gracie loves it. I told her the monkey says "ooh, ooh", so she stood in the full length mirror for a couple of minutes admiring the monkey and saying "ooh, ooh".

Gracie's new word of the day was "frog". She was watching her Signing Times DVD and there was a frog and she said the word rather than signed it.

Gracie went to try on her flowergirl dress today. She will be a flowergirl in her cousins (my Goddaughter's) wedding this coming summer. She loved the dress and you could tell she felt very special in it. It didn't hurt that the store had mirrors everywhere and Gracie LOVES to look at herself in the mirror.

We also went to Target, my home away from home, and stocked up on some groceries and necesseties. Gracie enjoyed that outing as well.

Gracie only had an hour nap today and was very tired tonight. That was until it was time to go to bed, then she had a hard time falling asleep. She is very restless, but is sleeping now. I'm hoping for a good night for her.

Love,
Lisa, Jeff, and Gracie

Friday & Saturday

Sorry I didn't post a note last night - I've been feeling under the weather and went to bed with Gracie at about 8:00 p.m. Gracie and I both have ear aches and dry coughs. I also have a sore throat and it feels like an elephant is sitting on my chest. Gracie was a little wheezy this morning, but it got better through the day. Gracie had a rough night and had one of her mondo bloody noses at 3:00 a.m. I caught it early, so it didn't get all over like it has in the past. I did get it on my shirt and Gracie had it on her sleeves too. Rather than waking her too much, I left her in those jammies til morning. So when she awoke that was the first thing she noticed. She has been working on the word "dirty", but she now has that one down pat. She would point at her sleeve and mine and say "dirty". We finally awoke for the day after 8:00 a.m., but it wasn't a restful sleep for either of us.

Gracie was in a great mood all morning. Unfortunately due to whatever ails us, we didn't get to attend Catholic Charities Adoption Day Celebration. We've missed due to sickness three years in a row. Jeff did perform magic at it though.

Gracie amazes me with her ability to follow simple instructions, she understands so much more than what she can say. Although the verbal skills are coming along nicely. Today she told me "out" when she wanted to get out of the tub. She told me "off" when she wanted the cover off of her drum. She also has a nasty habit of changing the channel on the TV and then getting mad when he program isn't there. She usually starts to get very upset and whine. I had taught her that instead to come and get mommy's hand and take me to what she needs. She got that down, so I've been working on the sign for help...well she did one better, she says "help" and signs it.

Gracie took a restless afternoon nap and was a little more moody this afternoon. I think her ears were bothering her quite a bit, as were mine, so I gave us both some Tylenol and that helped quite a bit.

It was a fairly low key day of reading, singing, dancing, and taking walks around the house. Gracie loves it when both Jeff and I are here. She takes a hand from each of us and leads us around the house. Today we told her that this was a family walk. Well she now can say "walk".

She is asleep now and I'm hoping for a restful night for both of us.

Stay healthy.

Love,
Lisa, Jeff, and Gracie

Thursday

Gracie had a good night last night and so did I. She awoke in a good mood and we had some time for snuggling.

Jeff is working a conference with long hours today and tomorrow, so I am on daycare drop off and pick up duty. So Gracie was the last child at daycare today and she was mad because she doesn't like to be the last one there. I think she is going to be mad at me tomorrow too. Thankfully she was in a good mood this evening.

She did not want much for supper tonight, but did gobble her loved yogurt right down. The first thing she did when she got home is decide the toaster did not belong on the counter top. She has such long arms she can reach everything. We hadn't pushed the toaster back on the counter this morning, so tonight she pulled it down by the cord. It was an explosion of toast crumbs in my kitchen.

Gracie enjoyed her bath as usual and was very ready for bed. She is sleeping very peacefully.

One year ago today Gracie was diagnosed with Infantile Spasms. She has been I.S. free for 10-1/2 months. We know there is still a chance for recurrence, but the longer we remain I.S. free, the more the likelihood that they don't return. I still watch her like a hawk and probably always will. We have come so far in this last year. We thank you all for your prayers and support over the last year. Your kindness has meant more to us than words can express.

All our love,
Lisa, Jeff, and Gracie

Wednesday

Gracie had a good night and awoke at 5:30 a.m. this morning. Her eyes look so much better! The prescription meds really are doing their job.

When I dropped Gracie off at daycare she wasn't sure she wanted to go in as she had to walk by a running tractor/snowblower and it was too loud for her ears. I think Gracie was happy to be back at daycare. She did two projects today. One was an alligator puppet. It is the cutest thing and she was all smiles when she showed it to me. Daddy picked Gracie up tonight at daycare and she was outside enjoying the day.

I got home a little later than usual and she was all smiles and happy to see me. It was a good night at our house. Gracie was in a really happy giggly mood. Her accomplishment of the day was saying the "g" sound. She has been saying go, but the "g' has not been pronounced very well. Tonight she got it and was really pronouncing it. Yay!

Love,
Lisa, Jeff, and Gracie

Tuesday Hookie Day

Today was a day to play hookie from daycare again - and this time dad stayed home with Gracie. She slept in a little later today & did not have any of that crusty gunk holding her eyes shut this morning. Apparently the eye drops are worth all of the effort of holding Grace down and getting hollered at.

We had a pretty good day today. Grace and I (Jeff the dad) listened to alot of music today and danced all around the house. We read books and watched a little TV too. One nice thing about staying home, is that we get to watch "Sid the Science Kid" on PBS. It is a Brian Henson (son of the late Jim Henson) production and is one of the "smarter" kid shows on TV (yet still geared for little kids, so if you are 30 - 40, you will still find some, "oh yeah, right" sections - that's the way it goes). Grace and I both enjoy it greatly - so that gives us something to look forward to in the morning.

We also read alot of books and magazines. Grace loves to take the "Toys R Us" (or similar) sales flyer and read it like a news paper. She will sift through the pages over and over, and she thoroughly enjoys it. So - we read the "Toys" flyer, as well as Target's and others, many times today.

One big thing today was that while Grace was dancing - it was more of a march than dance actually - she just paused, holding one foot off of the ground. That was the FIRST time that ever happened. I was so excited I think I startled her when I say, "Way to go, dearie!" Her one foot balancing act didn't last long - perhaps a second, but it was solid with no wobble or tipping. I can't wait to tell her Physical Therapist next week when we see her.

Lastly - we finished off the day with a bath. That was great fun, and - as usual - in the end there was more water on mom, dad, and the floor than there was left in the tub. She loves to splash and has gotten quite good at heaving water in all directions.

At the end of the day, Grace was one tired little girl. She is now resting comfortably, and the rest of us will soon be following suit.

Have a great night and a great Wednesday.

Love,
Jeff, Lisa, and Gracie

Monday - Pink Eye

Gracie had a terribly restless night and awoke for the third day in a row with her eyes glued shut with eye gunk. I initially thought she had a cold in her eye, but after the third day, there had to be more going on. So I called her pediatrician's office to make an appointment. I was not happy about having to take her in where there may be flu germs hanging around from other patients. I was pleasantly surprised when they told me that rather than coming in, they would have a nurse triage us. It was great! We went through the symptoms and sure enough they were convinced it was pink eye. They called prescription drops in at the pharmacy and she must be on them 24 hours before she can go back to daycare and not be contagious. So I stayed home with her today and Gracie and daddy will hang out tomorrow.

Do you know how hard it is to singly hold down a 37 lb child to put drops in her eyes? Well I have it perfected now, as we have to give drops every three hours.

Other than having pink eye with very itchy eyes and a cold, Gracie was in a great mood. She took a 2 hour and 15 minute nap at 11:00 a.m. this morning and we spent a good part of the afternoon outside taking walks and riding our tricycle. It was a beautiful day and as long as we couldn't go anywhere or be around other people, we took advantage of the fresh air.

Having slept so long this morning into the afternoon, I chose not to have Gracie take a late afternoon nap. I think I may have made a bad call on that one. She was way too tired this evening and everything seemed a little worse than it was. She didn't even enjoy her beloved bath. She had a hard time falling asleep tonight too as she was just plain overtired.

She's resting nicely now.

Love,
Lisa, Jeff, and Gracie

Sunday - Pedalling My Tricycle

Gracie awoke bright and early at 6:00 a.m. She woke me up and made the sign for airplane. She loves when I sign airplane and have the airplane come get her tummy. Guess she was in a playing mood.

She was in a great mood all morning and we sang and danced and even watched Mickey Mouse Playhouse (a huge favorite of hers). She was good during church and afterward took over a 2 hour nap. She awoke at noon and was in a good mood. She ate a good lunch and then we headed outside to enjoy the beautiful day. The minute she got out there she did a dance of joy and couldn't walk fast enough. Obviously a girl who needed some fresh air. We walked around our extended block, then got out her tricycle. She can make it go backwards, but hasn't been able to make it go frontwards, even though we've worked on it over and over again. Well today she put her foot on the pedals and started pedalling. YAY GRACIE!!!!! She doesn't quite have the strength to go far, but we have a handle on the back of the tricycle that I can help with that while she gets the leg coordination going. She was very proud and so were Jeff and I. Then we went for a longer walk with Gracie in her wheelchair. She sang and talked the whole way. She would point things out to us, like trees and pumpkins.

She did not want to come in the house. She took a short afternoon nap and had a hard time snapping out of the tired grumpy mood this evening. She had some very happy moments and some very sad moments all throughout the night. Music is definitely her mood lifter, so we did lots of singing and dancing. Gracie and Daddy even did some dancing to Michael Jackson music.

To those of you who know Jeff well, you know that when music is on, he is always drumming his hands on the table or the back of a chair or whatever is in front of him. Well like father like daughter. Gracie was eating a snack at the table today and we were listening to music. All of a sudden she was drumming on the table.

Our other excitement of the day was Gracie saying "thank you" verbally. She knows how to sign it, but today she actually said it. I said it and she repeated it.

She is now restlessly sleeping. I better go and cuddle with her.

Love,
Lisa, Jeff, and Gracie

Saturday - Mommy and Me

Gracie had a restless night and awoke at 4:15 a.m. She had wet her diaper, her pajamas, her flannel sheets, and all the way through to the mattress pad. Once I got everything cleaned up, she was still wide awake and decided she would not be going back to sleep. She was in the best of moods and stayed that way all morning. Jeff had to work today, so it was just us girls.

I had hoped with the early wake up time, Gracie would take a morning nap...she did...but only for 15 minutes. I put her back down at 12:45 p.m. and she slept til 1:30 p.m. and was super grumpy and acted tired, so I finally got her back to sleep about 2:00 p.m. and she slept til 5:00 p.m. We never even got outside to enjoy the beautiful day.

Gracie seems to comprehend more and more every day. She turned off the tv when I asked her to at bath time. I asked her to go get a diaper...and she did...she got three, but then decided it would be more fun to run away. She also has a name for herself...Me or sometimes it is Mea. Tonight she was hugging Jeff and I alternately and when she was giving me my hug she said "Mea and Mommy". It was so sweet.

We also had a huge success today with targeted purposeful release.

I'm looking forward to more fun tomorrow.

Love,
Lisa, Jeff, and Gracie

Friday - Grumpy Girl Turned Happy

Gracie was a little grumpy grundy this morning. Nothing was quite right. She would have been fine if mommy could have just held her all morning, but there was not time for that. When I dropped her off at daycare she was a little clingy, but sooned warmed up and was happy and moving and running and having a good time.

Gracie made a weather wheel at daycare for her project of the day. It is so cute and once again we had a proud girl when she showed it to us. Jeff picked Gracie up at daycare and they spent a little time outside when they got home.

Gracie was in the best of moods tonight. She was happy, cooperative, and just a joy to be around. She told me it was bed time tonight. I was singing one of her go to sleep songs. She climbed up on me and insisted I bounce and walk with her, which puts her right to sleep.

I'm going to join her shortly.

Love,
Lisa, Jeff, and Gracie

Thursday - Short and Sweet

The blog tonight will be short and sweet as we all have colds and are tired. Gracie had a great night last night and for the first time in like forever, I slept for 5 hours straight without waking up. It felt incredible. Miss Grace was a very peaceful sleeper.

She was a happy girl all day and into the evening. She was an absolute joy to be around. Lots of smiles, lots of music, lots of dancing. She is trying to imitate fingers snapping. It is so cute to watch her try.

We are all headed to bed to see if we can kick these colds.

Stay healthy -- there are lots of bugs going around.

Love,

Lisa, Jeff, and Gracie

Wednesday - Visiting

Gracie had a good night and awoke while I was in the shower. She had big smiles when I came out of the bathroom and was in a very good mood. Daddy headed to work and we started about our morning routine. Most mornings I snuggle with Gracie in bed for a few minutes before she gets up, but today that didn't happen. We got dressed and are in the living room when Gracie indicates she wants something, but I can't figure out what it is. As I do more and more frequently, I gave her my hand and asked her to show me. To my surprise she walked me into her bedroom. I bent down to give her a hug and she pushed me to lay on her bed. I layed down and she layed right next to me snuggling. That was what she wanted...a little snuggle time with mommy. After we got 5 minutes of snuggly time in, we were good to go.

Many mornings I fight with Gracie to get her to sit in her car seat while I strap her in. I think I may have found the fix to this. She wanted my car keys this morning so I gave them to her. She smiled and cooperated the whole while. I made sure to keep one car door open while I went to shut off the garage light. I hopped in the driver's seat and told her I needed the keys to drive. She handed them over willingly and away we went. Do you think it could possibly be that easy every day???

Gracie colored a pretty picture at daycare today and again glowed when I talked to her about it tonight. Jeff picked her up and the two of them went to visit Jeff's good friend, his parents, and his daughter...oh and his two cats. I'm told Gracie was a good girl during the visit and especially enjoyed the cats.

Grace was a very good girl all night long. The only struggle we had was when she didn't want to get out of the bathtub. The water was all drained and she would NOT get out. Any time we even attempted to lift her out, she would put up a huge fit. So we just left her in there for awhile.

Gracie was a very tired girl. She fell asleep before her head hit the pillow tonight.

Gracie has very red chapped cheeks and chin from the colder weather and the fact that she still drools. If anybody has any thoughts on what to do for it, I would love to hear them. I've tried Aveeno lotion and Cetaphil lotion. They help, but I'm thinking I may need something thicker...maybe I need to try Vanicream.

Love,
Lisa, Jeff, and Gracie

Tuesday - If Mommy Would Only Listen

Gracie awoke in a great mood today. She was smiles all morning. We sang on the way to daycare and it was a good morning.

Gracie's project at daycare today was the cutest cow. Once again when I told her how pretty it was and how proud of her I was, she just beamed. Jeff picked her up at daycare and zoomed back to the clinic for a PT appointment. Gracie is on the same floor every week and insists upon making the rounds to all of the clinical assistants to say "hi". They are so good to her there. They take her hand and take her for a walk. When Leslie, her PT came to call her in, her intern Jay was right beside her. We met Jay last week and Gracie really liked him. Gracie was across the lobby and she ran to say hello to Leslie. She quickly greeted Leslie and then went to say hello to Jay too.

Gracie has a great love of the sink in the big exercise room. It is a sink her size and she can stand up to it. For months we struggled to get her to realize she could go to the sink AFTER we were all done with her PT or OT session. She would have tantrums because that is all she would want to do. So we finally have her trained that she gets to use the sink, but not until we are all done. So today we are 15 minutes into PT and she goes toward the sink. We tell her no and redirect her. She signs "music", but I really don't pay attention. For most of the rest of her session she was extremely distracted and kept heading for the sink. Finally Jeff, I, and Leslie decide to call it quits, because the sink is the only thing that had her attention. So I finally tell her it is okay and she walks over to the sink area, but doesn't want it. She stops just short of it where there is a musical Winnie the Pooh toy that she wanted to play with. She didn't want the sink...she wanted the toy. So we took the toy back to the matt and Leslie and Jay worked with her for a good 20 minutes while she occupied herself with the Winnie the Pooh toy. Had I only listened to her when she signed music. We all were in disbelief.

Gracie had a pretty good evening, but was tired from her big afternoon work out. So we listened to music, read books, marched a little, and just snuggled. She was asleep by 8:00 p.m.

Love,
Lisa, Jeff, and Gracie

Monday - A Pretty Project

The time changes are so hard on little kids. Come to think of it, they aren't all that easy on parents either. Gracie had a very restless night and she was up bright and early at 5:00 a.m. Yawn! Of course, to her it was her normal 6:00 a.m wake up time. Gracie was a happy girl this morning.

Gracie had a good day at daycare and made a new project. It is the cutest picture of dolphins with a spinning wheel that makes the dolphins jump in and out of the water. Daycare has started a new activity program with the 2 years. I just love it. I think it introduces Gracie to activities she isn't always comfortable with, but is more willing to do in a group of peers. She is so proud of her artwork and projects when she shows them to Jeff and I. Jeff picked Gracie up at daycare today, so when I came home and they showed me her project, I was very excited and told her how pretty I thought it was. She just beamed -- she was so proud.

It was a nice day and Gracie and daddy played outside for awhile. When I got home they were downstairs in the family room dancing. I did get a big hug though.

Gracie was a wild girl in the tub tonight. Oh my goodness can that girl splash. Tonight Gracie wanted to see some videos on the computer and the computer was taking a long time to turn on and load and she had a major meltdown. I tried a couple of new techniques in trying to calm the situation and let me just say I failed miserably on all attempts. I know that it is worse to remove her from the room....I know that it is worse to raise my voice to try to get her attention when she is in a major tantrum...I did learn that I have major amounts of patience to keep learning and trying to find out the best solutions that will work for her. We'll get it figured out...it's just a learning process all the way around.

Gracie was a very tired girl tonight...again this time change has messed with her body clock. Mine too!

Sweet dreams to all.

Love,
Lisa, Jeff, and Gracie

Sunday - Mommy & Daddy's Undivided Attention

Gracie had a great night. That fresh evening air must have been just what the little munchkin needed. She awoke at 8:00 a.m. this morning...well with the clocks being turned back it was actually 7:00 a.m. I think she knew mommy and daddy needed it. We all have been fighting sore throats, the kind that you sort of feel and then they go away and if you don't get enough sleep you start to feel them creep back.

After showers, church, lunch, and an hour nap, we headed to the mall to pick up a winter coat for Gracie...one for later in the winter should we need it. Gracie grows so fast that we figured we had better buy one a couple sizes bigger than what she has just in case. We didn't stay long, but it was a nice outing for Gracie.

When we got home it was so nice out that we all took a walk around the block. Gracie got a ride on daddy's shoulders for part of it, but did quite well on her own. She loved when we would run. The child was out of breath from running, yet when we would stop she would sign that she wanted to run "more". Gracie and I went to play on our back deck for awhile while daddy ran to the grocery store. Then we came in and danced and watched her "Signing Times" DVD while I got some laundry folded.

Gracie's new signs for the weekend: cereal and banana. Gracie got a lot of mommy and daddy time today. She loves undivided attention. Gracie and I played chase this evening. That got some good giggles and laughs.

Gracie is now enjoying her brand new flannel sheets that I put on her bed today. She loves the feel of them on her hands. She snuggled right in.

I'm attaching a picture of Gracie enjoying her Halloween chocolate.

Love,
Lisa, Jeff, and Gracie

Sunday - Mommy & Daddy

Saturday - Trick or Treat

I awoke at 7:10 a.m. this morning to little fingers poking my face. It felt great to sleep in. We scurried around this morning to eat breakfast, get showers in, and head to the clinic for Gracie's H1N1 vaccination. She came down with a cold on Thursday and still has quite a bit of drainage from her nose, so I was worried they might not give it to her. When they heard she had a cold they screened her for the injection. When they mentioned that they didn't have any shots without thimerosol, I had them screen her for the FluMist and we went with that. I hope we got some in her. She didn't cooperate and with her runny nose, it makes me a little nervous. Thimerisol is the preservative that some have mentioned may be linked to autism and other disorders. The studies were all flawed, so I really don't think I would have issue with it for a normal healthy child. Gracie's I.S. is thought to be possibly triggered by her MMR or Pertusis vaccinations. I just think a child predisposed to health issues needs to have special attention taken to these things. We go back after 28 days and will get a second H1N1 vaccination for her.

Gracie got to see her Birth-to-Three teacher at the clinic. I think she was confused that Emily was there, because that is not where we see Emily, she comes to our house. Gracie got some ghost stickers after her vaccination. That was a hit. Gracie LOVES stickers. They are used to reward good behavior at our house.

Gracie was a little more needy today. She wanted to be held alot and was quite whiny if she didn't have one or both of our undivided attention. She had some great moments too, but definitely needed a little more TLC. I rocked with her for awhile and she enjoyed that. She took a 75 minute nap this afternoon, but it should have been longer. We tried to lay back down later in the afternoon and she did rest, but never fell asleep.

I think I don't always give Gracie credit for getting as much as she does. I was not going to take her out trick-or-treating tonight because I just didn't think she would "get it" and I didn't want to expose her to any flu germs. Gracie made it known after the first trick or treaters showed up that she wanted to be outside where all the fun was. So we put her coat and mittens on and pulled her adorable lion costume on over everything and she traipsed outside enjoying the cool night air. She trick-or-treated at two houses -- thank you Diane and Nancy for treating our little lion to goodies and Bridget delivered goodies -- thanks Bridget. At Nancy's house she got to see Annabelle the dog...Gracie loves Annabelle. She also enjoyed Marti and Alvin's pumpkins and stood on their front steps enjoying the pumpkin lights.

When Gracie's cheeks got too cold we talked her into coming inside with promises of watching her video of Gymbo going to the Zoo. After that she got to eat some chocolate and then it was bed time. She was little smiley lovey girl when it was time to lay down. Oh that smile melts my heart.

She is now sleeping soundly after a very busy day.

Happy Halloween and for those of you on Daylight Saving Time -- don't forget to set your clocks back an hour.

Love,

Lisa, Jeff, and Gracie

Friday

Gracie awoke at 2:00 a.m. and was wide awake and in a great mood. Mommy was not wide awake, but enjoyed all of the smiles. I decided I would walk and bounce with Gracie, which is how she is comforted. So her head is on my shoulder, I'm singing her sleepy song "Rudolph the Red Nose Reindeer" and I end the song and she is extremely snuggled in and still. I am just sure she has fallen asleep, when I hear her little voice make a pretend snore sound...and then she does it again and again. We do that to her sometimes when we are pretending we are sleeping. I had all I could do not to laugh. She finally fell back to sleep at about 3:00 a.m.

Daddy took our little lion to daycare this morning as they could wear their Halloween costumes. I was disappointed to find out that Gracie was the only kid this year that dressed up. Last year all of the kids did. I picked Gracie up at daycare, and she was having fun as she had Barb and Papa all to herself.

Gracie was a little whiny tonight if things didn't go her way. She did enjoy her bath immensely. She didn't do much splashing. Today she decided it was more fun to lay on her stomach and swim in the tub. She is so tall that when she is all stretched out, she is longer than the tub.

Gracie was more than ready to go to bed tonight and fell asleep quickly. Tomorrow we get her H1N1 vaccination. She has a few sniffles, so I hope they still give it to her. As always with vaccinations, I'm a little nervous, as we are pretty sure that some of her 15 month vaccinations are what started her infantile spasms a year ago. I'm still very pro-vaccine, I just won't ever give her more than one at a time.

If you have any extra prayers, please pray that Gracie does okay with the H1N1 vaccination. Thank you!

Love,
Lisa, Jeff, and Gracie

Thursday - A Great PT Session & A New Friend

Gracie had a great night. Not sure if it is because she slept with her feet in my stomach all night, or if it was because she was really really tired. She awoke while I was in the shower, when I came out to greet her she did not have a smile to share. So I scooped her up, took her back to bed, and snuggled with her for a little bit. She needs that morning snuggle to put her in a good mood.

When I dropped Gracie off at daycare she was in a great mood, running back and forth and just being goofy. Jeff picked Gracie up at daycare in the middle of snack time, so they grabbed her snack and headed back to the clinic for PT. Gracie had a great PT session. For my regular readers, you may remember a couple of weeks back I mentioned how Gracie is growing and her legs were getting tighter and she was losing her balance. Well this last week that has really seemed to improve. Gracie's PT, Leslie, commented on how great and loose her muscles and joints were -- all those stretching exercises we are doing with her are paying off. Gracie had two huge successes today. They got her to go up on her tippy toes without holding onto anything and when running while holding onto Jay, the intern PT, her feet left the ground for a mili-second. Gracie is getting so much stronger. Before her appointment the clinical assistants who treat her like a princess, gave her a beautiful white teddy bear, and after her PT appointment she got a Tinkerbell Sticker AND a bag of M&M's for Halloween. I am so thrilled to see her get stronger and stronger everyday.

By the time we got home she was one tired girl. I think she was just exhausted from her workout. So we made it a pretty low key night. We did get our first trick-or-treater....our friend Laurie brought her son Logan over as he was trick-or-treating at a local nursing home. Gracie wasn't too sure what to think of him at first, but started to warm up to him. Then Logan, who is 5, read her a book...from there on out he was her new friend. He was so good and gentle with her.

She was one tired girl when I put her down to sleep and now this tired mommy is going to go kiss her forehead and go to sleep.

Love,
Lisa, Jeff, and Gracie

Wednesday - Please Don't Wake Me Up

Gracie had a great night, she slept very soundly and when it was time to wake up, she wouldn't. I could not get her to wake up for anything. She would flash an eyeball at me occasionally but go right back to sleep. I even turned the light on in her room and still she wouldn't wake up. Finally she awoke while I was dressing her. She was a very happy girl upon waking. Must have got some good rest.

When I dropped Gracie off at daycare she was having a great time. She would run from Barb to the gate where I was to head out. Then she would run back to Barb. She kept doing this over and over again and laughing the whole time.

Gracie wasn't too hungry for supper, but did help mom eat some of her Chinese food. Gracie was in a good, but tired mood tonight. She had a good time in the tub.

Tonight when it was time to go to bed, Gracie became a kissing machine. She just kept giving me kisses and kisses and kisses. So sweet. I told her thank you and then she signed "thank you".

She is sleeping peacefully.

Love,
Lisa, Jeff, and Gracie

Tuesday - Drinking Out of A Big Glass

Gracie had a good night last night and daddy snuggled in with her while I took a shower this morning. When it was time for Jeff and Gracie to get up, they looked so sweet, snuggly, and peaceful, that I didn't want to wake them. Gracie thought it was great fun to steal daddy's bagel this morning before he could put it in the toaster. She claimed it as her own and roamed the house munching on it. She did good until she took a huge bite. It was just too big for her to manage and when I pryed it out of her mouth there were big crocodile tears that I took it out.

Jeff dropped Gracie off at daycare this morning and she was happy to see everyone. Jeff also picked her up and she was tired and didn't give him the time of day. However, when I got home I got a very happy greeting. We always tell Gracie who is going to pick her up and I was supposed to today, but due to a change of plans, Jeff did. Does she remember this stuff or is she too young? I have no clue.

At supper tonight Gracie insisted upon drinking out of mommy's glass. It is a smaller glass glass and although it makes me a little nervous, she does really good with it. The pride on her face is priceless.

Gracie and mommy danced around the house tonight and that was great fun, but she was tired and so a few minutes before 8 p.m. I layed in bed with her. She suddenly got a second wind and was just the happiest giggliest girl. She finally settled down and is now sleeping peacefully.

Love,
Lisa, Jeff, and Gracie

Monday - BZZZZZZZZZZZZZZZZ

Gracie had a pretty good night, but occasionally would cry out in her sleep. She never really woke up, but definitely moved around a little more than usual. She awoke way too early -- abour 5:15 a.m.

Gracie's early education teacher and OT from the Birth to Three program came to meet with Gracie this morning. Michael, the occupational therapist, worked and played with Gracie while Emily, her early education teacher and I went through an assessment of her skills. Although there are still alot of areas we need to work on, it was fun because we've seen alot of progress too. You don't realize how much until you sit down and actually start assessing each thing. It also makes me aware of the things we really need to work on, but truthfully they were of no surprise to me.

When I dropped Gracie off at daycare she was looking mighty tired, but the energy of all the other kids and the music revved her up a bit. Jeff picked Gracie up at daycare tonight just as the "big" kids were going outdoors to play. So when Jeff and Gracie got home, they played outside for awhile too.

Gracie was tired tonight, but happy. I read her a book about a pig tonight and there is a bee in it. When I got to the bee, she made the sign like an airplane and said "BZZZZZZZZZZZZZZZ". I about fell over, Jeff nor I have made that sound or sign for the bee. I was reading the book to her this morning and she didn't say it. So I have no idea where she picked that up, but it made me proud.

We also took straws into the bathtub tonight to get Gracie to work on oral strengthening....she was able to blow bubbles through the straw into the water. YAY!!!

Gracie was more than ready for bed tonight. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Sunday is a Fun Day

Gracie slept in this morning til 7:30 a.m. She was a happy smiley girl and that was the theme for today. Happy, funny, content, and giggly. As long as music is playing in this house, Little Miss Grace is a happy camper. If mom or dad happen to be dancing with her while the music is on...it's even better. At one point today I was dancing and just being silly with her and she found it extremely fun and hilarious. She would giggle and giggle and giggle. When I went to hug her after the song was over she gave me a huge hug and then a big kiss on my cheek. Kisses are far and few between from Gracie, so I must have really deserved it.

Jeff was preaching at a church in another town, so Gracie and I stayed home and watched church on TV. She was very good during this with the exception of putting her shoes in her mouth and the more I told her how yucky it was, the funnier she thought it was.

Gracie ate a good lunch and was looking pretty tired since she didn't have a morning nap. We went to lay down and all of a sudden she had a second wind. Oh was she just a happy funny girl. She finally fell asleep at 1:00 p.m. and slept for an hour and a half.

Upon awakening we headed to Target for a family outing to get a cartload of necessities. Gracie was only to happy to help hold things, as she and daddy tooled around the store in her wheelchair. I didn't realize how late it was and when I went to put some crackers in the cart, Gracie had a fit that she wanted some...she really was hungry. So we had those rung up first and then Gracie and daddy had a little snack while they ran the rest of our stuff through.

When we got home our neighbor Nancy was taking her dog Annabelle out for a walk. Gracie loves Annabelle (who is super mild mannered), so that made her day.

Gracie decided supper was not to her liking tonight...I made baked chow mein. I think it was more about just being full from a late snack then truly not liking it. She was tired this evening but happy and hilarious. Both Jeff and I agreed that it was hard to put her to bed tonight, because we just wanted to continue playing with her.

We hope you all had a good weekend.

Love,
Lisa, Jeff, and Gracie

Saturday - Hanging with Mom & Dad

Gracie had a good night and even slept in til 7:00 a.m. What a treat! She awoke in a great mood and stayed that way throughout the day. I made chocolate chip muffins for breakfast and they were a big hit.

Our day was filled with reading, dancing, playing with toys, and Gracie taking mommy and daddy by the hands for walks around the house. She loves to do this and it has to be both of us. We also put the fireplace on downstairs to warm up the house a bit and Gracie was enthralled. I don't trust her at all to leave it alone. She knows it is "hot", but the temptation of the bright flickering flame it just too great.

Gracie was a good helper with laundry. Her primary job is opening and closing the dryer door for mommy. We got a lot of laundry done today.

I also made some cinnamon streusel bread that was a hit and Jeff and I (mostly Jeff) made some homemade chicken noodle soup. Both were well received.

Gracie took a morning nap and an afternoon nap, so she wasn't ready to go to bed until about 10:00 p.m., but I didn't really mind since she was in such a great mood. Just more time for us to play.

It was a great day of just hanging out at our house.

Love,
Lisa, Jeff, and Gracie

Friday - New Words

Gracie woke up and was a very happy and snuggly girl. She couldn't wait to watch Mickey Mouse Club House. That makes getting her dressed much easier for me too. She concentrates on that and doesn't fuss as we change clothes. The transition of changing her clothes is still one of her biggest issues.

Gracie was a good girl in the car on the way to daycare and we sang songs. It was raining at a pretty good rate when we got out of the car and Gracie was all smiles when she felt it hit her face. She liked that mommy ran from the car to the house too.

Jeff picked up Gracie at about 4:00 p.m. and came home in the snow. We had an inch or two of really sticky wet snow, so Jeff made a snowball and gave it to Gracie in her hand. She loved it and held onto it for about 5 minutes.

When I got home Gracie was in a great mood. She greeted me at the gate with a huge smile and she was a happy girl pretty much all night. She also had some new verbal words for us tonight. Jeff was reading her a book with a cow in it and he was telling her that the cow says "moo". She said "moo" and then kept turning back to that page so she could say "moo" over and over again. She was so proud of herself for saying it too. She kept looking back at me and smiling to make sure I heard her and gave her the appropriate encouragement and cheering. She also signed milk to tell us that is what the cow makes. I have been trying to get her to say moo for months and it finally clicked. Then she wanted another book about sisters read to her. Jeff told her to bring the book over and she repeated "book".

Grace was smiling pretty much until she fell asleep! Ahhhh, I love days like this.

Love,
Lisa, Jeff, and Gracie

Thursday - A Visit to Great Grandma

Gracie had a great night and slept in til about 6:45 a.m. We got her dressed in a pretty pink and black dress and black leggings, put a barrette in her hair and put her in her car seat for a 3 hour ride to visit Great Grandma K. Great Grandma just moved to a nursing home as she has cancer in her bones and hip and cannot walk on her own. Gracie did good in the car on the way there til about the last hour -- then she got pretty ancy.

Gracie was in a very social mood today and enjoyed seeing Great Grandma, Great Aunt Ann and Great Uncle Denny. She also made lots of new friends with the residents at the nursing home. She helped push wheelchairs with people in them down the hall (for a while I thought they might put her on the payroll). She enjoyed visiting the fish (two aquariums full), the birds, and made friends with the resident cat, Sam. Sam was truly delightful and gentle. He rubbed up against Gracie's shoes. She thought that was great fun and then as he walked away, Gracie felt it was her mission to follow him. Gracie held some of the resident's hands. Some appreciated it, some did not. Gracie especially liked Mabel, Great Grandma K's roommate.

We all had lunch with Great Grandma at a private lounge area. My goodness did Gracie eat. She ate peas, potatoes, and all the meatballs from my plate. When she was done with those she started in on the meatballs that Great Grandma was too full to eat.

Gracie took a 30 minute nap on my shoulder while daddy did a magic show for the nursing home residents and staff. Gracie gave hugs to Great Grandma, Ann and Denny before we left. She also said goodbye to Mabel. I was so scared that Gracie would step on Great Grandma's feet with her big braces and shoes. Great Grandma is so fragile and thin, but enjoyed the visit with Gracie.

Gracie was so good on the way home until the last 40 miles. She screamed, cried, and hit herself in the face in frustration for the last 15 minutes. Nothing I did would console her. When we got home, I took her out of her car seat and just hugged and consoled her. After I got her calmed down I layed her on the bed to change her diaper and I said "Gracie, we're home!". She looked up at me with her big wet teary eyes and gave me a beautiful smile. She was happy to be home and move about. Of the six hours in the car, Gracie slept NONE of them. She was a tired girl tonight.

I'm a tired mommy too.

Love,
Lisa, Jeff, and Gracie.

Wednesday - Tired Girl

Gracie had a very good night. She did not want to wake up this morning, but once she did was in a good mood. She was very upset with me when I put her in her car seat this morning, but by the time we got to daycare she was dancing from it.

Gracie played shy once we arrived at daycare, but got over it pretty quickly. She had a good day and Jeff picked her up at 4 p.m., only to come home and have her fall asleep. She slept from 4:30 - 6:00 p.m. She awoke in a good mood and was in great spirits all night long.

I think I mentioned that Gracie copied me the other morning when I put my finger over my lips and said "shhhhhhhh". Tonight she was listening to music and I was talking to her. She looked up at me square in the eye, put her pointer finger over her lips and said "shhhhhhhhh" to me. My daughter shooshed me. She had a twinkle in her eye when she did it.

She sat for about 10 minutes just leafing through a magazine and tearing out pages here and there. She had a great time in the tub. Lots of splashing.

After bath she was playing downstairs. She had her pajamas on, but I hadn't gotten her socks on yet. It's cold in our basement this time of year. She sat down and signed "socks". I guess her feeties were getting cold. She was happy to have me put the socks on.

She didn't go to bed til about 9:30 p.m., but fell asleep very quickly. I have a feeling it will be an early morning for her.

Love,
Lisa, Jeff, and Gracie

Tuesday - Fun Visitors

Gracie did not want to wake up this morning. She was all snuggled in her prayer quilt that she got when she was suffering from I.S. This quilt by the way, just makes me smile everytime I see it. To know every knot tied on it represents a prayer that was said for Gracie. To know that love and caring came from such special people. When I see her wrapped in it, it brings me such contentment and joy. I just watched her sleep for a few minutes...ahhh such peace and innocence.

Gracie was a good girl this morning and we were running a little late, so we "marched" our way down the stairs to the garage to the car to make leaving a little more fun and fast. Gracie was a little clingy when we got to daycare, but that didn't last long. Soon she was waving me out the door and blowing me kisses.

Jeff picked Gracie up at daycare and then zoomed back to the clinic for occupational therapy. I don't look forward to OT as this is much harder for Gracie and she doesn't seem to enjoy it. We love her occupational therapist, but it is just evident this is more work for Gracie and she struggles more trying to accomplish goals. Early on we worked very hard on purposeful release, a concept that took Gracie a long time to get. Now we are working on targeted release. Putting a circle into a circle hole, putting objects into a container, or balls though pvc pipe. She did a number of these items today at OT. She didn't get nearly as frustrated when she was made to finish a task. She got to play with chocolate pudding on the mirror. Not only is is fun to play in, but it is fun to lick too. Jeff and I were thrilled with her progress, as was her OT. We really felt good about today's session.

Shortly after we arrived home, Aunt Arlene and Grandma and Grandpa B came over for a visit. Gracie played shy at first, but warmed up after a bit. She loved when Auntie Arlene would bounce her on her knees and make horse sounds. Gracie even signed "horse". When Arlene was ready to leave, Gracie signed horse again...she wanted more rides.

Gracie is sleeping now, but was quite restless. When she falls asleep she has many twitches..big twitches. Some days worse than others. It always makes me nervous because of her seizure activity...but they are nothing to worry about according to her many EEG's.

Sweet dreams to all. To all our family and friends who are sick with the flu, or with any other ailment...our prayers are with you for a speedy recovery.

Love,
Lisa, Jeff, and Gracie

Monday - PT & ECSE

Gracie awoke at 6:00 a.m. and was ready to start the day. After a brief snuggle with mom and dad, it was time to get moving. Gracie was a very good girl this morning and was a little card once we arrived at daycare. She was hamming it up good. When I left she waved "bye, bye" and blew me kisses.

Gracie had a good day at daycare and when Jeff picked her up, the kids were enjoying the nice day and were playing outside. When I arrived home, they had just pulled in the driveway and Gracie looked very tired and really grumpy. I thought her session with the physical therapist and early education teacher would not be a good session. Thankfully, after some snuggling with mom and a couple of bunny crackers, her mood changed.

Sandy, Gracie's PT, brought a trampoline with a bar on it for Gracie to jump on. Gracie was a little tentative at first, but really started to enjoy it. Sandy would get the bounce going for her and Gracie would give us a big smile and sign more...that is until it went really fast and she would lose her control, then suddenly it would be time to sit down. Gracie's ECSE teacher brought some new simple books for Gracie that assist with speech. So we'll work on those and Gracie loves them. These versions even had cheat sheets for mom and dad with examples of how to sign some of the words. Gracie really enjoyed Sandy and Emily's visit.

After they left we played outside for awhile. She ran and ran and ran down the sidewalk while holding onto Jeff and my hands. She thought that was great fun. She didn't want much for supper, but was very thirsty.

After supper it was bathtime. She was a wild girl in the tub. The splashes were sky high and after she was done splashing, she would but her head in the water and blow bubbles. She is such a little entertainer. The first time she did it, I laughed. Then everytime after she would do it and then look at me to see if I was laughing. If I laughed (which how could I not) she would smile and do it again. (Definitely her father's daughter!)

All the running and splashing made Gracie a very tired girl and she was in bed by 8:00 p.m.

Love,
Lisa, Jeff, and Gracie