New Dr. Monday

Hello - it's Jeff the Dad writing to you this evening. We had an appointment with our new Pediatrician today. Our original Peds Dr. (Dr. R) finished her residency and moved back to the east coast, where she is initially from. We miss her greatly, as she has known Grace since Grace was 3 days old. However, our new dr. (Dr. J) comes recommended by Dr. R - so we feel we are in good hands.

So today was Gracie's first appointment with Dr J (aside from meeting her once in the E-R) - and they seemed to hit it off right away. She crawled right up on Dr. J's lap and they had a grand old time, with Grace grabbing her stethoscope, picking at her name tag, and banging on the computer's keyboard. There weren't many reports or anything for this meeting - the BIG reports usually come from our Neurologist. This was more of just a "How's it going" appointment and then a quick once over. All seems to be in order, and all of the parts are where they are supposed to be. So that was good. Grace weighed in at 35.2 lbs and is about 38 inches tall (still well above the 97 percentile, in case you were wondering).

Aside from the appointment, today was fairly uneventful for my lovely girl - with the exception of ONE thing. Lisa got a phone call today from daycare, saying that one of the other kids had bitten Gracie. I checked out the situation when I went to pick her up, and Grace has a bite mark on her forearm, and another on the back of her hand (both were still there at 8:00 tonite). Nothing too serious, but I'll bet it hurt like a bear!

Not alot else to say, really. Grace was quite tired. She was a little cranky after her bath, and was quite tired. She went to sleep pretty close to her normal time and is now sleeping soundly. So is mommy.

Thanks for all of your support over the last number of months (if not longer). We truly appreciate it.

Off to bed. Talk to you again tomorrow.

Have a super week.

Jeff, Lisa, and Gracie

Sunday - Celebrating with Grandma & Grandpa B

Gracie had a very good night and awoke in a fussy mood. She was just a little more needy this morning. Everything seemed to be a little more traumatic than usual. We didn't want to get dressed, we didn't want dad to leave the room, we didn't want this or that.

About 9:00 a.m. we put her in the car and headed out to meet up with Grandma & Grandpa B. and the majority of my family to celebrate G&G's 60th wedding anniversary. We celebrated mass with them and then got together for a family picnic. Gracie was in her glory. She loves the attention, she loves having her older cousins walk and play with her. She loves her aunts and uncles playing with her and always has lots of smiles for G&G. She took Grandma by the hand and took her for a walk today and didn't want to stop.

Gracie took a 30 minute nap this afternoon and that was all she felt she had time for, because there were people to play with. She also thought she was pretty special that she got a peanut butter chocolate chip cookie and got to hold the whole thing. Mommy didn't think it was so great when I had to dig huge chunks out of her mouth.

We headed back home about 5 p.m. and halfway home Gracie fell asleep. She awoke about a minute before we drove into the garage. She was quite fussy all night and she had a few smiles here and there, but mostly just grumpy and exhausted from the day. She is now asleep and I hope she has a good night.

Love,
Lisa, Jeff, and Gracie

Saturday - Hanging with Mommy and Daddy

Gracie had a great night and slept through til 7:10 a.m. What a treat! She awoke in a great mood. We took our time getting out of bed and then made cinnamon rolls for a Saturday breakfast treat. Gracie also let us know that she wanted a banana. I always cut hers up for her, because she doesn't know how to regulate her bite size. Well today she insisted upon getting a half of the banana in one piece. She thought she was quite the big girl. She did pretty good at first, but true to form, I did end up having to dig a huge chunk out of her mouth.

Our morning was fairly lazy, we did some errands and laundry. We ate a light lunch and then Gracie took an 1-1/2 hour nap. She awoke in a great mood. (Note to my sister Cheryl, I think she might have been bored when you called me, she layed by my side and made snoring sounds. She can be quite the comic at times.)

After nap we headed to the park where Gracie got to go on the swings (still one of her most favorite things to do), she went down a couple of slides, and otherwise just had fun walking around. (Note to Cousins Julie and Crystal: Please don't be mad at Gracie, but when I put my Iowa Hawkeyes sweatshirt on, Gracie's eyes got really big. She loved the bright gold color. At one point she was snuggling and rocking with me, but her blankie was in the dryer, so she grabbed my sweatshirt to snuggle with.)

Gracie had a big supper and enjoyed some coconut cake for dessert. That was a big hit. She couldn't get it in her mouth fast enough.

We played for awhile after supper. At one point, Gracie and I were laying in her bed reading a book. Jeff came in and layed beside Gracie. Gracie put the book over both of our heads. I asked her if we were "hidin" and she said "hidin". It was so cute.

We must have played hard today, because Gracie fell asleep very quickly. She is restfully sleeping and I think it is time for me to catch some zzzzzzzzzzzzz's too.

Love,
Lisa, Jeff, and Gracie

Friday - Mommy Out Smarted the Two Year Old

Gracie had a good night last night. The one thing I don't understand about sleeping Gracie is how she can always tell when I cover her arms up. They feel cool so I put a blanket over them, in less than 2 seconds she pulls that blanket off in her sleep. She just hates anything covering her arms at night.

Gracie awoke while I was in the shower, when I came out to greet her and Jeff, she had big smiles for me. She was a good girl this morning and occupied herself with her piano. I have a hard time getting her to the breakfast table and we need her there to get her meds in her. I knew I would never get her away from her piano without a major meltdown, so I took her balloon with the Lion on it and in the Lion's voice invited her to come eat with him. She gave Mr. Lion a big smile and we headed to the kitchen table. Yay, mommy outsmarted the two year old. That doesn't happen much anymore.

Gracie had a good day at daycare. Jeff picked her up and they played outside and enjoyed the mild afternoon. I was later in coming home as I stopped at the grocery store. When I finally arrived home, Jeff and Gracie were outside waiting for me. Gracie could hardly wait for me to get out of the car for a hug, and then so she could slip in the driver's seat and pretend to drive.

Gracie was quite tired and irritable at times tonight, but just as it was getting to be bed time, she got her second wind and was quite hilarious. We have started the Duncan band. Gracie on piano, daddy on drums, and mommy on tambourine and bells. Gracie loves this and even sings in her microphone for us on occasion. You should just see her rocking out with a big smile on her face. It is priceless.

Gracie is sleeping peacefully and I'm going to join her so I can be rested up for a fun day with her tomorrow. I think the park may be calling our name. Hmmmm.

Love,
Lisa, Jeff, and Gracie

Thursday - A Happy Girl

Last night as I just finished the blog and was anticipating a calm night, I heard a restless gurgling coming from Gracie's room. When I went in to check on her she was covered with blood, her bed was covered in blood, and as soon as I picked her up, I became covered in blood. She had one of her nasty bloody noses that are difficult to stop. While daddy stripped the sheets and blankets off the bed, I put Gracie in the bathtub to await the stop of the bleeding and to remove the blood from her. It finally stopped and our little cherub was sooooooooo tired, she once again fell asleep and had a very good and restful night.

I awoke her this morning by singing to her and that brought a smile to her face. She was in a good mood, but didn't really want to wake up. I could relate. She sat at the breakfast table slowly eating a little breakfast, with her lion and giraffe balloon floating next to her. She would look at it and get a big smile on her face.

I dropped Gracie off at daycare and when I took her out of her car seat, she decided she wanted to go back in. I think she knows the days I am running late and decides to be a little more challenging.

Daddy picked Gracie up at daycare and I came home shortly thereafter. When I walked in the door, they were sitting on the front steps waiting for me. Gracie had a smile from ear to ear and that is pretty much how she was all night. She was a wild splashing girl in the tub. After bath, Jeff and I layed on her bed while she serenaded us with her piano and she also danced to the music.

She fell asleep shortly after 8 p.m., but seems a bit restless. I hope she has a good night.

Love to all,
Lisa, Jeff, and Gracie

Wednesday - EEG & Neurology Follow-up

Gracie had a horrible night. Starting at 11:00 p.m. she was up every 30 - 60 minutes crying and tossing and turning, we would just get her calmed down and back to sleep only to have it happen all over again, all night long. She finally fell into a deep calm sleep at 4:00 a.m. However, since she was scheduled for an EEG today, we had to wake her at 4:30 a.m. At this point she was really hard to wake up. Due to the lack of sleep she was a grumpy little gargoyle this morning.

Daddy took off work to take Gracie to her EEG. It took him and another woman to hold her down while they put the leads on. She screamed so loud and high that the technician indicated she had never heard screams at that decibel before. She verbalized "no" quite a bit through that procedure. Once the leads were on and she was calmed down, both her and daddy fell asleep. This is a good thing, as they need to capture brain waves while she is awake and sleeping.

After the EEG, Gracie and daddy came to visit me at work for a short time and showed off her walking skills for a few friends. Then it was home to eat lunch and take a nap before her neurology appointment. I met up with Jeff and Gracie at her neurology appointment. Before the appointment, she met up with some friends at the desk and one of the lab technicians that she fell in love with when she was having blood draws twice a week. They treated her like she was a princess. One of the desk staff had a mylar birthday balloon with a lion and giraffes on it. Gracie was admiring it and this individual gave it to her to keep. Gracie was ecstatic!!!!

Gracie loves her neurologist (as do we). Dr. N. walked in the room, Gracie removed her hand from mine and tucked hers inside Dr. N.'s hand and walked to her desk with her and sat on her lap. That is where she stayed for the majority of the appointment. We got GREAT news! NO SEIZURE ACTIVITY!!!!! The meds are doing the job and there was no trace of any seizure activity at all. Gracie's background waves are still slow, which is no surprise to us. That would go along with her Sotos Syndrome and resulting developmental delay. The normal two year old has 6 to 7 waves per minute, Gracie has 3 to 6 waves per minute, so she is hitting normal at times. Dr. N. examined her and we talked through what skills she has and she was assessed at a 15 - 18 month old level. We are ecstatic with this news as well. She is 25 months old, her learning pretty much stopped due to I.S. for 3 months and was slowed way down by meds controlling the I.S. for an additional 3 - 5 months. To be at a 15 -18 month old level is fantastic considering all of the odds that were against her. At all of our previous appointments our focus was seizure control and this appointment we got to focus on what we believe the future will bring for her. Time will tell for sure, but we are optimistic!

After we were done with our neurologist, who incidentally stayed and talked to us through two appointment slots because her last appointment for the day was a "no show", we went to see the lab technician who asked us to stop by on our way out. She had a stuffed animal fish that she gave to Gracie. We also met another little girl who has seizure issues and seemed to be struggling quite a bit, although it sounded like she was making progress as well. No matter how challenging life can be at times, you realize that someone always has it worse than you do and that we need to be grateful for all of the gifts we have been given. We have been so blessed. I also strongly believe in the power of prayer and I thank all of you who have been lifting our little cherub up in prayer...our prayers were answered today...once again.

Tonight after supper Grandma & Grandpa D stopped by to say goodbye. They have been in Rochester for the summer and are ready to head south before the snow flies. It has been good for Gracie to get to know them this summer.

Gracie is now sleeping and after the interesting night last night, I think I am going to go join her.

Thank you again for all of the prayers. Words just can't express our immense gratitude.

Love,
Lisa, Jeff, and Gracie

Tuesday - More PT

Gracie had a good night, but had a really hard time waking up this morning. I have pillows around her mattress in case she falls off at night. This morning when she was supposed to be waking up, she purposefully rolled onto one of these pillows and decided that was where she was going to stay.

When we arrived at daycare I took her out of her car seat. While I collected her things, she decided to climb back in it all by herself. Now why doesn't she do this when I want her too? Gracie gets stickers at daycare every time she drinks out of a cup instead of her bottle. She's been getting lots of stickers and she was very excited to show me them this morning. She was beaming.

Jeff picked Gracie up and headed to the clinic for physical therapy with Leslie. The therapy gym was really quiet today. Although we love the activity when it is busy, Gracie was far less distracted and cooperated so well for PT today. She got to swing in a hammock to work on her abdominal muscles. She loved that!!! She did some running, climbing up steps, and bouncing. Gracie was in a great mood throughout the session.

She was in a good mood tonight and ate a good supper. She signed that she was "all done" and then threw her plate on the floor before I could get to it. Ugh!

Gracie got a whiteboard easel for Christmas from G&G D. and she drew beautiful pictures on it tonight. Then after she was covered in marker we threw her in the tub. She splashed up a storm. All the activity from the day tired her out and she was in bed by 8 p.m.

Tomorrow she has an EEG and then a follow-up with her neurologist. I hope and pray that we get good news. Daddy is taking her to the EEG tomorrow. It is very traumatic for her to get the leads on, so I hope it goes well. Last time it took three of us to hold her down. Poor baby.

If you have any extra prayers, please send them Gracie's way.

Thank you!

Love,
Lisa, Jeff, and Gracie

Monday - PT at the Playground

Gracie had a pretty good night other than an hour where she just rolled and rolled and rolled. She awoke in a good mood this morning and was fun to be around. She was very mad at me as we headed for daycare as she had been playing with my car keys and I had to take them back to drive. She moped and gave me the sad face pretty much the whole way there. She did snap out of it once we arrived.

When I arrived at daycare at 3:30 p.m. to pick Gracie up, she was playing with all the other kiddos and it took her a minute to decide if she really wanted to go with mommy. Gracie had physical therapy today, but it was at the park/playground. We met up with Gracie's physical therapist, early intervention teacher, and occupational therapist at a park that has lots of ramps and toys to climb on. It also had swings and slides, two of Gracie's favorite things. She did great, she even walked across the swinging bridge with no help. She had fun and although she was "working" she didn't realize she was working!

The day was beautiful and the sun was shining. By the end of our hour, Gracie was very warm and needed to be misted and rehydrated. Her seizure meds don't allow her to sweat and she has to be rehydrated more often. After that we ran to the store for a short time and the cold air in the store helped to revitalize her as well.

When we got home, Gracie marched into the house and turned on the TV like she owns the place. She figured out the power switch on the TV the other day and now she loves to turn the TV off and on. Gracie had an okay supper, I think she ate too many crackers on the way home.

It was bath night and she enjoyed splashing up a storm. For her birthday she got some toy butterflies whose wings go round and round in the water and a butterfly net for the bathtub. So we put those in the water...she thought they were great if we held them or she held them, but was terrified of them if they were in the water with her. We'll have to keep reintroducing them, because I think she will have a blast with them once she gets used to them.

Gracie was so tired, so at 8:00 p.m. I went to put her to bed and I layed down with her. It took her 45 minutes to fall asleep, but she was in the best of moods. She sang and sat up, then put her feet on the wall, then layed on her mattress with her head hanging off, all the while singing and happy.

She is sleeping soundly now.

Love,
Lisa, Jeff, and Gracie

Sunday - Christmas in August

Gracie had a very good night. She slept in til about 6:45 a.m. and then woke up in a very good mood. She awoke when I was in the shower, but daddy was here to greet her and when I walked out of the bathroom, she had huge smiles for me. That was pretty much the theme for the day, a happy, happy girl.

After church Gracie took a little nap and then Gracie and I played outside. She rode her tricycle, chased mommy, we walked the neighborhood, and took a ride around the block in her wagon. She met the cutest little puppy that our neighbors were taking care of and she enjoyed it licking her and trying to jump in the wagon with her.

This afternoon we headed to Aunt Kathy's house for Christmas with Jeff's family. Since Jeff's parents head south for the winter, we like to have Christmas with everyone present. Aunt Kathy and Cousins Calvin, Maria, and Joshua have quite the animal menagerie, so Gracie got to pet some kittens, see some dogs, harass an indoor bunny, shake up the cage of the love birds, watch the fish swim, and pet a chin-chilla. She was loving all the animals. For not having an afternoon nap, she did very good. She received many fun presents, many of them music focused, so that was a huge hit.

Gracie fell asleep on the way home, awoke as we entered the garage. She gave Jeff and I huge smiles and then I carried her into the house, changed her into her pj's and she went right back to sleep. What a busy and exhausing, yet very fun day.

Love,
Lisa, Jeff, and Gracie

Sunny Smiley Saturday

Gracie had a pretty good night, although she did wake about about 4:00 a.m., sit up and started to crawl out of bed. I helped her stay in bed and she layed back down. A few seconds later she sat up again, looked at me, and shook her head "no". I shook my head "yes", she smiled, layed back down and went back to sleep til 7:45 a.m. She awoke in an incredibly happy mood. Big smiles!

Gracie's morning was spent with daddy at band practice as mommy had a hair appointment and daddy's practice got moved from the afternoon. I'm told Gracie was pretty good and even was a little shy. I'm told that she took a liking to Betsy and her keyboard though. I'm also told that Betsy can blow a pretty mean bubble much to Gracie's interest and amusement.

When I got home Gracie was sleeping and she ended up napping for 2 hours. She fell asleep without lunch, so I thought she would be ravenous when she awoke at 2:45 p.m., but really wasn't. She did eat a fairly good lunch and then we headed outdoors to play. We were outside until suppertime just enjoying the beautiful weather. Daddy put together Gracie's new tricycle and Gracie took it for a spin. A backwards spin as she hasn't figured out how to make it go frontwards yet. Then we were going to take the wagon for a spin, but it was wet so will have to save that for another day.

Gracie was a very happy content girl for most of the day. She had lots of smiles and giggles for us and absolutely loved being outdoors. She ate a good supper that included her favorite pasta and then it was bathtime. She splashed like a crazy kid, but was also done and wanted out much sooner than usual. After bath she got to dance to a Michael Jackson CD. She loves this new after bath ritual. On those occasions where we don't have time for this, we see a nice little temper tantrum.

Gracie went to bed about 8:30 p.m. and is sleeping soundly. I'm headed that direction myself.

Love,
Lisa, Jeff, and Gracie

Happy Friday

Hello again! Yes, it's the all knowing dad writing to you again tonite.

What a good day! Grace was a little grumpy when she got up this morning - between you and me - it's because she woke up only 4 minutes before dad had to leave for work (however, I could be wrong). Lisa snuggled with her for a while this morning and Grace snapped out of her crankiness.

Was a good day at daycare. When I arrived to pick her up all of the kids were around the table having milk and animal crackers. Upon seeing me, Gracie had to show me that she too had an "aminal" cracker in her mouth - that sure did look (ahem) tasty.

After we got home, Gracie decided that it was time to walk outside for a while. We walked up and down the hill in our front yard, and on the flat of the boulevard, and down the sidewalk, and then chased dad up the hill again, etc, etc. This went on for about 40 minutes with Grace having a big smile the whole time. I finally got her to go into the house for a little bit - at least so I could change out of my tie - and then she insisted that we go back out for more. All of the up and down the hill, and working with weight shifting and turning corners on a hill (while chasing dad) was hard work for her. She was having so much fun though, I don't even think she recognized that she was engaging in therapy and "work".

Grandma and Grandpa D came over tonite, and we all had a real good time. Grace was on top of her game, having to take grandma by the hand and show her around the house, as well as other fun stuff.

After Grandma and Grandpa left, Grace was starting to look a little worn out - until someone said, "should we head to bed?" - then suddenly she was wide awake, laughing, cracking "jokes" and tearing all over the house. But finally - CRASH. Down for the count she is.

Mommy is feeling tired too, and dad has some work to finish, and then off to bed too.

Have a great weekend!
Love,
Jeff, Lisa, and Gracie

Thursday

Hello, today's blog is being written by Jeff the Dad. Today started out as a good day. Grace got to sleep in until 6:30 or 6:45 this morning. We didn't go to daycare at the normal time today, since we had an appointment to get measured for our new orthotics (these would be the new, new ones). The last ones didn't fit quite properly, so we had to get remeasured. This time they made a cast of Grace's foot, so hopefully the new braces will be a better fit.

Grace tolerated the appointment pretty well. She got a little fidgety when they were wrapping her foot - but hey, I wouldn't have cared much for it either. She did enjoy wandering around the lobby of the brace store. We have been there a few times and the receptionist knows Grace (and Grace knows/recognizes her). Grace enjoyed walking right up to her desk and resting her chin on the desk while the lady tried to type and do other work. Was pretty cute to see.

After finishing with the brace measurements, it was off to daycare - or so I thought. But . . . no. Rather than going to daycare, Grace had to dance in the parking lot (of the brace store) for 5 or 10 minutes, with dad humming snippets of Michael Jackson songs and a variety of Broadway showtunes. Finally, after that novelty wore off - we were on the road to daycare - where I am told Gracie had a good day.

When I picked her up about 4:30 I was met with a warm reception, as if to say, "hey dad, glad to see you here. I'll come give you a hug - oh, on second thought I won't. Can you wait until this song is done? But come stand by me." (is she her father's daughter,or what?) We had to wait a few more songs, and then we could leave for home.

We had a good evening here at home. Grace had a few grumpy moments (mostly mad because it was raining, and we couldn't walk outside), but they were outweighed many outright hilarious moments. We also had one GREAT triumph tonite. As Lisa has said, we have been trying to get Grace to sign "all done" PRIOR to throwing her plate on the floor (signing "all done" after the plate hits the floor, is just kind of speaking the obvious). So tonite - she signed "all done" then we asked (vocally), "Gracie, are you all done?" and - can you believe it - Grace said, "All Done."!! We were thrilled! Yeah, proud dad strikes again!

Anyway - Grace was tired by the usual time and was in bed around 8:00. Took a while to fade into dreamland, but now is sleeping soundly.

Good night to all.

Love,
Jeff, Lisa, and Gracie

Wednesday - Tired Girl

Gracie had a good night and awoke in a pretty good mood this morning. After breakfast we got a little extra snuggling and rocking time in as we had an appointment with her early education teacher at our house at 8:00 a.m., so we didn't have to rush to daycare/work like usual. Gracie loves Emily her teacher and was very happy to see her. She showed her how she could sign "music" and had lots of smiles for her.

Then we headed to daycare and Gracie wasn't sure she wanted mommy to leave. Gracie was happy to see daddy when he picked her up. They got to play outside for a short while until it started raining. When I got home Gracie was happy to see me, but I soon found out she was one tired and grumpy girl. Nothing seemed to be quite right.

At the supper table Gracie got extremely mad at Jeff, gave him a very defiant look for moving a book out of her reach and cleared the table in one swoop of the arm and then went into tantrum mode. Needless to say, she got a time out for that behavior. The whole time she is sitting in the living room for her time out, she is whining/pleading "mom"..."mom"...."mom".

After supper we took a bath and she turned into a happy splashy girl. After we got out we put her jammies on and she was ready for bed. She was asleep by 7:30 a.m. and is peacefully snoozing.

Love,
Lisa, Jeff, and Gracie

Tuesday - A Good OT Session

Gracie had a good night, but woke up too early and boy was she grumpy and had a little too much attitude. She had gotten out of bed herself, which is never a good scenario in the morning. This makes her unhappy. I usually like to go lay by her and snuggle...it puts her in a much better mood. However, when we headed to the car her mood lightened.

Gracie had a good day at daycare and got to play outside. Jeff picked her up about 3:30 p.m. and headed to the clinic for Occupational Therapy. I met them in the lobby and I could tell immediately that Gracie was in a great mood. Usually I dread OT days as Gracie is very strong-willed and uncooperative. Her therapist is great, but Gracie is challenging. Today she was cooperative and helpful and followed simple directions. She didn't always love it, but she tolerated it. Gracie loved going down the slide...Wheeeeeeeeeeeeeeee!

Gracie went home with daddy while I ran to the store. When I got home they were playing outside and Gracie was in the best mood. For the first time ever, I let her sit in the front seat of my car and pretend to drive. It was so cute...she was making "vvvvvrooooom" noises and then "beep, beep". She was in her glory. We all played outside for awhile. We are finding that one of the things that makes Gracie most happy is having BOTH mommy and daddy in the same room with her. She loves to take walks and hold both of our hands. It's like she realizes that makes her family complete.

Our OT suggested a basketball hoop to work on targeted purposeful release with Gracie. So I went out and bought a toddler sized one. Gracie loved the ball, but really didn't want to dunk it. Our neighbor boys came over and showed her how it works, I thought with Owen and Jack doing it, it might peak Gracie's interest. She seemed interested for a bit and then not. Hopefully it will become more fun for her.

Gracie fell right to sleep at 8:00 p.m. and is sleeping peacefully.

Love,
Lisa, Jeff, and Gracie

Monday - We Learned a New Sign

Gracie had an okay night, she was a little restless at times and sounded like she was a bit congested. When it was time to wake up, Gracie wanted no part of it. She was snuggled in and she just wanted to keep her eyes closed, sucking her thumb. When she finally awoke we got some smiles, but they soon turned into strong-willed struggles. She didn't want to eat breakfast, she didn't want to get dressed, she didn't want her diaper changed, she didn't want to do anything but sit in front of the TV. At one point I went to pick her up and put her in her chair for breakfast and in her struggles my earring came in contact with her cheek and she had a scratch down her cheek.

Daddy took her to daycare and when he asked her if she wanted to go "bye bye" her mood lightened immediately. She was ready to go and happy to get to daycare. Guess she was sick of mom and dad and wanted to play with her friends.

When I picked Gracie up at daycare tonight she came running with arms open wide and a huge smile on her face. I got the greatest hug. Gracie was in a great mood all night. We worked on eating with a fork and spoon at supper. Jeff was still working and I find I can work with her best one-on-one without any distractions. It'll take more work, but I'm seeing progress.

Usually when Gracie is done with her food at home, she throws her plate on the floor and then clears any food left on the table with a swipe of the hand. Needless to say I'm not pleased with this practice and have been trying to teach her to sign "all done' when she is finished rather than throwing her plate. Tonight she did just that. The plate remained and she signed "all done". YAY!!!! I was thrilled.

Gracie was a crazy splasher in the tub tonight. She had a great time. She was tired when she got out though. She was asleep before 8:00 a.m. Sweet dreams.

Love,
Lisa, Jeff, and Gracie

Sunday - Hanging at Home

Gracie awoke at 6:45 a.m. this morning. She had a pretty good night, but from her breathing I suspected that she might be coming down with a cold. A big sneeze at the breakfast table, complete with ooey gooey stuff flying out of her nose, confirmed my suspicions. I suspect she has a sore throat too, as she would grimace at times when she was swallowing.

Gracie was a little more needy today also, so although she had times where she was very good and in a very good mood, she also had times where she just needed a little extra TLC.

After church this morning, Gracie and I went out for a morning walk, which turned into a run for Gracie. I walk very fast backwards and she runs toward me to "get me". She loves this and I've never seen her move down the block so fast.

We had another success today at our neighbor's house. Gracie loves our neighbor Diane's house, driveway, garage door, you name it, she loves it. So she decided she wanted to go to Diane's house, but there is a big step up to get on the front porch. I told her we were going home so I wasn't going to help her on this big step up. She was determined, and sure enough, she held onto the side of the house and pulled herself up. I was shocked and proud.

Grandma and Grandpa D came over and brought us supper and stayed for a nice visit. Gracie was kind of tired, so wasn't at her finest. However, after they left she got her second wind. She was a busy girl. She jabbered and jabbered and jabbered. She finally fell asleep about 9:45 p.m.

Gracie had a few of her weird movements today. Just as I was saying we hadn't seen any for awhile. Prayers are welcome and appreciated.

Love,
Lisa, Jeff, and Gracie

Saturday - More Birthday Fun

Gracie had a great night and slept in until 7:00 a.m. this morning and then took a nap at 9:45 a.m. She must have known she was going to have a big day. Gracie's Godparents and Godfamily came over for a belated birthday brunch. Gracie absolutely loved the attention and had fun playing with everyone.

One of Gracie's gifts was a little piano with a microphone. It was an instant hit! That has been the focus of her attention all day. She plays it and sways back and forth to the music. The smiles are from ear to ear. She even picked it up, took it in her room tonight, and thought mommy was going to let her go to bed with it. Ahhh - I don't think so. She was spoiled with lots of other fun things too.

This afternoon Gracie took an hour nap. I joined her for about 20 minutes. It felt like I had just fallen asleep when I felt a stuffed cat on my head. Apparently that was my sign that it was time to wake up. Gracie and I had a snack and then went outside to play. We walked for a little while and then went out on the deck to play with her water table. Gracie had great fun with that and was soaking wet by the time we came in.

Gracie had a great success today. She can now stand up from a sitting position on the floor all by herself. We have been working on this with her for months. Well she did it many times today, and even once did it while bringing her new piano up with her. YAY!!!!

Gracie amazes me with her cognitive skills of late. She is understanding so much and communicating so much back through gestures, sign language, and a few words. Tonight Jeff was playing her new piano and she told him "stop". It didn't sink in until she removed his hands from the keyboard.

Gracie must have gotten too much sleep today, because she had a really hard time falling asleep tonight. She didn't go down until 10:00 p.m. What a little night owl. That is 2 hours past her bedtime.

I'm happy to say I saw no seizure activity today, nor have I seen any all week. I'm optimistic the med increase was just what we needed for added learning, as well as seizure control.

Love,
Lisa, Jeff, and Gracie

Friday - Full of Laughter and Fun

Gracie had a good night last night. I awoke at 4:30 a.m. and realized I had slept the night through without any stirring, that was a good sign. Gracie was a happy girl today.

I dropped Gracie off at daycare and she was ready to play. Jeff picked Gracie up and they played outside for awhile. When I got home Gracie was happy to see me and was in quite a good mood all night. We played chase tonight and she ran around the island so fast just giggling and having fun. It made me realize how far she has come.

Gracie also signed for us tonight. She signed that she wanted the music on. She signed horse, dog, and fish. She's really starting to connect the signs and what they mean. It's so much fun to watch her catch on to new things.

Now she is resting up for the weekend.

Love,
Lisa, Jeff, and Gracie

Thursday - Sweet, Smart, and Happy

Gracie had a restless night from 2:00 a.m. til she woke up. She would cry out, but still be sleeping. I just snuggled her as much as I could and tried to keep her calm and reassured. It took her a bit to wake up this morning, but once she did she was happy.

Usually I carry her from the car into daycare, not today, we got her out of the car, I let her walk the whole way in, helped her walk down the stairs and she went running in to say hello. I was so proud of her.

Jeff picked her up at daycare and headed to work where he dropped Gracie off with me as he had a video shoot tonight just as I was done with work. Gracie was in the best of moods. She had a little snack and totally unprompted, signed that she wanted "more" after she had finished her fruit and grain bar. Tonight she also signed "music" when we turned some on at home.

Gracie had just the best evening. She was cooperative, happy, engaged, and things were really clicking for her tonight. It was so much fun. She wasn't convinced she wanted to go to bed tonight. Daddy tried to put her to bed, but that is mommy's job and she would not have anything to do with going to bed for dad. So as soon as I was available, I went to put her to bed. As I was laying by her, she took her hand and hit her leg, which is the sign for "dog". I looked at her with a puzzled look and said "dog?" She smiled and did it again. I again said "dog?" and she just started giggling.

She also gave mommy unsolicited sweet kisses tonight. She was in such a good mood and everything seemed to be right in her world.

Love,
Lisa, Jeff, and Gracie

Wednesday - A Gingerale Explosion

Gracie awoke in a good mood and snuggled with daddy for a little bit upon awakening - but we all know it is mommy who makes morning snuggling so fun. So mommy snuggled a bit to put Gracie in a good mood. Once that was done, she promptly turned into a major daddy's girl.

We got Gracie all dressed for the day and were getting her meds and breakfast ready while she roamed the house with a sealed can of gingerale. Gracie loves pop cans -- so shiny and bright. I think she would pick a pop can over a toy any day. So she is having a good ole time, shaking it up, and jostling it. Jeff and I make the joke about not drinking that can of pop today, when it falls out of Gracie's hand, hits the linoleum in the kitchen and....EXPLODES!!!! The carpet in the living room is wet, the kitchen floor, refrigerator, walls, and Gracie are covered in foamy explosive sticky gingerale. OH MY!

Gracie had a good day at daycare. She got to play outside with balls and enjoy the sunshine. When I went to pick her up she was rehydrating with some yummy Gatorade. Gracie was a good girl in the car on the way home, once it was established that she could not have the car keys.

There wasn't too much play time tonight, by the time we ate supper, took a bath, and got our jammies on we were very tired.

We did get word today that the company that made Gracie's orthotics are going to re-do them for us and were very apologetic about not getting them right. Thanks to both of our physical therapists for helping us with this issue.

Love,
Lisa, Jeff, and Gracie

Wednesday - New Orthotics Needed

Gracie had a pretty good night, with a little bit of restlessness in the wee hours of the morning. Gracie slept until 6:15 a.m. and we snuggled for a very short time this morning as we needed to get a move on. She wasn't quite sure about whether or not she wanted mommy to leave when I dropped her off at daycare, but did okay.

Jeff picked her up and headed to her PT appointment at the clinic. Gracie's physical therapist at the clinic agreed wholeheartedly with her PT through the school system that Gracie's brand new orthotics don't fit her right and they are causing too much redness. So we need to have them redone. Gracie had a good appointment and our PT confirmed my thoughts that Gracie's knees and hips were tighter than they have been in a while. More than likely this is due to a growth spurt. I'll continue with her stretching exercises, but we know this will be a theme with Gracie since she grows so fast.

Gracie was thrilled to throw frogs (cloth ones) down the big slide. Purposeful release is coming easier and easier to her. Then she got to go down the slide...that is always a hit! We headed home to have dinner...although she was extremely thirsty, she wasn't very hungry and ended up eating very little dinner. Although she did come to get a fresh baked chocolate chip cookie later. She was chocolate from toes to ears.

Some friends stopped by around 7:00 p.m. and Gracie took right to them. She was quite the social kid. She used a pen and paper to draw a pretty picture. We were thrilled to see this as that is a skill she has been struggling with.

Gracie was more than ready for bed at 8:00 p.m. and fell right to sleep. Hopefully there will be sweet dreams tonight.

Love,
Lisa, Jeff, and Gracie

Monday - Musical Girl

Gracie had a pretty good night, she was a little more restless than she has been, but it wasn't the constant rolling that she does some nights. She awoke in a grumpy mood, did a little snuggling with daddy...but mornings are for mommy, so wasn't happy until mommy came in her room to snuggle.

Gracie had a good day at daycare. When I picked her up for her PT appointment, she was sitting at the table with 3 of her little friends and she was coloring a picture. She insisted she needed to take her artwork home with her.

Physical therapy went well. We started working on having her step up on her own. We have ALOT of work to do on this one. She just doesn't have the balance to go up very far on her own and you can really see her tremory type movements come out when she tries. I have been questioning Gracie's new orthotics. I don't think they still fit her right and that they cut into her feet. I had our physical therapist take a look and she confirmed that. We'll have her other physical therapist take a look tomorrow at the Clinic and let the two of them consult and will need to go back to the prosthetic lab for some fixes or we may have to go with something else.

Gracie had a great evening. She was so happy. She splashed up a storm at bath time. After bath we turned on Michael Jackson music and mommy, daddy, and Gracie danced. She thought this was great fun. It took her about two seconds to fall asleep tonight and she looks so peaceful. I don't think she has moved since I layed her down.

Love,
Lisa, Jeff, and Gracie

Sunday - A Reunion with the Rellies

Gracie had another good night. She awoke bright and early at 6:30 a.m. I was in the shower when she awoke and when I came to say good morning, daddy had her watching Ed Young, a christian minister, on TV. Would you believe that Ed got top billing over mommy. I got a smile when I said good morning, she started to walk over to me and then Ed started saying something that caught her attention and she halted and walked back to the TV.

Gracie had a good morning, she splashed in the tub and had a great time. Since I was solo (daddy was working), I didn't attempt to take her to church. Lately it seems fruitless, so we watched mass on TV and she was very good during that. She loves the music, just can't seem to sit still for the rest.

We went for a walk outside today and much like yesterday, she decided she wanted to either walk backwards or run. She is really loving to walk backwards these days. She looks like such a little goofball walking everywhere backwards.

After lunch and a short nap, we headed to a family reunion about an hour away. Gracie was very good in the car for the first half of the trip. She read her book, we had some tunes on and she was a happy girl. Halfway there, she dropped her book and the fussing began. I was on busy interstate, so there was no way I was going to try and pick it up for her. She fussed, she whined, I had another book that I handed to her in the backseat that she refused. She acted as if it was an insult that I even offer her something other than the beloved "Raindrop Plop" book. When we got off the interstate, I was at a stop sign and grabbed the book and handed it to her. She didn't want it. What a little stinker. As soon as we arrived her mood lightened and she was happy to see her cousins, Grandma and Grandpa B., and some Aunts and Uncles, as well as many people she didn't know and some she came to know.

Gracie was a very busy girl at the reunion. There was lots of room to walk around and she took advantage of that. She was very tired by the time we left. She slept about half the way back and awoke the minute I pulled in the garage. Once home, Honorary Uncle Mitch stopped in for a short visit all dressed in his military uniform. Gracie was intrigued, especially with the flag on his arm. She kept giving him the look over, but didn't want to get too close.

Gracie had a good supper and a great evening. She was full of lots of smiles. She fell asleep very quickly as she didn't have long naps today at all.

Gracie did have an episode of strange shoulder and arm movements again today. So prayers are still appreciated.

Love,
Lisa, Jeff, and Gracie

Saturday - A Happier Girl

Gracie had a very good night and awoke at 7:00 a.m. this morning and was very happy to snuggle with her mommy. Sleeping in til 7:00 a.m. felt like a little slice of heaven. I'm happy to say she awoke in a very good mood and whatever seemed to be bothering her last night thankfully disappeared.

She had a good morning, played, danced, and spent a couple of hours solo with daddy, while I did a little Christmas shopping - Jeff's family Christmas is in August. When I came home she had given daddy a little trouble while he was cooking her lunch. Jeff insisted she grew four or five arms and wanted to grab or touch everything.

I wasn't home long before I realized she was in need of a nap. It took her about two seconds to fall asleep. She awoke an hour later and was very unhappy, so I layed down with her and she fell asleep for another hour. She was in a fantastic mood when she woke up.

Gracie did have one of her weird little seizure movements today. Bummer, I had just shared with her neuro how good she was doing. Tonight I think she may have had a second one, but I'm not certain of that. I guess we'll wait to see what tomorrow brings.

Gracie was watching her Baby Signing Times dvd this afternoon when the power went out in the neighborhood for about 45 minutes or so. She was not happy that her show was shut off midway through. How do you explain power to a two year old???

Gracie and I headed out to the mall this afternoon for a short bit. She was a very good girl there. When we went into Bath & Body Works she got strict instructions to keep her hands to herself. Last time there we took out a shelf of lotion bottles.

When we got home from the Mall we decided to walk outside for awhile. Gracie decided she wanted to walk backwards. It was hilarious, we walked down the block with Gracie walking backwards. Everytime I would try to turn her around frontwards, she would smile and position herself right back to backwards. She thought this was great fun.

Gracie ate a huge supper of pasta - no surprise there since it is one of her most favorite things to eat. We read books and played until bedtime. She was a very tired girl tonight. All that walking backwards must have tired her out. She fell asleep in record time tonight.

Love,
Lisa, Jeff, and Gracie

Friday

Gracie had another really good and peaceful night. She awoke in a great mood this morning. The first order of business was a bath and she was having so much fun. She had a plastic glass in the tub with her and would let it start to float away, then would catch it. She found this greatly entertaining. She didn't want much for breakfast, but did eat her peach sauce with meds.

We headed to the prosthetic lab as Gracie's new orthotics were in. She was very entertaining in the lobby and was loving the attention she got from the receptionist and an older couple that came in. Her orthotics are definitely bigger and fit her much better than her old ones. From there we headed to daycare.

Jeff picked her up late this afternoon and since we were having our work picnic and movies under the stars, he was going to feed her before I got home, so we could zoom. That's when all heck broke loose. She ate fine, but was extremely upset about getting washed up. When I arrived she was screaming at the top of her lungs having one of the biggest tantrums I've seen to date. That was the theme for the rest of the night. At one point she screamed for about 10 minutes straight. She wanted to be held, but still was unhappy and not content at all. Usually holding and bouncing can console her, but she was pretty unconsolable. I was starting to think something was medically wrong with her, when she finally calmed down again. About the time, Jeff and I decided we would continue with our party plans, she would start to get out of control again. We finally decided there was no way we could go. Looking back at the evening, I'm so glad we didn't, she was just not herself. She was ready for bed at 7:30 p.m.

I'm hoping sleep will rejuvenate our little girl back into a sweetie pie.

Love,
Lisa, Jeff, and Gracie

Thursday - Mommy's Girl

Gracie had an awesome night's sleep. She awoke in a good mood and had lots of smiles for me. We went to eat a little breakfast and I mean "little". She doesn't like to eat when she first gets up, but I need her to eat a little so we can get her meds in her. Last night I had put a bowl of M&M's on the table. She spied those immediately and pointed. I told her that M&M's weren't for breakfast that they were for supper. She seemed okay with that for a little while. Pretty soon she gave me an impish smile and pointed again. I made sure she got her M&M's tonight for supper though.

Gracie had a good day at daycare and Jeff picked her up. Since he was on early shift today, he had time to work with her on her walking skills outside. She is doing so good. When I got home she was ecstatic to see me and was pretty much glued to my side for the rest of the night. She was mommy's girl.

After supper Gracie sometimes gets to a point where she is tired and a little over stimulated, so we have found that if Jeff and I take her into her room and just play and snuggle with her on her bed, she takes time outs to rest, but is in a much better, playful, and relaxed mood. So tonight we did this. If you remember, a couple of months ago Gracie and I went round and round about the night light in her room. She always wanted to touch it and I was teaching her that it was a "no no". She hasn't touched that light in months, pays it no mind really. Tonight she crawls up to it, I say nothing but keep a watchful eye on her. She turns back to look at me and shakes her head "no". I'm impressed that she realizes it is a "no-no". Then she looks at it again and I can tell it is calling to her. She looks back at me again and shakes her head "no". I also shake my head "no" in confirmation. Suddenly the urge is too great and she grabs it. Oh....we were so close.

Gracie had a hard time falling asleep tonight, but I think it was because she was overtired. She is peacefully snoozing now. I'm happy to say, once again, no seizure activity was witnessed today. YAY!

Love,
Lisa, Jeff, and Gracie

Wednesday - Smile Pretty

Gracie had another pretty good night and really didn't want to wake up this morning. Once I coaxed her awake she was in a good mood. At breakfast she kept fussing that she wanted something, but I couldn't figure out what it was. She kept pointing to the cupboard. Finally I realized she wanted music - the cd player is under the kitchen cabinet. That put her in an even better mood.

I took the afternoon off work and picked Gracie up at daycare. Gracie's honorary Auntie B. and her sister who just made the ranks of honorary Auntie D. came over and we headed out to some beautiful gardens to take Gracie's 2 year pictures. Gracie was in a very good mood and was really quite patient with all of us. I looked like a total moron doing jumping jacks and singing the "Banana Boat" song to get her to laugh and smile. I'm very excited to see the pictures. After we were done, we came back to our house and Gracie paraded Auntie B. and Auntie D. up and down the neighborhood. She was loving the attention.

After supper, I gave Gracie her nightly M&M's. She gets 8 of them. She used to be so polite and eat one at a time. Well her chewing is getting much better and she is getting braver. Tonight she fisted them all and threw them into her mouth. Oh my, she had chocolate spilling out for quite awhile.

Gracie continued to be in a great mood for the rest of the evening. The best news of all, we are now on three days without any seizure activity. Yay! Thank you for the continued prayers.

Love,
Lisa, Jeff, and Gracie

Tuesday - A "Good" Day

Gracie had a pretty good night, but woke up a bit grumpy. Daddy was the one to go in her room and even though she has been a daddy's girl lately, in the mornings she needs her mommy. So I went in to cuddle with her for a bit. Once her mood lightened Jeff and I were both snuggling with her and Jeff said "Good Morning". Gracie looked up at him and very clearly said "Good". We were both shocked...then he said it again. She again, said "Good" with a big smile on her face. I thought I needed to get in on this, so I said "Good Morning" and sure enough for the third time, she said "Good". What a great way to start the day.

Gracie had OT this afternoon and did really good there too. She did a great job with purposeful release, she is working on "on" and "off" and her therapist said to her "on" and Gracie repeated "on". She also cooperated much more with coloring on the white board. She helped take off her shoes and just really had a good session.

We hustled home to join in on the "Neighborhood Night Out" party. My goodness we have alot of kids in the neighborhood and they were kind enough to share their toys with Gracie. I realized we need to get her more outdoor toys. Gracie also loved hanging out with "Annabelle", our neighbor Nancy's dog. Annabelle is so good with Gracie too.

Tonight as I was putting Gracie in her pj's she looked up at me and signed "milk". She wanted her night bottle. She kept telling me (using sign) that is what she wanted. She would sign, then look up at me and smile.

We witnessed no seizure activity today, so that makes two days in a row of being seizure free. YAY!!!

Thanks again for all the prayers for our precious little one.

Love,
Lisa, Jeff, and Gracie

Monday - Back to the Routine

Gracie had an okay night...not perfect, but not super restless either. She did toss and turn during a pretty loud thunderstorm. She just snuggled into mommy for comfort for awhile too when that was going on. It was a rude awakening for Gracie to have to get up at 6:15 a.m. this morning. She did do better than I anticipated. Jeff took her to daycare this morning and she was a little more clingy than usual.

I'm told she had a good day and as I was asking her about each of the daycare kids on the way home, I got smiles as I mentioned their names, so I think that is a good sign. Gracie ate a good supper tonight and then it was playtime. We had fun playing chase, reading books, and Gracie did some new signs tonight. She did the sign for Cat, Dog, and Baby as we talked about them. She wouldn't do fish for us though, even though she was doing that quite a bit on Friday. She also started to do the actions for "Head, Shoulders, Knees and Toes" without being prompted. She misses "shoulders", mostly does "head", but got "knees" and "toes" in occasionally.

Gracie had lots of giggles tonights and was a wild splashing girl in the tub. Once again we had water streaming down the bathroom walls.

We did not see any seizure movements today, so I'm once again hopeful that the med increase might do the trick. Please keep the prayers coming her way.

Love,
Lisa, Jeff, and Gracie

Sunny Sunday

Gracie had a great night last night and awoke at 7:30 a.m. We ate breakfast and then got all dressed up for church. On the way to church nothing was right and Gracie was not happy, once we got there she was a fine for a short time, a very short time, and then thought she needed to get out of the pew and make her way up to the altar. When we put the ka-bosh on that plan, she decided to vocalize her displeasure...this got her a quick trip out of church. Secretly I think that was her plan all along. So Jeff and Gracie spent the service out in the narthax walking around.

After church we came home, ate lunch, and Gracie took a short nap, then we headed to the NICU (Neonatal Intensive Care Unit) reunion picnic at the hospital for kids that have been in the NICU. It's been exactly two years ago for Gracie. So we hung out there for awhile. Got a family picture taken and had cookies and lemonade. There was also a bounce house, some activities for kids, such as making sand tubes and beaded necklaces. Gracie is still so oral that everything goes into her mouth, so we opted to avoid those stations. We met another little Grace who was about Gracie's size that had been in the NICU for 9 months, we were surprised to find out that she was now 5.

Jeff had some errands to take care of this afternoon, so Gracie and I hung out at home and played. She was a giggle monster. We played and read books. We played chase and she was squealing in delight.

Grandma and Grandpa D. came over for supper and birthday cake tonight and she had fun with them. She even went up to Grandpa and said "hi".

Gracie did have one rhythmic arm spasm today while Jeff was holding her, but I didn't notice any others. I was so hoping they were gone with the med increase. We'll continue to keep an eye on it.

Tonight I was getting Gracie's night bottle ready and she was over anxious and fussing greatly and grabbing at things and then it happened, she pulled the full bottle of milk off the cupboard without a lid on it. There was milk everywhere...all over the floor, all over me, all over the cupboards. She immediately knew that this was not a good scene. I very calmly, but firmly let her know that I was sitting her down on the floor to watch me clean it up and she was not to move. She did not move...although the whole time I was cleaning it up, she kept signing milk with both hands. The fussing stopped, she was very serious, as was I. When clean up was done, I moved her into the living room, told her I loved her and that I needed her to stay right where I put her while I made her a new bottle of milk. Once again, she stayed where she was put and was rewarded with her bottle of milk. This was a good scenario for me to gauge what she does and doesn't understand, as many times when I correct her she doesn't seem to listen or finds it funny, so I now know what she is capable of understanding.

We snuggled for a bit afterward and now she is sleeping peacefully. Vacation week is over. It went too fast. I will miss just hanging out, playing, and teaching Gracie through the day. I so enjoy her, even when she is trying, she has such a great personality. I feel so blessed.

Please continue to keep Gracie in your prayers for seizure freedom.

Thank you,
Lisa, Jeff, and Gracie

A Lazy Saturday

Gracie had a horrible night last night, she was in constant motion, tossing and turning, waking up, crying, fussing, and just couldn't seem to get comfortable or get rest. This went on most of the night. At 12:30 a.m. on one of her awake times, I decided to change her diaper, she figured out how to do shadow puppets on her bedroom wall. That was kind of fun, especially when I made the big monster hand that comes to eat her puppets. She thought that was hilarious.

Gracie woke up a little after 8:00 a.m. and was a daddy's girl all day long. If he would leave the room to do whatever, she would have a major meltdown. She insisted upon sitting on his lap when he ate his lunch (hers was already done). She followed him everywhere and wanted to be held by him.

Gracie was in a very good mood today for the most part. She did alot of dancing, we read books, and we played with her Fisher Price farm. She is really starting to get into that and we practice purposeful release by throwing the farm animals down the silo. Please don't tell her that mommy is actually working on "therapy" assignments with her.

Gracie watched her "Baby Signing Time" DVD today. We try to make sure she watches it once a day and it is really clicking with her. There is an animated frog on there that eats a bug or something and then lets out a big burp. I love watching Gracie when this happens because she giggles out loud. She loves the frog and if I happen to say "Excuse me" after he burps, she thinks it is doubly funny.

Gracie and I went for a run outside. I hold both of her hands and walk backwards rapidly as she "runs' toward me. She loves to run, but does tire quickly. We're working on stability and endurance.

Tonight as I was feeding Gracie her nighttime bottle (yes, I know I said I was going to take it away from her at two, I'm still working on that), I took it out of her mouth and there on the end of the nipple was a very dead box elder bug. I had seen her playing by the deck door earlier, crouched down on the floor, but didn't see her stick anything in her mouth....well I think she snuck that one by me. Thanks to Jeff's cousin Barbara, I already know they aren't poisonous...thanks Barbara.

Gracie is asleep and went down very peacefully. The great news of the day is that she had NO seizure activity. I'm hopeful that the Topamax increase is doing what we need it to do. Thanks so much for all of the prayers for our little pumpkin.

Love,
Lisa, Jeff, and Gracie