Tuesday, March 31, 2009

Tuesday - Visitors to Make Me Smile

Gracie had a good night until about 4:00 a.m., she became extremely restless, rolling back and forth, back and forth. At one point, she lifted up her head, looked right at me and gave me this huge smile, then layed back down and fell back to sleep.

Gracie had a good day at daycare and was all smiles when I picked her up this evening. She was in a great mood when we got home and we played on the floor for a little while before supper. Gracie ate a good supper, but then again we had her favorite....PASTA!!!

After supper we had visitors. Auntie Arlene and "the crazy neighbor lady" (inside joke) Arlene came to visit Gracie. Gracie played a little shy at first but did warm up and treat them to smiles. She also had them both at her beck and call. She had them holding her hands walking around and around the kitchen...she loves the attention. About 5 minutes after they left, she was sound asleep and hasn't moved a muscle since....I think they wore her out!!! I could tell that Gracie loved having company (and we did too).

Have a good night.

Lisa, Jeff, and Gracie

Monday, March 30, 2009

Monday - A Happy Girl

Gracie slept in til about 5:45 a.m. this morning. She had a bit of a restless night at times, but all in all had a good night. She awoke while I was in the shower and Jeff was in the bedroom ironing his clothes. Usually she crawls in to find daddy when she awakes, but today she crawled into the living room and just layed on the floor waiting to be found.

Gracie had a good day at daycare and daddy picked her up while I ran to the grocery store. When I arrived home Gracie was just starting to eat her supper. She had a good meal, but wanted some mommy snuggling time, so was quick to be done. After dinner, she was very cranky. She just couldn't be consoled...that is until I suggested we put Gymbo on TV. Gymbo is a videotape with animated characters and real kids going to the zoo. It's got lots of bright colors and great music. It was made at least 20 years ago and a copy can't be found anymore...this tape is priceless as it is Gracie's ultimate favorite. She layed on the floor for awhile watching it and Jeff was sure she would fall asleep, but she got her second wind and got up to dance to some of the music. After eating a quick supper, I joined her in front of the TV to sing and dance. Daddy joined us too.

After Gymbo we read some books, but Gracie was not very content, she was just too tired. However, she did get up off my lap, stand up, took my hand and lead me to the CD player...she wanted Brad Paisley music. We danced to a few songs and she was all smiles...even though they were sleepy smiles. She fell asleep a little before 7:30 p.m. and is tucked in snoozing away. Her tummy seems to be happy again too. Yay!

Today was a good start to the week.

Lisa, Jeff, and Gracie

Sunday, March 29, 2009

New Car Sunday

There is a new car in our house! Yes, Grace has a new set of wheels and is quite pleased with the purchase. It is complete with a horn that plays music (if only we could've programmed Brad Paisley!) and has room for our dollies to ride in the rumble seat.

Overall the day was a good day for the Grace girl. We had a good day at church, with Grace sitting through the whole service, so I (dad) did not have to take her out to network with the other little kids that can't sit still.

Grace's tummy was still bothering her today. She had only 2 crackers for lunch and spit 1/2 of that back up not too much later. She did enjoy her Orange Gatorade, though. It has become her very most favoritist drink. By suppertime she was feeling a little better and was able to eat some hotdish (that would be casserole for you non-Minnesotans).

Bath-time as always was a good time. Grace had both her arms and legs going to beat the band, splashing water everywhere. I should seriously begin taking a bar of soap for myself.

Tonite at bedtime, Grace didn't want mommy's usual "You are my sunshine" and requested "Rudolph the Red Nosed Reindeer" - giggling each time mom would get to "you'll go down in history". I heard mommy singing, I didn't think it was that funny, but sometimes things just get you going I guess.

She is now sleeping away - presumably until morning. Sweet dreams to her, and everyone else.

Wishing you the best,
Jeff, Lisa, and Gracie

Saturday, March 28, 2009

Saturday - A Whole Lot of Everything

I'm happy to say that Gracie had another good night. She awoke at 6:30 a.m. and was snuggly and happy. It was nice to be able to all have breakfast together as a family and not feel rushed and on a timeline. Gracie did a good job on her breakfast -- it was a favorite, a cinnamon role, milk, and peaches.

Gracie and daddy hung out in the morning while mommy had a hair appointment. Gracie took two naps this morning, one for a half hour and the other, just over an hour. I got home just in time for lunch. Daddy worked on some of her PT and OT lessons with her.

After lunch we had a mission. Gracie needed some outdoor toys, so we headed to Toys R Us to see if we could find a few things...and we did. Then we headed to ShopKo, our mission there was to find a waste basket with a lid. Gracie has decided that the kitchen waste basket is intriguing, so we had to find a way to make it less appealing.

Gracie was so tired when we got home, but had a hard time getting comfortable. She did nap for about 90 minutes, but it was not a content sleep. We soon found out why...Gracie's tummy was acting up. She had diarhea...we changed 3 nasty diapers in less than 20 minutes. We gave her Gatorade, toast, and applesauce for supper. The Gatorade went down well, the applesauce enough to get her meds down, and she nibbled a bit on the toast. She did take a bottle before bed, and then ended up spitting up part of that.

Gracie is in bed now, but is quite restless. I'm hoping she feels better in the morning.

Lisa, Jeff, and Gracie

Friday, March 27, 2009

Friday -- Foggy & Groggy??...No, Just Happy

Gracie had another good night's sleep last night. Very early this morning she was tossing and turning and rolling all over the place and just couldn't get comfortable. Suddenly she rolled on top of me and then snuggled in, suddenly she was comfy and ready for more snoozing. She woke up in a very good mood.

When Gracie got to daycare, one of the other little girls came up and gave her a kiss and a hug. It was so sweet. Gracie just leaned into it and you could tell she liked it and was reciprocating in her own way.

We increased Gracie's Topamax (epilepsy med) again today and I thought she would be groggy and foggy, but I didn't really notice that. I do think she was less steady today, so I do think there is a little effect from it. We haven't seen anymore absence seizures for about a week, so I'm hoping we have them under control.

Gracie was a good little eater tonight. After she finished her supper, she started on mommy's chinese food. There isn't much this girl doesn't like. After supper it was tubby time and she splashed happily. She happily played after bath with her V-tech bug for the longest time, then explored our pantry and helped herself to cans and bottles. The big Gatorade bottle was a challenge to move, but she accomplished this mission.

Gracie fell asleep about 8:30 p.m. and is snuggled in. I think all three of us are ready for the weekend.

Lisa, Jeff, and Gracie

Thursday, March 26, 2009

Thursday - Occupational Therapy

Gracie slept from 7:30 ish last night to 6:00 a.m. this morning. She awoke in a great and snuggly mood and was so much fun this morning. She was full of smiles.

Gracie had a good day at daycare and took a good afternoon nap. Daddy picked her up shortly after 3:00 p.m. and headed to the clinic for occupational therapy with Emily. Gracie seemed very groggy through her session. She gets easily distracted by all the other therapists and patients in the room, and wants to go "visiting". Her favorite part was popping bubbles with her pointer finger. We are to work on "blowing" with her and also having her crawl and sit with her arm supporting her as her arms seem weak and we need to work on developing those muscles more. As we increase Gracie's Topamax she goes into what I call a "groggy foggy" state until she gets used to it. I thought that might be why she was so tired at OT. However, when I got her home, she got her second wind. She gave me tons of kisses (usually those are reserved for daddy) and kept saying "hi". Lots of smiles and snuggles and giggles too.

We once again had a battle of the wills at her night light. She crawled up to it, but didn't touch it and then looked at me. I just shook my head no, then she looked back at the night light, then back at me, I shook my head no again. This went on for about 10 times. Then she put out her arm to touch it and I said "No, no, Gracie". At this she pulled back her hand and didn't touch the night light. This happened another time and again she pulled back her hand. Then the little munchkin giggled, looked at me and touched the night light, knowing full well it was a "no, no". This got her removed from the area. Throughout this whole scenario I was biting my lip so I wouldn't laugh. She just loves to test mommy.

She fell asleep at 7:30 p.m. and having just checked on her, hasn't moved a muscle. It's so nice to have her sleeping peacefully.

Tomorrow we increase her Topamax again, so it will be interesting to see how she does over the weekend with the increased amount. Thankfully, we've seen no more absence seizures.

Lisa, Jeff, and Gracie

Wednesday, March 25, 2009

Wednesday - Happy Girl

Gracie slept from 6:45 p.m. last night til 6:00 a.m. this morning and she awoke in a GREAT mood. Mommy, Daddy, and Gracie all snuggled in her bed for a few minutes and that is one of her favorite times, when she can ease herself awake and have a leisurely morning thumb suck with mom and dad nearby to smile at and hold hands with.

Gracie had a good day at daycare. She didn't want to eat her lunch today and I'm noticing her appetite declining more and more every day. When I went to pick her up she was walking so big and tall in her braces. She seemed very steady and looked like a big girl. I was very proud of her. She was in a good mood when we got to the car, but as soon as I put her in her car seat she started to fuss. I suggested we put on some music and her frown turned upside down and her legs started to kick in excitement. She definitely loves music.

Gracie ate a good supper and then it was time for a bath. She splashed and splashed and had a great time. After bath we read some books and snuggled. Gracie fell asleep at 7:30 p.m. and is tucked in snug as a bug in a rug.

Lisa, Jeff, and Gracie

Tuesday, March 24, 2009

Tuesday - Increase of Meds

Gracie slept from 7:20 p.m. last night til 6:30 a.m. this morning. She had a pretty restful night, but did scream out a couple of times. She awoke in the best mood and just wanted to hold mommy's hand. When I tried to take it away, she just held on tight and wouldn't let go. It was really sweet.

Gracie had a good day at daycare and was happy to see daddy when he picked her up. The two of them headed home to wait for mommy. I had to stop and pick up groceries as we were out of everything and had planned to do so this weekend, but ran out of time. By the time I made it home at 6:45 p.m., Gracie had fallen asleep on daddy's shoulder. He layed her down in bed, I kissed her, took her out of her clothes and put her jammies on and she didn't wake up. She was one tired girl.

I talked with Gracie's pediatric neurologist today. Gracie has had four absence seizures on us over the last month, she also has had some jerks that are similar to the infantile spasms while she is sleeping. We have decided to increase her Topamax, which is her epilepsy medication to see if that will control both. Whenever we do an increase, Gracie goes into a foggy, groggy state of being for a week or two. I'm not looking forward to that. If that doesn't do the trick or if we see it increasing we'll be back in the hospital for additional monitoring. Please keep the prayers coming. I was also concerned because we see constant twitches in Gracie's arms and legs as she is falling asleep. I was relieved to find out that is nothing to worry about and is quite normal. Some people are twitchers.

I'm feeling sad that I didn't get to play with Gracie this evening. Guess I'll have to go snuggle with her while she is sleeping.

Lisa, Jeff, and Gracie

Monday, March 23, 2009

Tired Girl

Gracie slept quite peacefully last night. She was a little more restless toward morning. She would roll against me and snuggle, then as soon as I would put my arm around her she would lift it off and roll back away. All this while sleeping. She was grumpy when she woke up, but snapped out of it fairly quickly.

I picked Gracie up early from daycare as she had physical therapy and her early education teacher met with us. She got to have a birthday cupcake for snack as it was one of her daycare friend's 2nd birthday. Yum! Yum!

Gracie showed off some of her walking skills, bending down to pick up things from the floor, and getting herself from a standing position to a sitting position. She enjoyed playing peek-a-boo with Sandy and Emily. Gracie also went digging in Sandy's bag for bubbles and played tug of war with shiny beads.

Gracie was so tired this evening, she could barely keep her head up at dinner time. She fell asleep at 7:20 p.m. and is now tucked in for sweet dreams.

Lisa, Jeff, and Gracie

Sunday, March 22, 2009

Sunday - Feeling Better

Gracie had a GREAT night last night! She slept very peacefully and seemed to breathe much better. She woke up while I was in the shower and daddy was in our bedroom getting dressed, Gracie pushed open the door to announce that she was awake. She had a big smile on her face. When I got out of the shower to say good morning, she was focused on "Ed Young" on TV and didn't want to be bothered. Needless to say, I was persistent!

Gracie had a pretty good day. She took a 45 minute nap this morning and a 90 minute nap this afternoon. I layed down with her this afternoon and at one point, she awoke, saw I was there, smiled and held my hand and stuck her thumb from her other hand in her mouth and fell back to sleep. That melted my heart.

We went outside briefly for a walk, but the wind was pretty gusty and I was worried about her ears so we didn't linger.

This afternoon Gracie's Aunt Kathy and Cousins Calvin and Joshua came to visit. She warmed up to them pretty quickly and thought Calvin's cell phone was cool. Too bad he wouldn't let her have it. Oh to be so little!

Tonight Gracie had the best time in the tub. Not only did she splash with her arms, but her legs were going a mile a minute too. She was smiles from ear to ear. She was a hoot after bath too. She was daddy's little dare devil, climbing down his back, and if he would spin her or hold her so her head was toward the floor she was delighted. She also bounced on her bed for awhile (recommended by physical therapist Leslie). She was in such a great mood, we let her stay up a bit longer than normal. We were having too much fun playing with her.

She is now asleep and hopefully having sweet dreams.

Have a great week.

Lisa, Jeff, and Gracie

Saturday, March 21, 2009

Sunny Snotty Saturday

Gracie slept until 8:00 a.m. this morning...yes, 8:00 a.m. It was a very restless sleep from about 4:00 a.m. on, but sleep none-the-less. She would roll over, lift her head up, look at me, and then plop her head back down, stick her thumb in her mouth and she would be out again.

Gracie still didn't feel great today, but was a pretty happy girl for the most part. The amount of snotty discharge that I wiped from her nose just amazes me. How can such a small child produce so much? But enough on that topic.

I was quite concerned after her morning nap as her breathing was a real raspy sound from her chest. Once she was up for a little while that seemed to clear up and I didn't hear it again through the afternoon. She took a 90 minute nap this afternoon and woke up all smiles.

Since it was sunny and 62 degrees I decided it would be okay to take her outside for a short time. I debated as to whether or not this would be a good idea, but finally decided the fresh air might be just what she needed. We took a walk down the block with Gracie wearing her foot braces. She is still a little wobbly with them, so I thought a nice walk might help. When she would get pooped, she would sit on the sidewalk for a minute and then we would continue walking again. She has a great love for the wood windchime on our front porch, so that made her smile big time.

Tonight at dinner I was absent-mindedly singing a line from a Brad Paisley song "I'm so much cooler online". Gracie became very excited, waving her arms, kicking her legs, big smiles and looking at the CD player. She loves music....especially that song. So I had to turn it on for her.

Daddy and Gracie hung out tonight while I went to a friend's BD party. They had a good night, although Gracie wasn't too interested in going to sleep and when she finally did go to bed, had a hard time relaxing and falling asleep. I came home to find Gracie and Daddy both asleep!

Lisa, Jeff, and Gracie

Friday, March 20, 2009

Friday - Not Feeling Good

Gracie came down with a nasty cold and had a horrible night. She couldn't sleep as she was so congested. She wanted to sleep so badly and yet, felt so miserable she couldn't. I tried sleeping on the couch with her so she would be upright, but she couldn't get comfortable. So I walked and bounced with her for quite a while. We tried rocking, but that really wasn't the ticket either. Neither of us got more than a couple hours of sleep and by morning she was so tired, irritable, and just didn't feel well. I ended up staying home from work to care for her and I'm so glad I made that decision. She needed some extra TLC today.

We both took a nap this morning, although hers lasted over 3 hours, mine did not! She just didn't have much of an appetite today either. She didn't want any breakfast, she did drink some milk. At lunch time, she ate a little bit but didn't want her milk. Knowing she needed extra fluids today I brought out the orange Gatorade. That got some smiles and she drank a nice glass full.

We did more quiet things today -- sang, read books, snuggled, and watched her "Signing Times" DVD. By 2 p.m. she was more than ready for another nap. She slept about 2 hours and I have to admit, I took another nap with her. She awoke with lots of smiles, which was great as they were hard to come by today. She was especially snuggly with mommy after nap time.

Gracie and daddy hung out for an hour and a half while I ran an errand and she was in a pretty good mood. She didn't want much to eat for dinner, but really enjoyed mashed potatoes and gravy. I think her throat is sore, so the smooth foods feel good going down.

She is now in bed, but very restless. Her nose keeps draining and I've been in a couple of times to suck it out with the "nose squicher" -- not sure hot it got that name (I think because that is the sound it makes). I think it may be another long night. Glad I got a few naps in today.

By the way, as of tomorrow, Gracie will be down to only two meds...her Topamax for epilepsy (which she'll more than likely take forever) and Vigabatrin, the med that we got from Canada since it is not FDA approved in the U.S. We hope to start that wean shortly.

Have a great weekend.

Lisa, Jeff, and Gracie

Thursday, March 19, 2009

Mommy's Little Teaser

Gracie had a very restless night again....or perhaps I should say early morning. She started her rolling at 1 a.m. and by 4 a.m. it was constant movement. I was exhausted just watching her. She seemed to be stuffed up too, so I think she was a bit miserable. I tried having her lay on me for a little while...but she was in roll mode. She totally awoke at 5 a.m., but was quite grumpy. I think she was just tired.

Gracie had a good day at daycare and daddy picked her up this evening and then it was Gracie and mom tonight as daddy had play practice at church. Gracie was quite a little teaser. She was laying on the floor sucking her thumb. I came over and told her I wanted to suck her other thumb, she always offers us fingers to suck, but her thumbs are pretty precious and reserved for her only. Well I put her thumb in my mouth and she giggled. Then I told her I wanted the thumb that she was sucking, I took it out of her mouth and went to suck it...she giggled again. We giggled together for a little bit and then I told her I wanted her thumbs again, the little tease quickly put both of her thumbs in her mouth at once so mommy couldn't get them and then she smiled big time at her success!

We read books tonight, but she was so tired. At 7:30 p.m. she fell asleep in my arms drinking her bottle. I've noticed she has quite a few involuntary body movements after she falls asleep. They always worry me, but we don't think they are related to I.S. I'm always on heightened alert for any strange body jerks or movements.

Sweet dreams to all.

Lisa, Jeff, and Gracie

Wednesday, March 18, 2009

Wednesday - Mommy's Tub Splasher

Gracie had a very restful night again last night. About 4:00 a.m. she rolled over and snuggled in with me. I love when she is a snuggle bunny. She awoke at 5:30 a.m. and was daddy's girl this morning. Gracie was good about taking her Topamax (epilepsy med) this morning as usual, but decided her Vigabatrin and applesauce should not stay in her mouth. I finally got her to swallow most of it. Then it was time for her liquid Zantac...yeah, that was a waste. It went in and then she let it drain out of her mouth. Next week we don't have to do Zantac anymore, nor will we have to do the antibiotic...YAY!

Gracie had a good day at daycare. When I dropped her off, she thought it would be great fun to terrorize the baby in the swing. When mommy told her "no, no, you need to just watch the baby", she asserted herself even more toward the baby. After a few of these attempts mommy moved her to the other side of the room. That was met with tears. It is so hard leaving her behind when she is sad, I just want to pick her up and smother her with kisses.

Daddy picked Gracie up at daycare and they had a good time at home. When I finally made it home, Gracie was pretty tired. She perked up a bit while she ate dinner and then it was bath time. Splash! Splash! Splash! She just loves to make the water fly out of the tub. When she is done splashing we are all soaked. I love to see her do this, because she stopped doing it for awhile when on steroids. She is very happy when she is splashing.

Gracie fell asleep at 7:35 p.m. I snuggled with her in my arms for awhile and didn't want to put her in bed. She was so sweet and snuggly. I'm pleased to say that she is still spasm free and I haven't seen any absence seizures in a couple of days. YAY!

Lisa, Jeff, and Gracie

Tuesday, March 17, 2009

Brad Paisley Fan

Gracie had a wonderfully restful night and awoke at 6:00 a.m. Daddy didn't have to be to work til later this morning so Gracie got to hang out with dad for awhile.

We are slowly easing Gracie into wearing her orthotics and that is going quite well. She seems to be doing good with them. She's up to 45 minutes 4 times a day.

Gracie was a tired girl when I picked her up at daycare, she fussed for part of the way home, but didn't fall asleep. When we got home I layed her on the floor and she sucked her thumb while looking at a book. She was quite content to just rest while I got some laundry going. While I started supper, I asked Gracie if we should play some music. It was like I gave her an energy boost...she bolted upright and speedily crawled to the under the counter CD player in the kitchen and waited for me to put a cd in, all the while grinning from ear to ear. We have found that she is a huge Brad Paisley fan. If daddy happens to sing along and pick her up and dance, she is in heaven.

Gracie is now tucked in for the night and hopefully having sweet dreams.

Lisa, Jeff, and Gracie

Monday, March 16, 2009

Monday - A Day to Play Outside

Just as I was saying what peaceful sleep Gracie has been having she had a horribly restless night. Constant tossing and turning. She awoke at 5:30 a.m. and was ready to start the day. Daddy took Gracie to daycare and showed them how to put on Gracie's foot braces as she doesn't wear them all day, we gradually have to break them in.

When I arrived this evening to pick Gracie up, she was playing ball outside. She was all dirty -- a good sign that she had fun! Gracie cried most of the way home and about a minute from home she fell asleep. I took her out of her car seat and we went inside, I layed her down on her bed and she didn't move. She slept for about 90 minutes and I think she would have slept longer had I not gone in her room and rustled around a bit. There is a good chance she could have slept through the night, but she needed to take meds and she refuses them when she is sleepy.

Gracie ate some dinner and then she had a nice warm bath. After her bath she was still cranky, so we turned on a music DVD of Michael Monroe and the music calmed her. She had lots of smiles.

She is now in bed and I'm thinking I will join her shortly. Sweet dreams to all of you.

Lisa, Jeff, and Gracie

Sunday, March 15, 2009

Sunny Sunday

Gracie slept from 8:00 p.m. last night to 7:00 a.m. this morning. Once again her sleep was very restful and she woke up in a great mood. I'm not quite sure what to credit these restful nights to -- perhaps the decrease in Prednisolone -- but I'm so relieved that she is finally getting restful sleep.

This morning we gave Gracie her LAST dose of Prednisolone! It was very exciting to know we are done with it. Again, we thank God for it being our miracle drug to stop the I.S., and we thank God that we can hopefully close that chapter of worry and continue our journey to making sure Gracie is as healthy as she possibly can be. We will continue the Zantac and the Bactrim (antibiotic) for one more week and then that will be the end of both of those. She continues to take Topamax twice a day and more than likely will for her whole life to manage her epilepsy. She is also still taking Vigabatrin twice a day...we'll touch base with our neurologist soon to get a plan to wean Gracie off of that.

Gracie played hard this morning and was a very happy, but tired girl. At 9:45 a.m. she fell asleep and didn't wake up until Noon. After lunch we went outside to enjoy the beautiful day. We walked on the sidewalk and Gracie tried out her new shoes and her orthotics outside. Rather than walk, she would bend down toward the ground and watch the puddles of water. I had my work cut out for me in keeping her from touching them. Maybe I'll let her have that experience as soon as she doesn't have to suck her thumb every few minutes. Then we took a stroller ride. Gracie was in heaven. She sat straight up and kicked her feet in happiness.

Daddy got home from his band duties at church around 2:00 p.m. and Gracie was happy to see him, but was winding down. She fell back to sleep at 3:00 p.m. and took a 45 minute nap. When she woke up, Gracie and daddy took another stroller ride and I'm told she was grins from ear to ear.

She was such a smiley girl all day. I bought her a new hat today and when Jeff put it on her head she gave a big grin and left it on. She's always been good about wearing hats. With her Topamax we have to be extra careful with her in the sun and heat. She isn't able to perspire normally, so we'll have to have a spray bottle with us when it gets too warm and when we start to perspire, we'll have to keep her moist as well. She also needs to stay well hydrated.

She is now tucked into bed and is a sleeping beauty.

Lisa, Jeff, and Gracie

Saturday, March 14, 2009

Super Saturday

Gracie slept for just about 12 hours last night and awoke this morning at 7:15 a.m. I awoke at 6:00 a.m. and was in disbelief that she was still sleeping. She had a very restful sleep and awoke in a great mood. Saturdays mornings at home when mommy and daddy are home are the best. We all eat breakfast together and just hang out in our jammies and play.

We gave Gracie a bath and she was the splashing queen! All that excitement mellowed her out and by 10:15 a.m. she was ready for a nap. She fell right to sleep and slept for an hour. She awoke in a great mood, but that sobered when she fell down and hit her forehead on the kitchen floor. Usually Gracie doesn't fuss much if she falls, but this one hurt and she cried and cried and cried.

Auntie Sheila, Uncle Chris, and cousins Kayla and Jason came to visit and share some of the toys they had outgrown with Gracie. She now has a kitchen of her very own, complete with pots, pans, and food. This evening she was having a blast with it. Gracie enjoyed all of the attention! She was even good about sharing her toys. It was fun to have someone to play with other than mom and dad. She played piano with Kayla and "get" with Jason.

After our company left, Gracie took a nap and when she awoke I took her outside for a stroller ride. That was a big hit too.

We also started having Gracie wear the orthotics for her feet and ankles today. We are starting slow...20 minutes at a time and only 3 to 4 times a day. Then we'll increase to 45 minutes at a time and slowly work up to all the time. Gracie is doing good with them, she is re-learning how to walk and balance in them.

Tomorrow Gracie has her last dose of Prednisolone!!!! YAY!!!! It was truly our miracle drug and we are so thankful that it worked for Gracie. It just has some nasty side effects that we are anxious to say goodbye too.

Gracie fell asleep in my arms and is snug as a bug in a rug in her bed. Sweet dreams.

Lisa, Jeff, and Gracie

Friday, March 13, 2009

Well Rested and Happy

Gracie fell asleep last night at 6:30 p.m. and slept straight through to 6:00 a.m. this morning. It was a very restful sleep and she awoke in the best mood! We have a gate across our bathroom doorway so that Gracie can see me get ready in the morning, but not actually join me since she has a great love of the toilet. So the whole time I'm putting on my makeup and fixing my hair she stood at the gate with her blankie over it and her head resting on it and she would look up and smile at me. It was so sweet.

Gracie had a good day at daycare and daddy picked her up about 3:30 p.m. She was in a great mood when I came home around 6 p.m. She always likes to snuggle with me for about 10 minutes after I come home. Any time daddy would come near she would get all excited and start giggling. Rumor has it there was a great game of "I'm going to get you!" before I got home.

She took her sprinkle and crushed meds with applesauce just fine, but when it came time for her liquid meds, she clamped her mouth shut and shook her head "no". She has been saying "no", but she just started shaking her head to express "no". Unfortunately for her, daddy was boss on this one and she had to take them.

She wasn't very hungry for dinner. Her appetite has really gone down for the evening meal. She ate a little bit of pasta and salmon, but her favorite was the orange gatorade she got to drink. It's one of the things we use to bribe her to swallow her liquid meds. For those of you that don't remember, Gracie HATED orange Gatorade or anything orange for that matter when she was around a year old. That has changed. She thinks it is pretty cool if she gets orange Gatorade.

Gracie fell asleep on my lap drinking her evening bottle. Actually we snuggled for awhile on the couch and I dozed as well. She is now in bed, all snuggled in.

Have a great weekend. Tomorrow we begin breaking in Gracie's orthotics.

Lisa, Jeff, and Gracie

Thursday, March 12, 2009

Happy and Tired

Gracie had a wonderful night, she wasn't very restless at all, and even snuggled in with mommy for awhile. She awoke at 5:15 a.m. and was a bit grumpy, but snapped out of it fairly quickly. She also thought it would be great fun to let the applesauce with her meds in it fall out of her mouth. Thankfully she takes the meds for her epilepsy first and swallows them. It is the Vigabatrin, that is also an anti-epileptic med but was for the infantile spasms not her epilepsy, that she likes to let fall out of her mouth. I don't feel so bad about that as we will begin weaning her off of that fairly soon.

Gracie got in trouble at daycare. She likes to stand with her nose touching the TV and also discovered the volume button. After telling her no-no and multiple attempts to remove her from the immediate proximity of the TV, a coffee table was placed in front of the TV as a deterrant. She is a persistent one when she gets an idea in her head.

Daddy picked Gracie up at daycare and took her to get her orthotics this afternoon. They are too big for her current shoes, so she needed new bigger shoes. We went and got a pretty white and pink pair of tennis shoes in a size 10. We also picked up a pair of summer sandals that will work with the braces. We will have to slowly break in the orthotics and monitor Gracie's feet for irritation to make sure the fit is appropriate, so we will start her with them this weekend.

Gracie was so tired that she fell asleep on daddy's shoulder at 6:30 p.m. I was downstairs getting a bath ready for her. We decided that if she woke up when we put her pajamas on we would give her a bath, if she didn't wake up...no bath. Well she didn't wake up at all so has been asleep since 6:30 p.m. Now I have to take a dirty girl to daycare tomorrow.

Wishing you all a good night.

Lisa, Jeff, and Gracie

Wednesday, March 11, 2009

A Happier Day

Gracie had a good night's sleep, but awoke in a grumpy mood. I think she was still just a little tired. Once she fully woke up she was in a good mood. We sang on the way to daycare and she thought that was pretty funny.

Gracie had a good day at daycare. I picked her up around 3:30 p.m. and we headed to the clinic for her first physical therapy appointment there. We are starting PT at the clinic on alternate weeks from physical therapy in our home through the Birth to Three program. Today was a day to assess Gracie's skills and Leslie, the PT, gave us some things to work on to strengthen her glute muscles. Gracie was in a very good mood for the session, despite having a very short nap today.

After PT we went to visit daddy for a short time at work since Gracie has hardly seen him this week. Then we headed home, ate dinner, and played til it was bedtime. It took Gracie only about a minute to fall asleep.

It's only 8:30 p.m., but our whole household is thinking that it is bedtime. It's been a busy week.

Lisa, Jeff, and Gracie

Tuesday, March 10, 2009

Little Miss Grumpy Grundy

Gracie had a restful night, one of the more peaceful ones she has had in a long time. She awoke at 5:30 a.m. but was kind of tired and a bit grumpy. She snuggled with her daddy for a few minutes before he took off for work...which was precious time as he is working long hours this week and she hasn't gotten to see much of him.

She had a good day at daycare, but had some "attitude" when I got there and had a fit when I put on her coat and hat. She cried the whole way home. Once we got home I snuggled with her for a little bit, we walked and bounced and that calmed her for a little while. She ate a little dinner and took her meds, but again started crying and was not happy at all. I gave her a bath a little early as that is always a hit and she was happy in the tub, but as soon as she was out she was not happy and let me know it.

We went upstairs, sat at her little table and sang with her musical Sesame Street book. Thinking she was probably still hungry I put a couple of waffles in the toaster and we ate waffles and sang. This seemed to mellow her out. She fell asleep drinking her evening bottle and is snuggled in for the night. I'm sure she'll sleep better once daddy comes home and gives her a tuck in kiss.

Sweet dreams!

Lisa, Jeff, and Gracie

Monday, March 9, 2009

Happy Monday

Gracie had quite the restless night and continually cried out in her sleep. She has a cold and her nose is plugged so she had a hard time breathing, I think that made her sleep less than restful. She awoke at 5:00 a.m. She was in a good mood, but a little more needy for attention.

Gracie mellowed out on the way to daycare and jabbered quite a bit. She gave me the cold shoulder when I left her. She had a good day at daycare and I picked her up at 3:30 p.m. as she had physical therapy at our house today and her early education teacher joined in on this appointment too. Gracie was in a fantastic mood. She was ready to have some fun. Her physical therapist worked on side to side sitting to strengthen her hips and also teaching her to walk backward, so that when she starts to lose her balance she knows how to step back and catch herself. By the end of the session, Gracie was already starting to take backward steps to keep herself from falling.

Gracie was in a great mood all night long. At supper I gave her a full container of berry applesauce and let her eat it however she wanted to. This was great fun. She loves when she gets to do this. She was applesauce from head to toe...but she had fun.

Gracie fell asleep in my arms drinking her night bottle and now she is snuggled in for the night. I hope she has a restful sleep.

Lisa, Jeff, and Gracie

Sunday, March 8, 2009

Silly Sunday

Gracie awoke at 4:45 a.m....I mean 5:45 a.m. CDT! She had a very restful night, one of the best she has had in weeks, perhaps months. She awoke in a happy mood and daddy discovered "The Wiggles" on TV this morning, which was an instant hit for Gracie. She was glued to the TV. She loves anything with music and bright colors. She stood by the TV set and danced.

Daddy had to work all day again, so Gracie and mommy hung out and bonded. Even though she had her moments, we had a great day of fun, smiles, laughter, singing, playing, and reading books. Today's favorite book was "Raindrop Plop". She specifically picked it out, brought it to me, and we read it at least three times.

Gracie's nose was a faucet today. Poor little thing tolerated the nose sucker most of the time, but had strong feelings about it at other times. Her little nose looked like it belonged on Rudolph. Gracie and mommy took an hour and a half nap this morning.

Yesterday after Gracie's bath, she brought her favorite pink duck upstairs with her. She carried that duck around with her all day. Today when I asked her if she wanted to take a bath she got a big smile and went and got her pink duck. Her other big accomplishment today was she pushed her toy bus on the floor as if it was driving around. That is a first for her, she hasn't gotten that concept until today. I'm guessing she sees the kids at daycare pushing the cars around.

Tonight when daddy came home Gracie was giving him kisses. Earlier in the day, I had asked for a kiss and she wouldn't give me one. So when I saw her giving daddy kisses, I said "Gracie Lou" (her nickname...Lou is not really part of her name) "what are you doing giving daddy kisses, mommy wanted one." She knew immediately what I was talking about and got all excited and was laughing and giggling up a storm. It was so cute, she can be such a tease. Incidentally, I did get a kiss after all of that.

Tomorrow we decrease Gracie's Prednisolone to 1.5 ml every other day and it is her last week of Prednisolone. We have our fingers crossed and sending prayers up that we don't see a return of the infantile spasms. If you have any extra prayers, we would appreciate if you would send some up for Gracie.

Have a great week.

Lisa, Jeff, and Gracie Lou

Saturday, March 7, 2009

Saturday - Sick Again

Gracie awoke at 4:45 a.m. this morning to start the day. It was evident that she had come down with a cold. She had smiles for us, but was a bit grumpy too. She was daddy's girl this morning, unfortunately daddy had to work and left at 5:45 a.m. Gracie fell asleep at 7:00 a.m and napped for an 1 hour and 45 minutes. She awoke in a better mood, but still had her moments. We played, we read some books, and we wiped her nose alot. You could just tell that she feels a bit under the weather.

After lunch, I gave Gracie a bath and that calmed her into nap time. She took just under a 3 hour nap this afternoon. She awoke in a great mood. Once again, she had moments of great happiness and other moments where she was more fussy. Her appetite wasn't very big today, but she had great fun putting her dinner plate of food on the top of her head. She had potatoes and hamburger everywhere...in her hair, on her forehead, on the back of her shirt...everywhere. She enjoyed this.

I put some bunny and baby duck window clings on the deck door window that she noticed immediately and fell in love with. They are kind of sparkly and she likes to stand touching them and suck her thumb.

Gracie was very tired tonight and fell asleep about five words into the song "You are my sunshine".

Hopefully Gracie will have a good nights sleep so she can feel better in the morning.

Lisa, Jeff, and Gracie

Friday, March 6, 2009

Oh So Tired Friday

Gracie awoke at 2:15 a.m. and tried to convince me that it was time to play. I in turn convinced her that it was really time to go back to sleep. I walked and bounced her while singing some of her favorite bedtime songs for about 45 minutes before she decided I was right. She awoke again at 5:30 a.m. to start the day. Gracie was a little more sober this morning.

Gracie had a good day at daycare and when daddy picked her up, she was so tired she fell asleep in the van on the way home. Jeff took her coat off and put her to bed and she never woke up. When I made it home at 6:45 p.m., she had just woken up. Then she fell asleep on her bed as we were just hanging out at about 8:30 p.m. I hope this doesn't mean she'll awake bright and early again.

I think I will head to bed, so I can get a few zzzzzzzzzz's too.

Lisa, Jeff, and Gracie

Thursday, March 5, 2009

Telling on Mama and Dada Thursday

Gracie had a good night and had only a few restless times through the night. She slept until 5:30 a.m. and woke up in a great mood. She chattered all the way to daycare. She kept saying "Dada, no, no, no."

Gracie had a good day at daycare and she talked about "mama" and "dada" all day. She had a half hour morning nap and a two hour afternoon nap. Her good mood continued into the evening. She had great fun playing with the wash cloth that I washed her hands and face with at dinner time. She put it over her eyes, then on top of her head, then back over her eyes, then across her whole face. She amused herself like that for about 10 minutes.

It was bath night and Gracie decided to dive in with clothes and all, head first. I was right there, but wasn't quite quick enough. I pulled her out and she was mad, because she wanted to be in the tub.

Gracie was very snuggly tonight and once again fell asleep in my arms drinking her nighttime bottle. Sweet dreams.

Lisa, Jeff, and Gracie

Wednesday, March 4, 2009

Wednesday - Occupational Therapy Day

Gracie tossed and turned and awoke at 1:30 a.m. and thought it was time to get up. I did convince her that it was still sleepy time. She had a pretty restful night otherwise. She awoke at 5:00 a.m. and was quite snuggly and then was ready to play.

Just yesterday I was saying how good she is about taking her medicine, well Gracie must have read the blog and decided to make life a little more interesting this morning. We give her sprinkles and crushed pill meds in applesauce. She took it just fine. I looked away to put her liquid meds in a syringe and she just opened her mouth and let it all spill out.

I picked Gracie up at daycare at 3:30 p.m. and we zoomed to the clinic for her first occupational therapy appointment. Gracie's therapist, Emily, was great and did many of the same things with her as her ECSE teacher Emily does. She also got to bounce on a balance ball. She thought that was great fun after she got used to it. She did have an absence seizure while sitting on the balance ball. I didn't like to see that. I will have to talk with her neurologist about those when we see her in April...or sooner if we see them happening more often. I'm noticing she has them when overtired or in a new or stressful situation. She also charmed just about everyone in the elevators at the clinic...smiling, flirting, being very social.

Gracie was starving by the time we got home and snarfed down her dinner, then we played for a while, but she was so tired. She fell asleep at 7:30 p.m. and is snuggled in for the night. I hope this doesn't mean an extra early morning.

Lisa, Jeff, and Gracie

Tuesday, March 3, 2009

Busy Tuesday

Gracie had an extremely restless night, she tossed and turned and tossed and turned. She just couldn't seem to get comfortable. At about 4:45 a.m. she settled into a peaceful sleep and then woke up at 5:15 a.m. She didn't want much for breakfast but is very good about taking her medicine these days. We reduced her Prednisolone this week to 3 ml every other day. Next week it is 1.5 ml every other day and then we are done with the Prednisolone. YAY! If all goes well with that, we'll begin to decrease the Vigabatrin. That is the drug that worries me the most as it can cause peripheral vision damage if on it for too long.

Gracie had a good morning at daycare. I picked her up at 12:30 p.m. and she fell asleep in the car before I even left the daycare driveway. We headed to the prosthetic lab where they fitted Gracie for her orthotics. It will take a little over a week before we get them. I got to pick out the design, I picked out daisies. Then the technician asked me what I wanted for the other foot, I told her I wanted daisies for both. I'm a matching type person most of the time. She then explained to me that they recommended different patterns on each orthotic so they were easier to tell one foot from the other. So, Gracie will have daisies on one foot and butterflies on the other. The technician also commented on how good Gracie was and she made fast friends with the receptionist.

After that we headed home and Gracie got to continue her nap. She was sleeping so soundly, it was such restful sleep. I hated to wake her, but she had an appointment with her pediatrician. She cried the whole way there...big crocodile tears because I had awoken her from this great sleep and she was still tired. Once at the clinic, she spied her favorite fish tank and practically yanked my arm off as she slid out of my arms and headed to the fish tank. She made friends with two gorgeous little Somali girls. I took note of the little girls' hairstyles for when Gracie's hair gets a little longer.

Today's visit to the pediatrician was to talk about speech therapy. She will have a speech consult in late March. More than likely they won't do anything right now, other than to have us continue to overtalk everything we do. The consult is to get Gracie access to the program so once she is old enough to benefit from it, we'll already be plugged into the service.

Gracie had a great evening. She was a little goofball jumping on her bed and falling backwards so mommy could catch her and then she would giggle. She splashed and splashed in the tub. That was great fun until she pee'd in the water. Oops.

Gracie fell asleep in my arms while she drank her nighttime bottle. I'm hoping for a peaceful night. By the way...Gracie is officially 19 months old now. Where did the time go?

Lisa, Jeff, and Gracie

Monday, March 2, 2009

Monday with Mom

Gracie had a really rough night, she cried out about every 15 minutes from 1 a.m. on. She rolled, she tossed, she turned, she just couldn't get comfortable. I would calm her each time by patting her back and letting her know that "mama" was right here. I think we were both happy for morning to finally arrive. She awoke bright and early at 5:15 a.m. Her fever subsided, but the diarrhea appeared. I stayed home from work to monitor the situation and give her some TLC. She was in a very good mood though and by afternoon was feeling much, much better. She ate a fairly good lunch. She got a lemon cookie for afternoon snack, this was a first and a HUGE hit!

Gracie took a 45 minute morning nap and a 2 hour afternoon nap. She awoke with lots of smiles this afternoon and was in a very good mood.

Tonight was bath night and as always was met with smiles and a great joy. She loves the water. We have to be careful that she doesn't get water in her ear tubes, but if that wasn't worrisome, I think she would be happy to dip her head in. She loves to lay tummy down and pretend like she is swimming. Although she also thinks it's fun to try to sneak drinks of water this way too. She knows that is a "no no", so tries to sneak them in when she thinks Jeff and I aren't looking. Crazy kid.

Gracie fell asleep in my arms drinking her night bottle and I'm hoping it is a more peaceful and restful night for her.

Lisa, Jeff, and Gracie

Sunday, March 1, 2009

Sunday...The Fever Continues

Mommy at the keyboard again tonight. Gracie awoke at 1 a.m. and still had a pretty high fever, so I gave her more Motrin and snuggled into bed with her. When she awoke at 7:30 a.m. (yes, she slept in) her fever was gone.

Gracie had a good day, but she was very tired and more restless than she has been in awhile. She was still very happy and had smiles. She listened to music today and we did alot of singing. Gracie took a 45 minute morning nap and just under a 2 hour nap this afternoon. She had a hard time settling down, but once she did, she snoozed hard. Gracie ate and drank today, but her appetite was definitely not the norm. She ate up her fruit, which is always a favorite, but really didn't have time for too much else. Gracie got fruit punch flavored Gatorade today for the first time. That was a huge hit. She drank two big glasses of it.

This evening just before dinner, Gracie's fever returned. She was very restless and things just weren't right in her world this evening. She's really mastering the word "mama". At one point tonight, I walked away for something and we heard this really long whine "mmaaaaaaaamaaaaaa". It was quite comical. I'm sure she didn't think so, but both Jeff and I did.

Gracie had a really hard time settling in for the night. She just couldn't get comfortable. She is now snoozing, but is still pretty restless. I pray for a healing sleep for her.

Lisa, Jeff, and Gracie