Thursday, April 30, 2009

Thursday - Probably a Virus

I had to wake Gracie up this morning and she was one sleepy girl. I find that if I sing to her and snuggle a bit, she wakes up in a much better mood. So that is exactly what I did and she had smiles and snuggles for mommy. Yay!

I was on my way to daycare with Little Miss Grace when I heard loud sounds coming from the backseat....oh no...diarrhea AGAIN. I pull into a local car dealer to verify, my nose confirms, so I turn around and head home. I get home, get Gracie out of her car seat and into the house for a diaper change only to find out her diaper is clean. False alarm. So I head back to daycare, now I'm running late, just as we are about there, I fear the same, but again false alarm. So Gracie hangs at daycare while I fly to work and am late for my first meeting of the day -- sorry Melissa.

About 10:30 a.m. I get a call from daycare that Gracie indeed does have the diarrhea again. This is a week now that we've been dealing with this, so I make an appointment with a pediatrician, unfortunately not Gracie's primary. I picked Gracie up from daycare and we headed home for a nap before her appointment. Oh and lunch too, which consisted of crackers and applesauce.

Our appointment is with a nurse practitioner that checks Gracie out and tells us...yes, you guessed is probably a virus. Since Grace was vaccinated for the rotovirus, she doesn't think it is that, but can't confirm The fact that Gracie has not vomited or had a fever makes us think that it probably isn't the rotovirus. Then we were told she could have the diarrhea for up to two weeks....NOOOOOOOOOOOOOOOO! That is not what I wanted to hear.

Gracie had a bland supper tonight and was very tired so not much play time after that. She was in one of those moods tonight where she tried to test our patience. Fortunately for her, mom and dad have ALOT of patience. She went to give me what I thought was a kiss on my cheek and bit me and wouldn't let go. Jeff had to come pry her teeth off of my cheek...OUCH. Jeff and Gracie had a battle of wills over the nightlight again. When she didn't get her way in her room, she went into our room to see if she could get that nightlight. Her plans were spoiled there too.

Gracie has been having alot more body jerks when she is sleeping. I really noticed this today. This is not a good thing and I attribute it to the Vigabatrin wean. We increase her Topamax on Saturday, so I'm hoping that will take care of it.

Gracie fell asleep about 7:45 p.m. and is sleeping, although she is quite restless. I hope it isn't a restless night.

Lisa, Jeff, and Gracie

Wednesday, April 29, 2009

Wednesday - A Kitty Says "Meow"

Gracie had a pretty good night. She cried out a few times but a reassuring "it's okay, mommy is here" was all she needed to settle back in to sleep. She awoke at about 6:15 a.m. this morning and was a little grumpy. If she doesn't have some snuggle time, she's not quite as happy when she gets out of bed. Gracie took her meds well and I gave her some Gatorade to drink. I went to the bathroom and when I returned, the walls, floor, and Gracie were soaking wet with Gatorade. She loves to shake her sippy cup so that the liquids go everywhere. She was so wet, I had to re-dress her to go to daycare.

Gracie was pretty snuggly when I dropped her off at daycare, but as soon as more kids started to be dropped off, she realized it was okay for mommy to go to work. When I picked Gracie up tonight she was working on climbing the stairs, but she really wasn't too happy about it. She was pretty tired tonight and almost fell asleep on the way home. She ate a pretty good supper, although still very bland...pasta in a chicken broth based sauce, toast, applesauce, and rice. So far so good.

Gracie splashed like a crazy girl during her bath tonight. She loves water! After bath we were in her bedroom getting her pj's on when she saw her stuffed kitten that says "meow" when you press it's foot. She has really taken a great liking to this kitty lately. Earlier in the week, she said "meow" when we were with the kitty. She mimics sounds but then we don't hear them again. Well tonight, she saw her kitty and said "meow" or her version, but you could tell what it was, about 10 times as she snuggled with it. Jeff was there to witness it too, so I'm not crazy.

I gave Gracie a bottle of soy formula tonight before bed. I hope she is able to tolerate this okay.

Good night to all.

Lisa, Jeff, and Gracie

Tuesday, April 28, 2009

Poopie Tuesday

The title of today's blog is for my friend Arlan, who informed me that I was getting a little too detailed about all the poop we've been seeing in our house lately!

Gracie had diarrhea again through the night, so needless to say I was up quite a bit changing diapers and lulling my big girl back to sleep. The nice thing about this is that Gracie actually wants to sleep, so is very cooperative and will just let me hold or snuggle her until she falls asleep. Morning came way too quickly.

Jeff had a light schedule at work so he spent the morning with Gracie at home and then he needed to go the civic center to set up for a conference in the afternoon and I took off work to care for Gracie. I walked in the door from work and was greeted by a dirty diaper. The nice thing was it was the last one I saw for the rest of the day.

Gracie took an hour nap for Jeff and slept for an hour and a half for me and probably would have slept longer, but I woke her up to go to her physical therapy appointment at the clinic. I debated on whether or not to cancel, but since she was doing good, I thought we would attempt it. It went very well and Leslie, Gracie's PT, worked her hard and was very impressed with many of her new skills. She felt that Gracie is definitely getting stronger in her legs, so our working with her is paying off. Leslie's first comment to us was "Did Gracie grow taller?" We laughed because when she got up this morning, both Jeff and I commented that it looked like she grew overnight.

All Gracie had to eat today was crackers, applesauce, and Gatorade and by supper time she was hungry. So we gave her some pasta in chicken broth, applesauce, a banana and she had some of my rice. It is a huge deal to be fed with food from mommy and daddy's plates.

After supper we took Gracie for a stroller ride and she really enjoyed that. Then we practiced having her walk in the grass, which really helps with her balance. She was one tired girl and could hardly stay awake while I dressed her in her pj's. I'm feeling the effects of a short night myself. I think I'll head to bed shortly.

Sweet dreams all.

Lisa, Jeff, and Gracie

Monday, April 27, 2009

Rainy Monday

Gracie awoke about 6:15 a.m. this morning and didn't really want to get up. She just wanted to lay in bed and suck her thumb and snuggle. Had we had more time, I would have let her have her way. Time was getting away from us, so I let her snuggle with daddy for a little bit and then it was time to get up and get ready for the day.

Jeff dropped Gracie off at daycare and I picked her up to find out that she had a pretty nasty diaper blow out. I took her home and we had another pretty messy diaper. I'm not quite sure what is going on. We ate a pretty bland supper. She ate a little bit, but boy did she guzzle the Gatorade. She drank like she hadn't been given fluids for days.

Gracie's physical therapist worked with her today. She worked on the balance ball today and left it with us to work on over the next couple of weeks. This is a neat one in that Gracie's feet touch the ground. She really did quite well on it.

Gracie enjoyed a bath tonight and splashed til the bathroom walls and floor were soaked. I can't wait to get her in a swimming pool this summer.

Gracie fell asleep about 8:00 p.m., but was very restless as she was trying to drift off. She seems peaceful now.

Lisa, Jeff, and Gracie

Sunday, April 26, 2009

The Weekend - Family Fun & Another Success

Gracie had a very good weekend. She slept well both Friday and Saturday nights and slept in both days til about 6:45 a.m. That was a treat for mom and dad too. On Saturday we just played and hung out til mid afternoon, then we headed to cousin Kayla's confirmation. I was Kayla's sponsor, so dad and Gracie hung out at the church. Needless to say they spent most of their time hanging out in the narthax. Gracie loves music and at the end of mass, went to get a closer look at the band. The guitar player took some time to meet Gracie and play a special song for her. In talking with her we found that she helps special needs kids through music therapy and could tell that Gracie is a special needs child. She was very nice and we were appreciative for the time she spent talking with us and Gracie.

After mass we headed to Kayla's house and had dinner with aunts Sheila and Cheryl, uncles Chris and Russ, cousins Kayla and Jason, Grandma Lucille and Grandpa Kenneth, and honorary Grandpa Don (I am convinced that Don's wife Marj, who passed away the day before Gracie was born at the very same hospital, is Gracie's guardian angel). Gracie had a great time playing with everyone, showing her clapping skills, listening to music. Jason played "Amazing Grace" on his recorder for Gracie and Kayla played the piano. Gracie doesn't move when this music is being played...she loves it. Then Auntie Sheila let Gracie play the piano. That was a hit. It was fun to watch as she began to realize that she was the one making the sound.

Today was a lazy day for Gracie, we never even changed her out of her pajamas. She awoke and had the diarrhea again today and didn't have an appetite for most of the day. Despite this she was in a great mood. She had a huge success today, she stood up from the floor all on her own. She had been attempting this for quite some time and today she did it. I, of course, was ecstatic and as I was telling her what a big girl she was, she was smiling and clapping for herself.

Later in the morning she was playing with her stuffed kitty. If you push the foot on this kitty, it meows. So I pushed it and after we were talking about the cat and how it says meow, as plain as day, Gracie said "meow". I wish I would have had a witness.

This afternoon I noticed Gracie had a big brown mark on her pajama top. I asked Jeff if she knew where that had come from and he said he gave her and M&M. I started chastising him for giving a child with diarrhea chocolate. I turned to Gracie and said "Gracie, did daddy give you an M&M?" I barely had that out of my mouth and as if on queue, Gracie very plainly said "No". It was hilarious! Gracie usually uses more of the "n" sound for her no's, but this was very well enunciated.

Gracie and I had a lot of quality time today and we worked on alot of skills. She also had two really long naps (about 2 hours each).

We also found out this weekend that Gracie loves piggy back rides!

Gracie is now sleeping peacefully after a great weekend.

Have a great week.

Lisa, Jeff, and Gracie

Friday, April 24, 2009

Feeling Good Friday

Gracie had a very restful sleep last night and awoke refreshed, happy, and feeling good. We put her in her highchair to get her meds and have a few Cheerios. As we were talking and goofing around she began to clap. We definitely have that skill down. This clap even made sound!

Gracie had a good day at daycare. She got to play outside and enjoy the warm weather. She also worked on her new clapping skills, while she danced. She is getting quite talented! She got to wear shorts today for the first time this season. She looked so cute with her little chubby legs showing. When we got home we played outside for a little while until daddy came home, then went in for supper. After supper we decided to go for a walk/stroller ride, but it became an abbreviated one as it had gotten quite cool. Gracie and daddy zoomed down the big hill a couple of times and Gracie's legs were moving before Jeff even started running with the stroller. The grin on her face was a mile wide.

We played a little bit before bed. She is getting very good at both catching and kicking her Winnie the Pooh ball.

Gracie fell asleep a little after 8:00 p.m. and is peacefully sleeping. Hopefully sweet dreams are in order.

Have a great weekend.

Lisa, Jeff, and Gracie

Thursday, April 23, 2009

Thursday - The Stomach Bug Hits

Who knew that as Jeff was telling about his title as diaper king once again, it was only a premonition of things to come. Gracie started out last night very restless, well I soon found out why -- the stomach flu had hit like never before. I think at last count we had 20 dirty diapers in less than 24 hours. Gracie was up most of the night with diarrhea. About the time she would settle back down to sleep, it would hit again. She was very lethargic and her eyes were glassy, it was obvious she didn't feel good.

Unfortunately Gracie wouldn't drink anything, but knowing we needed to keep her hydrated, we began syringing in water and Gatorade 1 ml at a time. She didn't want that at first either, but as soon as we would get her a little hydrated you could tell she would feel a bit better for a while.

Daddy and Mommy tag-teamed work and care giving today. I went into work in the morning and came home at noon and Jeff went in this afternoon while I stayed home with Gracie. When I came home Gracie had just woken from a 2 hour nap and was eating a couple of crackers and had a big smile on her face. She remained in a good mood for the most part and was a trooper. She took just under a 3 hour nap this afternoon and awoke feeling much better. She even had part of a banana and some pasta and chicken in broth for supper.

Gracie had a huge triumph this afternoon! She clapped her hands together, repeatedly and could do it if I asked her to a little later. Most children accomplish this skill at a much younger age. Gracie would not clap her hands and we worked and worked and worked on this with her. If she was excited she would hit her hands on her legs, but would not put her hands together. She would even hold onto our hands and put them together, but could not get the concept of clapping her own hands together by herself. Jeff had worked on this with her last night and she didn't do it. Today, I was playing patty cake with her, then got up to get something and I looked over and there she was clapping her hands together. A little later after she had stopped, I asked her to clap her hands and she did. Then tonight we took Gracie out for a stroller ride and she was loving being outdoors and she started clapping...she even made a clapping sound a time or two. She was soooo proud of her accomplishment and so were Jeff and I. YAY Gracie Girl! Her successes are soooooooooooo sweet!!!!

We spent a little time outdoors tonight and then put Gracie in the tub for awhile. All that diarrhea has give her a rash on her bottom, so we needed some soak time. She was exhausted by the time we got her out of the tub and I gave her some formula tonight before she went to bed. I hope I don't regret that.

She fell asleep but was extremely restless. I hope it isn't another restless night. She needs some healing rest.

Enjoy the beautiful weather.

Lisa, Jeff, and Gracie

Wednesday, April 22, 2009

Wednesday with Dad

This edition of the Gracie update is being brought to you by Jeff the dad. Lisa had to be gone tonite for Confirmation practice with cousin Kayla, leaving dad and Grace on their own.

The day was good. I was the drop off and pick up person for daycare today. Grace did pretty well. She did her best to shame me into not leaving this morning, until I told her that all of that "guilt" business works better on mommy than on dad (I just hope she keeps believing it for a few days). Grace had a good day at daycare and that good mood extended well into the evening.

We played ball - she loves to have you toss or roll the big ball to her and then she'll "kick" it back to you (more of a shove really - but it works for me). Grace wasn't terribly hungry at supper time. We did eat all of our meds, but after the Mandarin Oranges, the rest of supper must have been hum-drum. We did enjoy pouring our applesauce in our lap (thank goodness for the Crumb-Chum bibs - extra long and have saved the day on more than one occasion!).

I don't know if Lisa mentioned this, but for a short while, she was the messy diaper queen - in our ongoing contest of who has changed the worst diaper. Well - NO MORE!! I believe I have again regained my title - although there are no corroborating witnesses - as the messy diaper KING! And for you parents out there - a question - why is it that the messier the diaper, the more they want to crawl away and roll around midway through the change? Is there something in their little brain that just knows? What is it?

Lastly - Gracie had her first "unsupervised by mommy - dad bath" tonite. I must say that it went pretty well. Grace had a blast - as usual - splashing like mad. I was soaked at the end of our time. She got out of the tub and dried off with no fuss too. Lisa wonders why it is that Grace gave me a pretty easy time, while giving momma heck. The reason: because God does not give you more than you can handle!

Grace fell asleep on my lap and is now down for the night - sleeping peacefully.

Good night to you and your family.

Jeff, Lisa, and Gracie

Tuesday, April 21, 2009

Tuesday - Busy Girl

Gracie woke up at about 5:45 a.m. this morning and was quite the snuggly girl. Once she got out of bed, she was daddy's girl. She helped daddy brush his teeth and pretty much followed him around or wanted to be held by him until he headed to work at 6:00 a.m.

Gracie has learned that shaking her head from side to side means "no". Unfortunately, she has been clamping her mouth shut and doing the "no" shake on me the last two mornings when I want her to take her meds. She's getting harder to convince that eating them is a good thing.

When I dropped Gracie off at daycare, she was especially snuggly and held on tight. I think she is going through a phase where she knows how to make mommy feel guilty. Is that a kid requirement class - How to make mom feel guilty 101? Hmmmm.

Daddy picked Gracie up at daycare and brought her to the clinic for her occupational therapy appointment this afternoon. Gracie was a wild kid in the lobby waiting for our appointment. She walks around the lobby like she owns the place. She has been there so often it feels like home and all the desk staff and therapists know her and treat her like a princess.

Gracie did pretty good during OT, although she has a pretty short attention span, especially when other little kids are around. It's just too much fun to see what they are doing. Gracie had a great time with the full length mirror. She kept giving herself kissies and then would look back to see us laughing, would smile herself and then go back to giving herself more kissies in the mirror. I think she has a future on stage. She danced a little in the mirror too. Otherwise she worked on pulling pop beads apart, popping bubbles, bouncing on the big balance ball, and played with some musical toys.

We also found out that our insurance approved Gracie's wheelchair -- yay! They took a little longer than normal, but our circumstance is a little different than most. Our physical therapist and PM&R physician supplied them with quite a bit of documentation to get the approval. We should have it in about 5 to 6 weeks.

Gracie was a pretty happy girl tonight, but was pretty tired and did a little snuggling with dad. She was asleep by 7:45 p.m. and is snuggled in bed, hopefully having sweet dreams.

Wishing you all sweet dreams too. We pray that all is well with you.

Lisa, Jeff, and Gracie

Monday, April 20, 2009

Monday - Dancing Girl

Gracie slept very well last night and in the early morning rolled over and snuggled in. At one point she layed her head on top of my head and that is how she slept until I had to get up to take a shower. She awoke at 6:30 a.m. and was a happy girl, but still seemed sleepy. After meds and getting dressed, I put her back in bed and snuggled with her until Emily, her early intervention teacher, arrived.

Gracie was happy to see Emily and sat on her lap and played and sang. Emily brought a monkey puppet along and Gracie showered the monkey with kisses. Gracie was quite tired when I dropped her off at daycare and as I was ready to go I looked down and she had big crocodile tears running down her face. That tore at my heart. She took a nap shortly after I left and woke up a happy girl. She showed everyone at daycare her dancing moves when they put on some golden oldies music.

When I got home, Gracie was very excited to see me and as is the standard custom, we snuggled for about 10 minutes before we started cooking supper. Gracie had a good night and had lots of smiles. She was a wild girl in the tub and splashed and splashed.

At 8:00 p.m. she was ready for bed and has been sleeping peacefully.

Wishing you all a peaceful night.

Lisa, Jeff, and Gracie

Sunday, April 19, 2009

Sleepy Sunday

Gracie had a good night, I awoke at 2:00 a.m. and realized I hadn't been awoken by her since I fell asleep, which means she pretty much stayed in one place. This never happens. She slept until 7:00 a.m. and awoke in a happy mood.

Once again, Gracie decided it was great fun to keep her mouth clamped tight when it was time for her meds this morning. I find that if I don't try too hard, I can get her to take them a little while later without too much problem.

Gracie was so tired, that by 9:15 a.m. she was asleep again and slept until 11:00 a.m. She ate a light lunch -- I think her appetite is decreasing even more and she would much rather drink her lunch than eat. Although if there is fruit on the menu (and there always is) that disappears quite quickly.

After lunch, we shopped for a bit and Gracie was a good girl, but was not in a cart or stroller and felt the need to touch everything in her path. She also took a little bicycle for a spin, with mom & dad's help. She quite enjoyed that.

We worked on a number of things today, going up on our tippie toes which is suggested to strengthen her leg muscles, standing from the floor (we can do this with help, but not quite by ourself yet), we worked on release of toys - still not loving to do that, we worked on identifying objects, such as baby and book, and we also rolled the ball back and forth (that was a big hit and she has got the concept of rolling it back, so in a way I see this as release skills).

By 3:00 p.m. she could hardly keep her eyes open and took a 2 hour nap. I snoozed for part of that with her and when she woke up she was very snuggly.

After supper we all played and just hung out as a family. I think Gracie was loving having both mom and dad's attention. Jeff got up to walk out of the room at one point and she was not happy about it.

Gracie fell asleep about 8:30 p.m. and is sleeping peacefully.

Have a great week.

Lisa, Jeff, and Gracie

Saturday, April 18, 2009

Saturday - Fun With Family

Gracie had a restless night of tossing and turning. Finally she snuggled in just as I needed to get up to take a shower. Go figure. Gracie woke up about 6:30 a.m. and snuggled with cousin Kayla for awhile before getting up. Gracie loves her snuggles in the morning.

Since she had an audience, Gracie decided to not open her mouth for her meds this morning. It took some coaxing to finally get her mouth open. She can be such a tease sometimes. Gracie had a great morning playing with Aunt Sheila, Uncle Chris, and cousins Kayla and Jason. Gracie also liked watching Sandy, the yellow lab, out our deck window and Sandy seemed to like her too.

Gracie took a very short morning nap, I think she was too excited to sleep with people to play with at our house. Gracie showed off her dancing skills and did a little "cooking" with Aunt Sheila.

After lunch, our refugees (as they called themselves) went home and Gracie, mommy, and daddy all took a nap. Gracie woke up, but none of us were ready to get out of bed, so we just played and snuggled for awhile. About the time I was going to take Gracie outside for a walk it began to rain, so we played indoors instead.

We started the reduction of the Vigabatrin for Gracie today and this evening she had an absence seizure on me. It was fairly short, but I'm hoping this isn't a sign of things to come. She was much more jittery and restless this afternoon too. We were warned this could happen as she starts the reduction. I wonder if the restlessness might be in part that our company was gone and she was used to lots of activity and attention.

Gracie splish-splashed in the tub tonight and was ready for bed at a little after 8:00 p.m. It took her a while to settle down to go to sleep, but is very peaceful at the moment.

We hope you are all having a good weekend. We are enjoying the nice calming rain.

Lisa, Jeff, and Gracie

Friday, April 17, 2009

Friday - We Have Visitors

Gracie had another good night. She awoke this morning at about 6:00 a.m. She wasn't sure she wanted to be awake quite yet, but soon was a happy girl.

Gracie was quite snugly when I took her to daycare. She knows how to make mommy not want to leave! When I picked her up at daycare this evening, she was lounging outside drinking a yummy bottle of gatorade.

Gracie was so tired this evening and grumpy. That is until Aunt Sheila, Uncle Chris, Cousins Kayla and Jason, and puppy dog Sandy came to visit for the night. They were evacuated from their home due to a big fire in the community. Gracie snuggled with them and when it was bedtime, Auntie Sheila snuggled into bed with her until she fell asleep.

Sweet dreams.

Lisa, Jeff, and Gracie

Thursday, April 16, 2009

Thursday - We've Got a Shiner!

Gracie had another good night. After starting out restless, I thought it might be a rough night, but it was not. I ended up waking Gracie up at about 6:20 a.m. I find that if I sing Harry Belafonte's song "Day-o" to her, she awakes in a pretty good mood.

I had to go back to work today and Gracie went back to daycare. I was excited to hear that Gracie joined all of the other kids today in running and screaming. Usually she sits back and observes, but today she was right in there with them. Go Gracie!!!! Gracie had a little accident today at daycare, her foot caught on the carpet, she lost her balance, and fell into the corner of the coffee table. She has quite a shiner on her eye. Gracie also got to go outside and play today. The fresh air does wonders for her.

Daddy picked Gracie up at daycare and then got to go visit our friend Wayne for a little bit, but she was too tired to do much socializing.

Gracie was very excited to see me come home tonight, but I was taking care of a leaking 2 pack of soymilk and didn't get into the house fast enough. She cried and cried and cried, until Jeff finally brought her outside so she could be next to me. After I got that taken care of and my hands washed, Gracie clung to me and snuggled for a good 10 minutes before she was ready to think about anything else.

Gracie ate a good supper, complete with a few M&M's for dessert. After supper it was bathtime, which was a big hit. She splashed and splashed and splashed.

Gracie fell asleep about 7:45 p.m., I put her to bed and she hasn't moved a muscle since. She was exhausted. All that fresh air must have tired her out.

Lisa, Jeff, and Gracie

Wednesday, April 15, 2009

Wednesday - Happy Girl and Good News

Gracie had another great night and slept in until 7:00 a.m. When she awoke she was in a great mood and that was the theme for the day. Gracie was still in her jammies when Emily, ECSE teacher, came to work with her. Gracie had snuggles, hugs, and lots of smiles for Emily. The rest of our morning consisted of errands...going to the post office, the floral store, the mall, etc.

By the time we got home Gracie was almost too tired to eat lunch. Please note, I said "almost". She ate a pretty good lunch and then went down for a two hour nap before we headed back to the clinic for afternoon appointments. Her first appointment was physical therapy. Gracie worked hard, she worked on standing up by herself, climbing stairs upright, and did some time on the treadmill. As a reward for doing such a good job, she got to go down the slide two times. That was a hit.

After PT she had a follow-up appointment with her pediatric neurologist. Gracie was very happy to see Dr. N., gave her a hug, and insisted on sitting on her lap. Gracie weighed in at 38 lbs. and we weren't suprised to see that she had grown taller. She is now 37 inches tall. Gracie is doing great from a neurologic perspective. We got the go ahead to start weaning her from Vigabatrin over the next five weeks. With that wean, we will also increase her Topamax. We are thrilled to say goodbye to the Vigabatrin -- if you remember this is the med that they don't like to keep anyone on for more than 6 months as it can cause peripheral vision damage with long-term usage. Gracie has been on it for 4-1/2 months, so we are anxious to begin the wean.

The other good news we received was that we don't need to do a follow-up EEG. In January when we found out the I.S. was gone, her EEG also showed a very slow background. We know that Gracie has delays with the Sotos Syndrome, but this was showing even more slowing of the brain activity. We were to do a follow-up after 6 months when she had been off of most of the meds. Since Gracie is making so much progress and is learning new things, both cognitively and with motor skills, there is no need to do the follow-up EEG. YAY! YAY! YAY!!!

Gracie was so tired after all of her appointments that she fell asleep on the way home. I took her out of her car seat and carried her into bed without her waking. I let her sleep for an hour before waking her at 6:45 p.m. I think she may have slept the night through had I let her, but she needed meds and supper. Gracie and I played into the evening and she finally fell asleep again about 9:30 p.m., but it is a restless sleep. Hopefully she'll have a good night.

I had a great two days off with Gracie. Although we had a lot of appointments and did alot of running, we also had many smiles, laughs, and chances to play and read. It will be very hard to go back to work in the morning.

Wishing you all a great evening and enjoy the sunshine!

Lisa, Jeff, and Gracie

Tuesday, April 14, 2009

Tuesday - Appointments

Gracie had a GREAT night. She slept the whole night through and was not restless at all. She awoke at 5:45 a.m. in a snuggly mood and we had a good morning. By 8:00 a.m. she was ready for a nap and slept for about 40 minutes. Then we headed to the clinic to meet with Gracie's physical therapist and reps from Rehab Design, which is where we will get Gracie's wheelchair from. They were great and Gracie was in the best mood for them. She cooperated nicely and then the time came for the toughest decision of all. They handed me a ring of color swatches to pick out her wheelchair color. The hot pink called my name, so did the bright orange, which is Gracie's favorite color, but in the end I went with an opal black - sort of a shimmery color. This wheelchair can be adjusted so that should she need it when she is 16 or 17, this will still work for her. That is the reason I didn't go with pink, I thought she would hate me if she was 16 or 17 and sitting in a pink wheelchair. When we left, I asked Gracie to say "bye, bye" and she waved all on her own. She started this on Sunday at Easter and has consistently done "bye, bye" when asked every time since, with the exception of when I leave the house...cause then she is usually fussing that I'm going.

We stopped in to see a few friends from work after our wheelchair measuring and showed them both our smiles and how we can fuss. I could tell Gracie was getting hungry, so we ate a couple of crackers and headed home for lunch. Gracie was so tired, I wasn't sure she would stay awake through lunch, but she managed to do so. She was asleep by noon and slept 2 hours before I had to wake her.

Then it was back to the clinic for an assessment with a speech therapist. The therapist had a lot of questions about what Gracie could do and Grace explored the room while we did so. At one point she was asking us about following commands and then also about whether or not she clapped. Jeff answered the question saying she hates clapping her hands and telling the therapist that she hates to even put her arms over her head. As if on cue, Gracie was at the table where we were talking and raised up one of her hands. I think she wanted to prove daddy wrong. So I figured, hey let's see if she'll do "so big" (she hasn't done this for us since way before her infantile spasms started). So I asked her "How big is Gracie?" Sure enough, both arms went high in the air and a big smile came across her face. Gracie was assessed at a 9 - 13 month old level in her language and communications skills. The therapist gave us some great ideas on how to work on words and communication with Gracie. We'll work on these things over the next 6 months and then will return for a follow-up assessment. The assessment at 9 - 13 months old was actually encouraging, especially when you realize that she has been on some major drugs for the last 5 months and had been dealing with Infantile Spasms, a disease that hinders development.

This was the first therapist that we have worked with that has had experience with children who have Sotos Syndrome. It was good for us to talk to her and she was very encouraging about Gracie's skills. It was a little disheartening, though, to hear that the Sotos patients she has worked with have a really hard time mastering speech due to tongue control and facial tone. Time will tell for Gracie. She has amazed us through other trials, we'll just continue to work with her and time will tell.

When we got home tonight we played outside for quite a while. It was so nice out and we even visited with our neighbors. Everyone wanted to be outside. After supper mommy had to go to work for a little while and Gracie and daddy took a stroller ride outside until Gracie was too tired to enjoy it. Mommy got home just in time to put Gracie to bed. Sweet dreams. Gracie needs her rest for more appointments tomorrow.

Lisa, Jeff, and Gracie

Monday, April 13, 2009

Monday -- Back to the Routine

Gracie awoke at around 6:15 a.m. this morning, but was still sleepy, so just layed in bed sucking her thumb and enjoying some snuggles with daddy, and then mommy. Once she was ready to get out of bed, she just rolled herself off of her mattress instead of climbing down. What a goofball. She was in a good mood and had tons of smiles for us.

It was Gracie's first day back at daycare since her bout with croup. Daddy dropped her off and I think she had a good day. I picked her up at 3:30 p.m. and had to scoot pretty quick as Gracie had physical therapy at our house at 4:00 p.m. Gracie was in a good mood the whole way home and when we got home walked out to the mailbox with me to get the mail. She quite enjoyed being outdoors.

Sandy, the physical therapist, worked on balance with Gracie, as well as doing some stretches with her. Some of the movements are outside of Gracie's comfort zone, so she gets a little upset and has to have hugs occasionally. We are anxious to get Gracie outside on the grass to help her with balance as she walks on the different levels. Her helmet will come in handy again as we get her outside on both the grass and the cement.

Gracie was a very good girl as I made dinner tonight. Usually she wants to be right up by the stove watching or being held. Tonight she sat on the floor eating crackers, drinking Gatorade, and listening to music. She ate a good supper and then it was bathtime. She kicked and splashed for a good 10 minutes. I would have been exhausted, but she was having the time of her life. Good exercise too. She was all smiles.

I'm off with Gracie for the next two days as we have alot of appointments at the clinic -- nothing of concern, more assessments and follow-ups. Her first appointment tomorrow is to get her measured for her wheelchair. That should be interesting.

Gracie was asleep by 8:00 p.m. tonight and is sleeping peacefully. I'm not far behind her.

Lisa, Jeff, and Gracie

Sunday, April 12, 2009

Easter Sunday - I Love My Family

Gracie awoke at around 6:45 a.m. in a great mood. Little did I know, that would be the theme for the day. Gracie had lots of smiles and patience as we prepared, loaded the van, and got ready to head to Grandma & Grandpa's house for Easter dinner.

Gracie fell asleep in the van about halfway there, so she had about a 30 minute morning nap. Once we got there she was a little tired, but it didn't take her long to warm up to Grandma and Grandpa, especially since Grandpa turned on the ceiling fan for her (one of her great loves). Then Auntie Cheryl, Uncle Russ, and cousins Julie and Crystal arrived. Yay!!!! She had all the attention a 20 month old could dream of. Then Auntie Sheila and cousins Kayla and Jason arrived. Yay!!! More attention. Gracie showed off her smiles, hugs, and walking skills.

About 3 p.m. Gracie took a 45 minute nap to prepare for the big Easter Egg hunt. We bundled her up and took her outside to find eggs. I think just being outside was more exciting than actually looking for the eggs. She was spoiled with M&M's, Fruit Loops, whale crackers, mints, chapstick, stickers, and even money for her piggybank!

Auntie Lana, Uncle Jim, and Cousins Brent, Katie, and Jayme arrived in time for the Easter egg hunt and yes, there was even more attention to be had by little Miss Grace. She was in her glory to have people to play with. I think she even forgot that mommy and daddy existed for awhile. At one point, Brent and Gracie came in the kitchen and she looked at me like "Hi Mommy, when did you get here?"

She was in a great mood on the drive home, I could just tell she had a good day. It did my heart good to see her having fun with family and being social. At Christmas time, the last time we were all together, she was on steroids and wanted to be held most of the time and wouldn't let me out of her sight. She has come so far and at this time of renewal I praise God for her being I.S. free.

Gracie fell asleep midway home. I took her out of her car seat and put her in bed upon our arrival at home and she has stayed sleeping. I think she was just plain tuckered out.

God Bless You All,
Lisa, Jeff, and Gracie

Saturday, April 11, 2009

Saturday Fun

Okay, the title's a tad misleading. The day didn't start out as fun. Grace awoke with a fever about 2:45 this morning. After getting some medicine, Grace decided that she and mommy should walk around the house for about an hour and a half before re-settling into bed.

Grace then slept until 8:50 this morning, and was in a pretty good mood for most of the day (the fever was gone too). After lunch, Grace took her one and only nap of the day - and then . . . when mom went to Target, Grace and Dad (that would be me) went for a ride in our new wagon. Well, actually, it's not new - Grace got it as a Christmas present, but other than driving around in the basement, this was it's first trip/ride. We rode around the neighborhood - actually one of us rode, the other pulled (guess who did which). Grace just had a ball riding the the back of the wagon. Every time that I would stop to ask, "how you doing back here," I was answered with smiles and giggles.

Grace and mom then came to the Easter musical, Alive Forever, that dad was performing in (I was "loud guy #4" - in the choir). Grace was a good girl throughout. Her favorite parts were the music (imagine that) and she would get a little restless during the dialogue, but as soon as the music started - she snapped back to attention. She was really good for nearly an hour and a half - and that is a long time for a little kid. Mom and dad were both proud.

Grace is now sleeping soundly, or as soundly as one can sleep with draining sinuses. Her nose is gurgling (Oooh GROSS - did you need to tell us that?? yes, I did - sorry).

Have a great Easter, drive safely. He is risen!
Jeff, Lisa, and Grace

Friday, April 10, 2009

Good Friday

Today was a pretty good day for our Little Miss Grace. As Grace was possibly still contagious, we decided to keep her home from daycare one more day. Since I (that would be dad) was already off for the day - it was a pretty easy decision.

Grace was in a real good mood for the whole day. Even when she was tired (usually her cranky time) she was pretty cheery. We had 2 naps today, consisting of about 2 hrs in the morning and a little over an hour in the afternoon. Lunch was great! We had tuna casserole, followed by a favorite lunchtime activity - luring dad in under the guise of being nice and then smearing Tuna Helper and noodles on his face. Oh yeah! That was fun - messy, but fun.

Grace has found a new type of music that she really likes. Move over Brad Paisley, Harry Belafonte is now the king. I'm sure that Mr. Paisley is still up there in Grace's top ten, but with a song like Day-o (the Banana Boat Song), how can you go wrong with Belafonte?

Grace was wired tonite. She was still awake at 9:00 when I got home from my play performance. She was having fun visiting with Auntie Arlene, Uncle Dave and cousin Brandi, who came to town to see the play. She finally went down around 9:50 or 9:55. Maybe she'll sleep late on Saturday morning. These days, sleeping in for us is 6:00 a.m. - so let's hope.

Have a great weekend. Happy Easter to all.

Jeff, Lisa, and Gracie

Thursday, April 9, 2009

Thursday - A Productive Cough

Gracie's night started out pretty good, but she got restless again toward morning. She slept until about 5:30 a.m. Since I was staying home with her this morning we just snuggled in bed for awhile. She loves this. When we have time to snuggle she gets out of bed in the best mood!

I've come to find out that Gracie just isn't a breakfast eating girl. She'll eat just enough to get her meds in her and I'm very thankful for that. Her appetite was a little lighter today than normal, but she still did okay.

Gracie is on the mend. She didn't have a fever at all today, but is still very tired and she coughed more today than yesterday, but it seems to be a much more productive cough and not that seal barking sound.

Jeff and I took shifts again, he worked this morning and I stayed home and then he came home and I worked the afternoon. So Gracie got mommy and daddy time.

Gracie was invited to an Easter egg hunt outside today at our neighbors house (thanks Bridget - that was so sweet) but with her cough we decided it was best to keep her inside and away from the other children, so as not to spread her germs.

Gracie especially enjoyed her bath tonight. She kicked and kicked and kicked in the water, laughing the whole time. She was out of breath when she was done. She tired herself out too, we dressed her in her jammies and she was ready for beddie by time. She is now sleeping peacefully and seems to be breathing peacefully as well.

Lisa, Jeff, and Gracie

Wednesday, April 8, 2009

Wednesday - A Trip to the E.R.

Gracie had another restless night, a fever, extremely labored breathing, and a cough that sounded like a seal barking. At 2:45 a.m., I was convinced her pneumonia had returned, so we bundled her up and headed to the Emergency Room. I've come to realize that with Gracie, you don't wait to see if things get better on their own, because they don't. The E.R. staff was phenomenal. We loved the resident and the nurse that were there. I also realized that at 2:45 a.m. there really isn't any waiting time, they get you right in. We were relieved when the x-ray came back looking good -- no pneumonia. The diagnosis was croup. They gave her a dose of steroids to keep her airway from narrowing and sent us on our way. We got home at 6:00 a.m. and Jeff had to be to work at 6:30 a.m. -- he zoomed.

Gracie slept a good part of the day. She was in a good mood at times, but when her energy level was low...beware...we always know when she is tired. I stayed home with her in the morning and Jeff stayed home with her this afternoon. We'll tag team again tomorrow as she is contagious and the E.R. doc said she shouldn't go back to daycare until Friday. Her fever is under control and her appetite was fairly good -- a little lighter than normal. Didn't really want too much to do with formula, but was happy to drink lots of orange Gatorade.

When I got home from work Gracie was tired and hungry and grumpy. I bounced and calmed her while daddy made supper. After supper she was daddy's girl again. I'm told he got a few kissies today. She is starting to initiate them all on her own and daddy definitely gets the majority of them. Gracie thinks it is extremely funny when I beg for kisses or tell her not to give all of her kissies to daddy and to save some for mommy. She is just a little tease and giggles at this.

She had a hard time falling into a deep sleep but is now resting comfortably and her breathing sounds good. She just amazes me with her strong spirit and her ability to smile when she is feeling rotten. I look at her in awe and just feel so blessed that she is a part of our family.

Wishing you all good health!

Lisa, Jeff, and Gracie

Tuesday, April 7, 2009

Tuesday - OT & NT

Gracie slept quite well until about 2:00 a.m. and then she was in restless mode again. She tossed and turned and tossed and turned and tossed and turned. When she was done tossing and turning, she tossed some more. She awoke at a little after 5:00 a.m. and was in a good mood once she came out of sleepy mode. She is not a cheery girl immediately upon waking -- she takes after her mom in that regard.

Gracie had a good day at daycare and climbed the stairs for daddy when he arrived to pick her up. Jeff zoomed back to the clinic with Gracie as she had occupational therapy. We will begin trying to help her have more awareness of her mouth and work on muscle toning there. Gracie is still quite the drooler and I understand that is due to poor facial muscle tone that goes along with her Sotos Syndrome. Gracie made some new friends in the lobby while waiting for OT, she is such a social little girl. She just loves to meet new people and people are so gracious when she walks up to them. At the end of OT she became the "kissie monster" and smothered Jeff in wet slobbery kisses.

Gracie and mommy had a good night together as daddy was at play practice. I think I have her back to being mommy's girl again. At least for a little while. She fell asleep about 8:00 p.m., at 8:30 p.m. I heard her let out a blood curdling scream. She was having a night terror. We haven't had one of those since her diagnosis of epilepsy and all of the meds. I'm not sure if this means she is getting back to normal or if something else is going on. She cried, screamed, thrashed and couldn't be comforted for about 10 minutes. It was hard to hold her during one of these when she was 6 and 9 months at 20 months old, 3 feet tall and almost 40 pounds, she is even harder to hold when she is moving wildly and screaming. There is so much controversy on what to do for the child during one of these, some say not to hold them. I find Gracie usually does better and they are over more quickly if I do hold her and bounce.

She is now peacefully asleep and I hope that she has a good night of peaceful sleep.

Lisa, Jeff, and Gracie

Monday, April 6, 2009

Monday - We have a climber!!!

Gracie had a terribly restless night again last night. I think she is coming down with another cold and it was harder to breathe. She woke up in a groggy, grumpy mood and was once again daddy's girl. That would make day three of daddy not being able to do any wrong. Grace ate her Topamax (permanent epilepsy med) without any problems, then it was time to eat her Vigabatrin...she ate the first spoonful...but held the second spoonful in her mouth and thought it was great fun to spit it out.

Jeff dropped Gracie off at daycare this morning and she was a bit clingy. After a weekend of having mom and dad all to herself, she thought daddy's shoulder was comfy and wanted to stay there. When I arrived at daycare to pick Gracie up, I was told not to go down the stairs to get her...instead my big girl crawled up the steps by herself to greet me. She was grinning the whole way. Jeff and I have been working to get her to go up the stairs for months!!!! Barb and Michelle worked on it for less than 30 minutes and she was zooming.

Gracie had a good night, she was tired but very smiley and happy. She was a complete tease at supper time and had a great time trying to "get" mommy after supper. She was snuggly too. She fell asleep at 8:00 p.m. and is snoozing restfully at the moment.

Lisa, Jeff, and Gracie

Sunday, April 5, 2009

Sunday - Another Fun Family Day

Gracie had another restless night. She just couldn't seem to get comfortable. There were times when she would roll over and then roll on top of me so that her head was laying on my face. She seemed to think that was comfortable for a little while. That made one of us. She awoke at 6:00 a.m. When she awoke, Gracie and I were snuggling and "talking", when she heard daddy get up and go to the bathroom to take a shower. She was very unhappy that he passed by her bedroom door but didn't come in. So we called to him and then he joined us in Gracie's bed for a few kissies and snuggles.

We all ate breakfast together and then went to Jeff's church for Sunday service. Service was at Gracie's nap time, so she was very tired. She was a very good girl though. This makes two weeks in a row that we didn't have to take her out during service for acting up. She did help sing! Then she showed off her walking skills to some members of the band. The highlight of church for Gracie was the sugar cookie she got afterward. She didn't want to lose a crumb of that. I do believe this is the first sugar cookie she has ever had and it was a hit.

Gracie could barely stay awake til we got home. She fell asleep at 11:00 a.m. and slept peacefully until 1:45 p.m. She awoke in the best mood. She was full of smiles and energy. We played all afternoon and she also got to watch "Gymbo" her favorite videotape. That is always a hit. Gracie continued to let us know when we needed to put music on in the house. That is always sure to bring smiles.

Gracie had a bath this evening and enjoyed that but I didn't see too many splashes. She was also eager to get out again. She was a tired girl tonight and fell asleep at about 7:45 p.m. and hasn't moved since I put her in bed.

Wishing you all a great week.

Lisa, Jeff, and Gracie

Saturday, April 4, 2009

Saturday - Family Day

Gracie had a pretty good nights sleep, not nearly as restless as the night before. She let mom & dad sleep in and didn't wake up until 6:15 a.m. That felt great!!! Gracie awoke in a very good mood and remained that way all day.

Gracie had her bath this morning, but didn't seem to get into it as much as usual. She was ready to come out, which was a switch. Usually she puts up a big fuss when she has to come out. The rest of the morning was spent just hanging out with mom & dad, lots of snuggling and lots of kisses today too.

Gracie took an hour nap this morning and a 40 minute nap this afternoon. She ate a good lunch and now likes to finish her meal with 2 or 3 M&M's. I think she is developing her mom & dad's sweet tooth!

Later this afternoon we took her to Sam's Club with us and she was a very good girl. She was a good helper and carried a bag of candy for us. Then we ran to Jeff's church to drop off a few things and their worship band was practicing, so Gracie went in to say hello.

It was a good day of just hanging out as a family. We read, we sang, we played, we even watched our favorite video "Gymbo"!

Gracie fell asleep at about 7:30 p.m. Usually I hold her for a while after she falls asleep and just look at our precious little girl, but tonight she wanted to stretch out and wasn't snuggly, so I put her into bed and she hasn't moved a muscle since.

Lisa, Jeff, and Gracie

Friday, April 3, 2009

Friday - Physical Therapy

Gracie had an extremely restless night. She tossed and turned constantly. She wouldn't lay in one position for more than a few seconds. Needless to say, I woke up exhausted, but she amazingly woke up and was in a great mood. She awoke about 5:30 a.m. She was more than happy to take her meds with pureed peaches and ate them all up. The rest of her breakfast consisted of one Cheerio.

Daddy picked up Gracie from daycare early today as she had physical therapy at the clinic. She was in a good mood to start, but got tired very quickly. She cooperated nicely. She spent some time working on her balance on a balance ball. She also got to ride a tricycle (actually she didn't pedal, but used her feet). She has going backward down to a science, but was not happy when Leslie (PT) tried to help her go frontward and got even madder when mommy or daddy didn't come to her rescue. Leslie also recommended that we get Gracie a wheelchair, rather than use her stroller. Gracie's muscles aren't strong enough for her to walk long distances, the wheel chair would offer a better upright sit for her and can be adjusted so that she could be taught to get in and out herself. Leslie will be pursuing this with Gracie's PM&R physician.

Gracie, although tired, was a very happy girl tonight. She had a lot of smiles and teased her daddy a bit at supper time. Gracie had leftover pasta for supper and was eating, while Jeff and I were waiting for a pizza to get done in the oven. We have a bowl of M&M's on the kitchen table and I grabbed a few as I was putting more pasta on her tray. She started to fuss big time and then I realized I had M&M's and Gracie wanted some. So I gave her one and she was a happy led to two, three, maybe even four. Usually I bite them in half, but she proved to me tonight that she could eat a whole one at once. I know Auntie Cheryl will be happy to hear that...she thinks Gracie should be treated to M&M's on Easter!

It took Gracie about two seconds to fall asleep tonight. She was a tired girl. She is now in dreamy land and after last night's restlessness, I'm not far behind her.

Lisa, Jeff, and Gracie

Thursday, April 2, 2009

Thursday - Happy Girl

Gracie awoke about 5:30 a.m. this morning. When I got out of the shower she was sitting with daddy eating little bits of his bagel. She was a happy girl as we got ready for work and daycare. She was quite a little teaser this morning. She loves to tease me and then give me a big smile. I think her favorite is to just walk away when I'm trying to dress her.

Daddy picked Gracie up at daycare, so they had some good play time together. They even took a stroll outside, but Gracie was kind of tired, so didn't enjoy it as much today as she usually does. Gracie was excited to see me when I got home from work and demanded her usual 5 - 10 minutes of being held and snuggled, which I am only too happy to do. Then daddy left for play practice at his church and Gracie and I had the house to ourselves. She ate a good supper -- but it was her favorite meal, pasta! She loves to tease me by holding the spoon inbetween her teeth when I feed her applesauce. She holds on with all her might and when I ask her if she is teasing mommy she looks me straight in the eye, with a twinkle in her eye, and gets a huge grin...but not so huge that the spoon is let go.

Gracie was in a very good mood. We sang, read books, Gracie mastered being able to make the music play on her Noah's Ark. Then we looked at some of Gracie's baby pictures. She loves to look through them and have me tell her who everyone is. She loves me to point out "Baby Gracie"!

Gracie fell asleep about 7:45 p.m. and she hasn't moved since I layed her down in her bed. I'm hoping she has a good night.

Lisa, Jeff, and Gracie

Wednesday, April 1, 2009

Wednesday - Laughs and Giggles

Gracie awoke bright and early - 5:30 a.m. - and was in a good mood. She took her meds just fine, but now thinks it is great fun at breakfast time to drink her milk and then let it come back out of her mouth like a little geyser. Actually breakfast time doesn't consist of food, she will take her meds with a little applesauce or pureed fruit, but wants nothing else to eat.

Gracie's appetite continually decreases. Ever since her stomach bug this weekend, she doesn't have a huge appetite. I've also been doing a little chatting with some other I.S. parents and many of them have had their children go through a phase when coming down from steroids of not wanting to eat anything. So I'm feeling fortunate that Gracie is intaking food and soy formula.

Daddy picked Gracie up from daycare and was on supper duty as I met with our tax accountant (nothing like waiting til the last minute to get taxes done). When I got home, I couldn't get my coat off fast enough, she wanted some mommy snuggle time. I was only too happy to give her as many snuggles as she wanted.

Tonight was bath night. Gracie had a good time in the tub, but insisted she was going to drink her bath water. I insisted she was not going to do so. She didn't want to listen to mommy, so bathtime was cut short.

Gracie had fun playing "get" with daddy and I think it wore her out. She fell asleep about 7:45 p.m. She is now tucked in and in sleepy land.

Lisa, Jeff, and Gracie