Sunday, May 31, 2009

Sunny Sunday

Gracie awoke at 4:00 a.m. this morning and couldn't get back to sleep. She wanted to, but I guess that 3 hour nap earlier in the day wasn't such a good idea. We rocked for awhile and snuggled for awhile and about 5:00 a.m. she finally fell back to sleep. She awoke again at 6:45 a.m. and was sad that mommy had to go take a shower. I asked her if daddy could come snuggle with her and she shook her head "no". I asked her three times and each time I got the same answer. We thought she was teasing because she would smile and snuggle in even closer to me. She wasn't kidding, as soon as I got out of bed and Jeff climbed in, she was not happy.

Gracie was a pretty good girl in church today. I did have to take her out at the end of the sermon for a bit as she started to fuss. She enjoyed the music. After church she took a nap and then ate a good lunch. We played for awhile and then while daddy mowed the lawn, Gracie and I headed to the flower store to buy mommy her Mother's Day hanging basket of flowers. This was to be done the day before Mother's Day with Gracie and I as a new tradition, but Gracie got sick. So we just postponed it for a few weekends. Gracie especially loves when I water the flowers and water comes out the bottom of the pot. She likes to sit on the grass and watch the water and if I didn't make her stay where she was, she would have been underneath to feel the water.

Grace took an hour nap this afternoon and then we went outside to play and get some fresh air. She's getting very good at walking on the grass and I think that her balance when she walks on the sidewalk is even more steady. She even did a little running while holding my hand tonight.

After supper Gracie and daddy had water wars in the bathtub. No one emerges from these water wars without being soaked. The bigger the splashes the bigger Gracie laughs and giggles. Her legs just kick and kick and kick. It is great fun to watch.

Tonight Gracie decided she wanted daddy to put her to sleep (this is usually mommy's job). Perhaps she was feeling guilty for not snuggling with him earlier!

All in all a good day. We read books again and had some good family time playing on the floor.

Have a great week.

Lisa, Jeff, and Gracie

Saturday, May 30, 2009

Saturday - Lots of Fresh Air

Gracie had a good night last night and even treated me to sleeping in until 6:40 a.m. this morning. She awoke in a good mood and we all had a leisurely breakfast together. I took Gracie out for a walk this morning and she loved the fresh air. After our walk/stroller ride we stayed outside and played. We took Gracie's car outside and let her drive that. She is great at backing up, but doesn't quite have going straight or frontward figured out yet. All in due time. Gracie's little legs were just a moving.

Gracie took a short nap this morning and didn't really want much for lunch. She did eat her pears and I had leftover Chinese food that appealed to her, so she helped me eat my rice and broccoli. Gracie signed "more" today. We've been working with her for sometime and today she wanted more rice and broccoli and signed "more". YAY!!!!!

It was just Gracie and I this afternoon as Jeff had to work. All that fresh air caught up to Gracie and she took a 3 hour nap this afternoon. It should have been my time to be productive, but instead, I slept part of that time with her. We had a couple of other successes today too. Gracie pointed with her index finger today. Gracie gave me a mylar balloon for mother's day that she quite loves. Today she accidentally released it from it's string and it sailed up to our vaulted ceiling. She kept pointing at it. She also selected a plastic toy bear that fits in her hand and sat on the floor with it in her hand, then she would purposefully drop it to the floor and then pick it up, put it in her palm, and drop it again. She did this continually for a couple of minutes. I just sat back and watched.

This evening after supper we took another walk/stroller ride and then played outside some more until bath time. Gracie was very snuggly tonight and she sat on my lap for about an hour as we read book after book. She is very selective about what books are to be read and when. We had to read "Raindrop Plop" three times in a row. She has a book about all the things Baby Elmo can do and at the end it asks "How Big is Elmo?" and then you read "So Big" and a big Elmo pops up. Tonight we got to the page before Elmo pops up and she put her hands high up in the air for "So Big". She knows her books.

Gracie was tired again tonight from all the fresh air and is sleeping soundly.

Lisa, Jeff, and Gracie

Friday, May 29, 2009

Busy Friday

Gracie had a better night, she was restless for a short time, but settled down fairly quickly. She awoke at 6:00 a.m. and was in a pretty good mood.

Jeff and I both dropped Gracie off at daycare together today as we took one vehicle in for an oil change. Gracie was sad when we left but I'm guessing her beloved toddler tunes quickly distracted her. Jeff picked her up at 12:30 p.m. and I met them at home as we had a meeting with the a representative from the county that works with developmentally disabled children. This meeting was to talk about options and programs available to us, should we want to pursue them. I was excited to hear about the many adaptive programs that are available (for a fairly hefty fee) for special needs children...adaptive swimming, t-ball, etc. Gracie is a little too young for most of them yet, but there are definitely some good opportunities out there for her when she is a bit older.

Gracie took a 2 hour nap this afternoon and I snuggled in for the last part of her nap with her. She awoke with lots of smiles and snuggles. After supper we went to the wedding of a friend's daughter. Gracie and daddy spent the whole wedding at the back of the church as Gracie decided sitting was not what she wanted to do with her evening. She was quite restless and tired so we didn't stay long at the reception.

When we got home Gracie wanted to go for a little walk outdoors, so we walked up and down the sidewalk for a bit. She was so tired by the time we were putting her pajamas on that she had a major meltdown. Tired and Gracie is not a good mood combination. Needless to say she fell asleep in record time.

She is sleeping peacefully in the cutest teal and white polka dot pajamas with a bunny on them. She is cute as a bunny in them. :)

We're looking forward to the weekend.

Lisa, Jeff, and Gracie

Thursday, May 28, 2009


Gracie had a better night, she did toss and turn for a short time and cry out once in her sleep, but then seemed to settle back into peacefulness. She awoke in a grumpy mood, but mellowed out after a bit.

Daddy dropped her off at daycare and I picked her up. She was outside and having a great time and had lots of laughs and smiles. She was a happy girl all the way home. By the time we got home and got supper made she was very hungry and was quite unhappy. Food helped, but that was her tone for a good part of the rest of the evening. She had times of happiness, but was so tired that she was quite grumpy. We turned on a DVD of a singer that she likes quite well and that soothed her.

Gracie had a hard time falling asleep. I think she was overtired. She is sleeping peacefully now. I'm hoping for sweet dreams.

Lisa, Jeff, and Gracie

Wednesday, May 27, 2009

Wednesday - Tantrums at OT

Gracie again had a rough night, she would toss and turn and cry out in her sleep. Just as it was time for me to roll out of bed, I got her to a calmer sleep state. She awoke a little before 6 a.m. and needed some snuggle time, so we rocked for about 15 minutes before we started getting ready for the day. It's amazing how taking that time for snuggling, can make or break her mood.

Gracie went back to daycare today and I'm told she had a good day. Jeff picked her up for her OT appointment at the clinic. It was wasted time and money today. She had one success and that was zipping her zipper on her sweatshirt. She did do a purposeful release too. Other than that she was uncooperative, wanted to go everywhere she wasn't supposed to go and when not allowed to do so would do a drop flop to the floor and cry or scream. Our OT tried mightily, Jeff and I tried mightily to engage her, but it was not to be done today. We finally cut our session short by 15 minutes as we knew it was going nowhere.

Gracie mellowed out a bit on the way home and was a good girl as I made dinner. She sat at my feet and listened to music and played with food packages. She ate a good dinner and then splish splashed in the tub.

She was so tired this evening and was asleep by 7:45 p.m. I don't think she has moved since she fell asleep.

Lisa, Jeff, and Gracie

Tuesday, May 26, 2009

Tuesday - A Day of Appointments

Gracie had a horribly restless night, she tossed and turned and screamed out in her sleep all night long. I think she was overtired and that is not a good thing for her. Poor little pumpkin woke up at 5:30 a.m. and was in a mood, and I'm not talking a good mood. At 6:00 a.m. I put her in the car and we dropped daddy off at work as his vehicle was in the shop for maintenance. The ride did her good and mellowed her out a bit, although she was still a little cranky if things didn't go quite her way.

We ate a little breakfast, took a bath (which she enjoyed), and then played a little before I put her down for a nap at 8:15 a.m. That was just what she needed. She slept for an hour and awoke a new girl. We worked on feeding ourself fruitloops with a spoon. That will need a little more practice, but we're on our way. At 10:00 a.m. Sandy, Gracie's physical therapist, came over to work with her. Gracie did great on the balance ball and Sandy worked on stretching out some tight muscles. Sandy was pleased with Gracie's progress.

After a quick lunch, we headed to the clinic for Gracie's follow-up appointment with her Physical Medicine and Rehabilitation doctor. Dr. D. was quite pleased with Gracie's overall progress. Her walking skills, her cognitive skills, and her progress with all of her motor skills. The orthotics (braces) for her feet are making a noticeable difference, so we will continue wearing those. Dr. D. did consider putting Gracie in leg splints at night as she never completely unbends her knees, but decided that we would wait 6 months and see how she is doing before we go that route. I personally am hoping that we don't have to go that route. Our areas to work on are the hip area, the hamstrings, and working her shoulders and back muscles (although shoulders is hard to do at her age).

We feel that Gracie is making so much great progress and things are really starting to click for her. We hope and pray that this continues.

Tonight was a lazy night for all three of us, we just hung out and played. Gracie just jabbered and jabbered and jabbered. She is now sleeping peacefully...hopefully that continues through the night.

Lisa, Jeff, and Gracie

Monday, May 25, 2009

Monday Fun Day!

Gracie had a great night last night and awoke at 6:00 a.m. and was all lovey dovey. I got lots of kisses and snuggles. Gracie and I hung out at home this morning while daddy went golfing with Grandpa. We played and read books and even went out for a stroller ride. Gracie was so tired, she fell asleep in the stroller, but awoke quickly when we returned home.

Gracie was full of energy and the desire to explore today. She was into everything she could get her hands on. Although we have to keep a very watchful eye on her, I love the fact that she is curious about everything. Even the neurology resident at the hospital commented on Gracie's need to roam and explore. She said a curious mind is a learning mind and we like to see that.

Gracie took a two hour nap and then we headed over to Grandma and Grandpa D's RV for a picnic. Aunt Kathy and cousins Calvin, Maria, and Josh were there too. Gracie was on the move and enjoyed walking around, watching the kids play basketball. She went on a walk with Grandma and had a busy and happy time. Gracie did fall on the concrete drive and skinned her leg.

By the time we got home she was exhausted from all that walking, playing, and fresh air. She is peacefully sleeping.

Tomorrow we have a follow-up appointment with her PM&R physician. This is to talk about progress with her foot braces, as well as plans for continued PT and OT at the clinic. I think Dr. D. will be impressed with Gracie's progress.

Lisa, Jeff, and Gracie

Sunday, May 24, 2009

Sunday - Outside Time

Gracie had a good night and slept in til 6:45 a.m. She was in a good mood for the most part and I think she enjoyed being back at home and wandering from room to room, playing with her toys, and playing with the doorknobs (her latest fascination). After church, Gracie and I took a walk/stroller ride and enjoyed the beautiful morning.

Gracie and daddy hung out together for most of the afternoon as I was not feeling well. So they spent time outside playing and practicing walking on the grass. Grace took an hour nap this afternoon, but was a bit cranky. I was still not feeling great and had no desire to cook, so we went to Culver's for supper and sat outside to eat. The fresh air did us all some good.

We hung out at home this evening and just layed around -- I think the exhaustion of our hospital stay caught up with all of us today.

Gracie is now asleep, but restless. I'm hoping she has a peaceful night.

Have a safe Memorial Day.

Lisa, Jeff, and Gracie

Saturday, May 23, 2009

Saturday - We're Home!!!

The all powerful mommy is back to blog. Gracie had a very hard time going to sleep last night as she had to sleep in a crib. Gracie has never liked to be confined and hasn't been in a crib for a while. She finally fell asleep at 10:30 p.m. Only to wake up again at 3:00 a.m. and try as I might, I couldn't get her to go back to sleep in the crib. So I took her and all of her wires and layed with her on the play matt on the floor. There we slept (she comfortably, me not so much) until 7:30 a.m. I was worried because I had not seen any of the full body jerks at nap time or during the night and we were told, that they usually keep you in the hospital until they capture some. The neurology resident said they usually try not to keep kids more than 3-5 days. Ahhhhhhhhhhhhhh - 24 hours was long enough, now they were talking days???

Well, as luck would have it, Gracie had 4 full body jerks while she was sleeping (and while I was sleeping). The epileptolist monitoring the video camera and EEG witnessed them and I'm happy to report that "none of these had any EEG correlate". In plain speak, it is not seizure activity!!!! We were so relieved -- prayers answered once again.

Gracie did not like having the EEG leads removed and cried and screamed the whole time. She still has a head full of glue that will take days, perhaps weeks to remove. I got as much out while shampooing as I possibly could, but there is so much more there that we'll have to deal with. Gracie was so happy to be free, that we let her go for a walk in the hall. While we were on the EEG monitor, I had to keep our room door shut as Gracie constantly wanted to walk in the hallway, but of course her wires didn't allow that. So she was thrilled to be set free.

I packed up while Gracie and daddy walked the halls. Soon afterward, Gracie's nurse came to get me and said "you have to come see this", there was Gracie in the hallway, standing over a Somali baby in a stroller, just enamored with her. It was so sweet.

We arrived home just before noon, had lunch, gave Gracie a bath and a nap, and then Jeff headed to band practice while Gracie and I headed to a friend's graduation party. Gracie was in heaven. She had spent enough time with me over the last 24 hours, so took this opportunity to hang out with honorary Auntie Brenda and make lots of new friends. Gracie also made friends with Chloe, a Yorkshire puppy.

After the party we stopped at Aunt Sheila and Uncle Chris' house as it was time for Gracie's meds. Gracie had a great time playing with cousins Kayla and Jason. They even let her play the piano -- a bit hit. Gracie had such a big day that she fell asleep in the car on the way home. I carried her in the house to bed, and she is still sleeping peacefully.

We are thrilled with the good news today -- it is such a relief. Thanks to all of you who have been praying for Gracie. The power of prayer truly amazes me.

Lisa, Jeff, and Gracie

Friday, May 22, 2009

EEG Friday

Hello! Tonite's edition is being written by the all-powerful, all-knowing dad (well, the semi-powerful, semi-knowing dad - at least).

Today was the day for Gracie's 24 hr EEG. As you have read, we've had a few twitches during the night & just want to have them checked.

Lisa took Grace to the hospital this morning, where she (so I am told, I was not there) was a pretty good girl. Until (da-da-dah (that would be the suspenseful music)), it was time to have the EEG electrodes attached. Gracie has not liked the electrode attachment in the past, would today be any different? Uh . . . that would be, NO! Two people had to hold Grace down while a third person attached the electrodes to her head.

I am not sure if we have mentioned this before, but when they attach them, they use something that smells like model airplane glue. They then use a shot of air to quickly dry them. After that, they us a syringe to insert some contact gel (to insure good signal flow) - which leaves the tell-tale EEG marks on someone's forehead for 3 - 4 weeks. (You can begin to imagine why she doesn't like this). After that, they wrap the girl in a headband to hold everything in place & finish it off with a long cloth tube that holds all of the wires in place. She ends up looking similar to the Borg queen (for you TNG-Trekkies out there).

After that whole ordeal - Grace did pretty well. I arrived about 6:00 p.m. and spent the evening with Grace and Lisa. Grace was just starting to fall asleep when I left. Hopefully she has a good night. But then again, hopefully she has a few twitches, so they can get a reading. I would hate for them to spend another day!

I will be heading back on Saturday morning to see how all goes.

Have a great night and a SAFE Memorial Day weekend.

All the best!
Jeff, Lisa, and Gracie

Thursday, May 21, 2009

Thursday - Feeling Good

Gracie had a horribly restless night, she rolled constantly. I was just reading about a sleep study they are starting on sleep behavior of individuals with Sotos Syndrome. They didn't say alot about it yet, but I'm wondering if this constant tossing and turning is possibly part of that. Hmmm. By the time she needed to get up, she was sleeping peacefully. Go figure. I awoke her by singing "You are my Sunshine" and then "Day-O - the Banana Boat Song". Both are favorites of hers and thankfully she awoke with a smile.

Gracie was a very happy girl this morning and was only too happy to give me lots of hugs and snuggles. When I dropped Gracie off at daycare, she held on for dear life. The result of having mommy's undivided attention for two days in a row. She went and sat by "Gramma Barb" and snuggled so I was able to leave without too much guilt. Jeff picked Gracie up from daycare and she greeted him with a huge smile.

Gracie was a happy girl for the first part of the night, but was so tired after supper that she had a number of meltdowns. I was reading that this was another trait of individuals with Sotos Syndrome - frequent meltdowns over small things. Personally, I think it is more about almost being two than it is about anything else. I guess time will tell.

Gracie fell asleep at 7:45 p.m., but is a bit restless again.

Tomorrow we will be admitted to the hospital in the Epilepsy Monitoring Unit for a 24 hour EEG for Gracie. All prayers are welcome that we get good news. Daddy will be on blog duty tomorrow night and since we will want his presence at the hospital it may be posted later than usual -- so don't worry if you don't see an update til late.

All our love,
Lisa, Jeff, and Gracie

Wednesday, May 20, 2009

Wednesday - Another Day with Mom

Gracie finally fell asleep last night at 11:10 p.m. She ran a low grade fever and was terribly restless, she just couldn't get comfortable. She rolled and tossed and turned. This morning when she woke up, it was evident that something was not right in her world. After a couple of diaper changes (I'll spare the details) it was clear that her stomach was not feeling well. I stayed home from work again today to take care of her.

I usually limit Gracie's TV watching to 30 - 60 minutes per day at most, but today with her not feeling well I allowed her to watch some PBS kids shows for an hour and a half this morning. She was in heaven. Gracie loves the TV.

As the day progressed, I could tell that Gracie was starting to feel better. Her stomach was still a little sensitive this afternoon and evening, but she ate pretty well. The key with all of this heat is to keep her well hydrated.

I did put her water table together this afternoon and let her play with it on the deck for awhile. She LOVED it!!!! She was soaked from head to toe when I finally made her come in the house. I did find out that I have to watch her like a hawk. With it being as windy as it was today, leaves and other small debris kept flying in her water table. At one point there was a small little piece of a twig. I remember thinking I need to pull that out. I looked away for a second to see Gracie moving her mouth a little weird. Sure enough, she had it stuffed inside her cheek and boy was she mad when I dug it out.

Tonight after supper I took her outside and we walked on the grass. Gracie is doing great with her balance as she walks over the uneven surface of the grass. Her biggest hindrance is her confidence level. She can do it, she just feels more secure if she has a hand to hold.

Gracie was in a very happy mood this evening and I was rewarded with lots of smiles. Tonight we read a number of books and as we read "Brown Bear, Brown Bear, What Do You See", I told her that the purple cat says "meow" and she very sweetly repeated me.

Gracie had a hard time falling asleep again tonight, but is sleeping soundly now. Sweet dreams.

Lisa, Jeff, and Gracie

Tuesday, May 19, 2009

Tuesday - Still Feverish

Gracie had a rough night, her fever spiked up past 102 degrees and nothing worked to get it down. So I held Gracie last night and did alot of walking and bouncing (her favorite comfort thing other than her thumb). Her fever finally went down to a low grade temp about 2:30 a.m. She still had a low grade fever this morning. With no other symptoms, I was concerned she might have a urinary tract infection, so I made an appointment with a nurse practitioner in pediatrics. She checked her out and too thought we may be dealing with a UTI. Unfortunately the only way to find out is to do a urine test, so Gracie had to be catheterized. She hated that and so did I. The quick dip showed no infection. Now they will grow it out. The nurse practitioner was wonderful and at the end of our appointment she told Gracie to drink lots of fluids and take a nap when she got home. Gracie looked at her and adamantly shook her head "no" -- she did not want to take a nap.

However, on the way home Gracie fell asleep in the car, I carried her in the house, took off her shoes and she snoozed for 2-1/2 hours. Her fever was gone by this point and she ate a good lunch. I took her outside for a short time, but it was too hot, so we spent the afternoon playing in the house. She took another 2 hour nap this afternoon and was in a very happy mood, so we went for a walk/stroller ride tonight and she did great. We even practiced walking on the grass, which is a little tricky with her balance and coordination issues, but she is doing really well. Her biggest obstacle is her confidence level. She would much rather have a hand to hold.

Tonight as I was getting Gracie ready for bed, her fever returned. She's having a hard time going to sleep. I layed, walked, and rocked with her for a while and now daddy is singing to her. I think it may be another long night ahead.

Love to all,
Lisa, Jeff, and Gracie

Monday, May 18, 2009

Monday - A Girl with a Fever

Gracie had a rough night and was extremely restless and cried out in her sleep a number of times. She awoke in a very sober mood and we worked to get any smiles out of her. She was also quite snuggly and wanted to be held. She also awoke with a bloody nose. Not sure why. At first I thought perhaps it was too dry, but I keep a humidifier going in her room all night.

Daddy dropped Gracie off at daycare and she had a good day. Daddy also picked Gracie up at daycare, but on the way home noticed she wasn't feeling very well. When he took her out of her car seat he realized she had a fever -- 102 degrees. Jeff gave Gracie some ibuprofen to help with the fever and she was asleep, but still burning up, when I came home. I layed with her for quite sometime and she was so restless, you could tell she just did not feel well. Her fever came down to just under 100 and she seemed to perk up enough to drink some Gatorade and have a little to eat. Poor thing.

I talked with Gracie's pediatric neurologist today about her ongoing seizure like activity, which has become more frequent as we've done our latest decrease of Vigabatrin. Rather than increase her Topamax anymore, she wants to monitor Gracie with another 24 hour EEG to see what kind of seizures we are dealing with and to see if it is the Infantile Spasms coming back. We don't think that is the case, but can't rule it out without the EEG. So on Friday morning we will be admitted into the hospital for 24 hours. I don't look forward to this at all, but I know it is the best thing so we know what we are dealing with. If you have any extra prayers, we could sure use them. Thank you!

Gracie is now sleeping and I'm going to follow shortly. I think it may be a long night ahead.

Lisa, Jeff, and Gracie

Sunday, May 17, 2009

Sunday, Fun Day!

Gracie had a pretty good night, but unfortunately we're still seeing seizure-like activity in her sleep. She was quite the snuggly little bug this morning in her sleep.

Gracie and I went to daddy's church today and watched daddy lead worship. I was a little nervous that Gracie would see Jeff on stage and want to go up there too. She did really good, especially during the music. She did try to escape a couple of times during the message. We finished out service at the back of the church when Gracie decided she had been good for long enough. She got a chocolate chip cookie after church and did an awesome job eating it. We've been working on her to take bites rather than stick the whole thing in her mouth and she did a great job.

After church, Gracie and I came home, ate lunch and then she took a nap. When she awoke daddy was home, so we all went for a field trip to the park. This park has a baby swing, so we put Gracie in that and she was in her glory. She would have stayed in that swing all day had we let her. Another couple with three kids came up to play. All of a sudden the mom said, "Oh, it's Gracie. Hi. How are you doing? She's gotten so big." Jeff and I were a bit speechless trying to figure out who this person was. I think she sensed this and reintroduced herself. She is a pediatric physician. Gracie has seen her ONCE, at least 3 or more months ago. What an incredible memory.

We also went down the slide a couple of times and when it was time to get back in the stroller, Gracie had a tantrum and threw herself to the ground while screaming. We needed to get her out of the sun though. Even though we had sunscreen on her, her Topamax makes her very sensitive to the sun. Her cheekies were a little flushed tonight. We did take her hat along, but she wasn't great about keeping it on. We need a new bigger bucket hat for her.

After playing outside Gracie took another nap for about 45 minutes then Grandma & Grandpa D (Jeff's parents) came over and brought us supper. Gracie warmed up to Grandma quite quickly and they played and rocked and sang.

Gracie also voluntarily did purposeful release a couple of times today. YAY!!!!

It was a fun day. Gracie is now sleeping, but was very restless in trying to fall asleep.

I hope you all had a good weekend.

Lisa, Jeff, and Gracie

Saturday, May 16, 2009

Saturday - Hanging with Mommy

Gracie had a good night, but it was a little too short. She awoke at 4:30 a.m. and then fell back to sleep but was restless. She awoke for the morning at 5:30 a.m. I must have forgot to tell her that today was Saturday and we could sleep in. She wasn't sweet snuggly like she usually is, she instead insisted upon pulling my hair. She knows she is not supposed to do this and when I tell her "no" she gets into this thing where she grabs it with both hands and hold on and pulls for dear life. Needless to say, this is not tolerated.

Jeff had to work today, so Gracie and I played and worked on skills. She even did a purposeful release on command, but only one. The way I see it, that is a start. We did alot of singing and dancing today too. Gracie was in a good mood and for the first time in a really long time didn't have a perpetual runny nose.

Today we decreased Gracie's Vigabatrin again. She is now only taking 1/2 pill once a day and this is the last week she will take it. Unfortunately, I'm seeing more jerking movements in her sleep. I think we may end up having to do another increase in her permanent epilepsy med --Topamax. I'll need to talk with Gracie's neurologist about this.

Gracie took a 30 minute nap this morning and Gracie and I took a 2 hour nap this afternoon. We both needed that. After nap I made apple cinnamon muffins and we were enjoying them for a mid afternoon snack. Gracie had milk with hers. I left her in her high chair while I ran downstairs to check the laundry. I came back upstairs to find my kitchen walls, my kitchen floor, and my Gracie covered in milk. She loves to shake her sippy cup even though she knows she gets it taken away if she does this. The cup was empty and she was proud of her deed. She was smiles from ear to ear.

Gracie was a little moody late afternoon and evening. I'm not sure what the cause was, perhaps being stuck in the house all day with just mommy. Hopefully it will be nice out tomorrow and we can get outdoors for some fresh air. She did enjoy her bath tonight - splish! splash!

Gracie went to bed about 8:30 - 8:45 p.m. and had a lot of twitching and some jerking. Hopefully the rest of her night will be restful.

Lisa, Jeff, and Gracie

Friday, May 15, 2009

Friday - Where's Gracie?

Gracie had a good night last night and awoke in a good mood this morning. She had a lot of great smiles and was quite happy to roam the house. At one point she was a little too quiet. I found her pulling clean bottle nipples off the top of the cupboard where they had been left to dry last evening. She had one in each hand and a big smile on her face as if she had found gold.

I dropped Gracie off at daycare and Barb tried to get Gracie to climb up on the couch for me, but true to form, Gracie can be very stubborn if she doesn't want to do something, and she didn't want to do that. When Jeff picked her up from daycare late this afternoon, he was told that Gracie has mastered getting up on the couch and is now working on how to get down without falling.

All of you who know Gracie well, know that her absolute favorite game is peek-a-boo! Many times in the car she'll take her blankie and put it over her head and just wait for us to discover that she is playing peek-a-boo and ask "Where's Gracie". She had done this on the way home from daycare with Jeff. So when I got home from work, I was holding Gracie and Jeff started to tell me how on the way home he thought he had left Gracie at daycare because she wasn't in the back of the van. He went on to say, but then she appeared from under her blankie. He was making a big production of this story and Gracie was just eating it up. She was laughing as if she knew exactly what he was saying. When he was all done with his story and our laughter, Gracie gave him a high five. I think I have two comedians in the house.

Gracie had a good evening. We played and worked on purposeful release. We were so close. We'll work on that again tomorrow. Gracie also went to get her picture book, she just loves to look at pictures of herself.

We are looking forward to some time tomorrow to work on all the things we started to work on at OT and PT. Saturdays are good days for me to really work on those things with her.

Have a great weekend.

Lisa, Jeff, and Gracie

Thursday, May 14, 2009

Thursday - A Happy Girl

Gracie had a good night, although a little more restless than she has been for a while. She did a lot of rolling over by me to snuggle. I didn't mind a bit. She awoke this morning around 5:30 a.m. while I was in the shower and when I walked out of the bathroom she was snitching part of daddy's bagel.

Gracie acted a little tired when I dropped her off at daycare. She had a good day and has mastered getting up on the couch by herself. Now she has to learn to get down safely. Gracie also got to go outside to play and enjoy the mild afternoon. Daddy picked Gracie up from daycare and all that fresh air must have made her tired as the two of them fell asleep on the couch when they got home. When I arrived home, she wouldn't give me the time of day. Gracie and daddy were eating tortilla chips with a hint of lime and she was into them. Once she finished eating it was like "Oh hi Mom, when did you get home?"

Gracie ate a pretty good supper and then it was bath time. She enjoyed splashing and refreshingly didn't fuss when it was time to get out and dry off. She was a very good girl tonight, but very tired. She fell asleep around 7:30 p.m. I'm hoping she has sweet dreams tonight.

Lisa, Jeff, and Gracie

Wednesday, May 13, 2009

Wednesday - A Day of Accomplishment

Gracie had an awesome night and I should have known it would be a great day when she woke up at 5:00 a.m. and was smiles from ear to ear. All was right with the world.

Usually when I drop Gracie off at daycare, she gets a little clingy and snuggly. Not today, she had a musical toy to play with and my attempt for a kiss was barely acknowledged. She was an independent girl! I was excited to get a video sent to my email at work mid-morning, it was a short clip of Gracie attempting to climb up on the couch at daycare...and then success!!!!! This was a first!!!! She has been trying, but up until today couldn't quite do it. Thanks so much Barb and Michelle for capturing it - so I could witness this first!!!! Jeff and I were so proud.

Jeff picked Gracie up at daycare and got to witness Gracie climbing up on the couch again. She is working on mastering that. Jeff brought Gracie to her OT appointment at the clinic and I met them there. Gracie had a new OT today and she was GREAT with Gracie. We worked on having her help take off her shirt, washing her own hands, turning the water on in the faucet, chewing (a stick of beef jerky), putting items in and out of a play refrigerator and climbing the steps. The reward for climbing the steps is that you get to go down a slide. Gracie got to go down on her tummy today. BIG HIT! Gracie really responded well to the Occupational Therapist today and had some big accomplishments as we worked through the items. Jeff and I sat back and grinned from ear to ear with pride. She really made progress today.

Gracie was in a great mood tonight and her and I worked on a few things at home too. I could tell she worked hard today as she really ate alot for supper. After she was done eating her own plate of potatoes, carrots, and ground beef, she started in on mine. She also had applesauce, mandarin oranges, part of a pop tart, some fruit loops, and some M&M's. I think she may be growing.

About 7:45 p.m. Gracie fell asleep and is sleeping soundly. It was a great day for so many exciting accomplishments and successes.

Lisa, Jeff, and Gracie

Tuesday, May 12, 2009

Tuesday - A Walk Outside

Gracie awoke this morning a little after 6:00 a.m. I was in the bathroom blow drying my hair, when the door was pushed open and there was our little cherub, sad because I didn't hear her and come to snuggle. So I picked her up and we went and rocked for awhile until smiles appeared.

I dropped Gracie off at daycare and she was in a great mood. Today she played peek-a-boo with her buddy Maddox through the play kitchen. She thought that was quite hilarious. When I arrived to pick her up, she was listening to music.

Gracie had physical therapy today and we worked on walking outdoors in the grass. This worried Gracie greatly and she was very unhappy. She could do it and even if you had a finger on her back for reassurance she did much better. We also worked on walking up the steps.

Gracie was so grumpy afterward that I put her down for 30 minute nap at 5:30 p.m. That seemed to help, but she was still one tired girl this evening. She did have a bath and as usual enjoyed bathtime, but she kept insisting on putting her face in the water and trying to drink the bath water, so her bath was cut short.

Gracie went to sleep a little after 8:00 p.m. and is now sleeping soundly.

Sweet dreams everyone.

Lisa, Jeff, and Gracie

Monday, May 11, 2009

Monday - A Visit from Grandma & Grandpa

Gracie had a restless night last night. I think it may have been that she was overtired. She awoke at 5:45 a.m. and was ready to start the day. Daddy took her to daycare and she was quite snuggly. She had a good day and was enjoying the outdoors when I arrived to pick her up.

Gracie was very tired and grumpy when she got home. In her grumpiness she threw her plate with supper on the floor, as I was bent over cleaning it up, she decided to add her sippy cup and the rest of the food that was on her tray..right onto the back of my head. Lovely. Thankfully I am a patient and loving mother.

Tonight Jeff's parents arrived in town for the summer and came over for a visit. Gracie was still in her tired funk when they arrived, and although still tired, she warmed up to Grandma and warily eyed Grandpa at first. Gracie played ball with Grandma and enjoyed looking at her pretty watch.

Gracie fell asleep about 8:30 p.m. and I don't think she has moved since. I think I will go join her.

Have a good week.

Lisa, Jeff, and Gracie

Sunday, May 10, 2009

Sunday - Mother's Day

Gracie had a good night last night and woke me just before 6:30 a.m., by sticking her finger in my sleeping eye. I guess she wanted to make sure I was really sleeping. She was in a great mood when we were snuggling, but as soon as we got out of bed, her mood wasn't quite as sweet. She had her moments throughout the morning.

Gracie took a 45 minute nap this morning and started getting grumpy about 11:30 a.m. She hadn't eaten much for breakfast and I didn't realize the time, so that was my queue she was getting hungry. I gave her a bite of pear before I put her in her high chair and was rewarded with a huge smile. Pears and mandarin oranges are Gracie's favorite fruits. She likes applesauce quite well too. Gracie ate a good lunch. Then she treated me to a really cute mother's day card that referenced the fact that she was really glad I wasn't a selfish doody-head. I think maybe daddy helped her pick that one out!!! It really was cute. She also got me a balloon and we are going to the floral store another day to pick out a big hanging basket of flowers.

After lunch we headed to my parents' house for the day. Gracie fell asleep 20 minutes before we arrived at Grandma & Grandpa's house and that was her afternoon nap. Despite not having a very long nap, she was in a great mood and enjoyed all of the attention she got from G&G, as well as aunts, uncles, and cousins. She is my social butterfly. Being around people does wonders for her mood.

On our way home Gracie fell asleep about 2.5 seconds into the ride and slept the whole way home. She awoke for a couple of minutes upon arrival home, but went right back to sleep. She was a tired girl. I hope we don't experience a night terror tonight. We tend to experience those if we get overtired. Perhaps we'll luck out.

Gracie's increase in Topamax is going well and we really aren't seeing the groggy foggy stage with this increase. Yay!

Have a good week!

Lisa, Jeff, and Gracie

Saturday, May 9, 2009

Saturday - A Day at Home

Gracie slept quite well last night. I awoke every hour to check on her and make sure her fever hadn't returned. I'm happy to say we have been fever free since last night. Gracie was very snuggly this morning and slept in until almost 7:30 a.m. -- that was my Mother's Day present!!!!

It was very evident that Gracie wasn't feeling the best today. She was either very happy or very unhappy and it didn't take much to go from one to the other. Her appetite wasn't great today. As always her fruit was eaten up, but the other stuff was nibbled on. However, when I brought out the M&M's, there was room in her tummy for those! Usually I can count on her to drink quite a bit when she doesn't have an appetite, but I really had to push liquids today too.

Gracie took a 45 minute morning nap and a 2+ hour afternoon nap. Having had a wakeful night, I snuggled in with her for part of her afternoon snooze. Gracie enjoyed her bath tonight too. Maybe it just felt good to be clean. We let her stay in her pajamas all day. That is a rare occurence at our house!

We increased Gracie's Topamax (epilepsy meds) today to what is hopefully her maximum dose for right now. We are keeping steady on the Vigabatrin (her I.S. med) for this week and will decrease it again next week. I'm hoping the increase in the Topamax helps with the absence seizures. We didn't have any today.

Gracie went to sleep about 8:30 p.m. and is a little restless. Hopefully she will be well rested for Sunday and I'm hoping the rest will be healing.

Wishing all of you Mother's, a very Happy Mother's Day tomorrow.

Lisa, Jeff, and Gracie

Friday, May 8, 2009

Friday - Another Trip to the E.R.

Gracie had another pretty good night, but when she awoke was still tired and didn't get her snuggle time, so it took her a minute to find her smile.

Gracie had smiles when I dropped her off at daycare and she blew me kisses when I left. Jeff picked Gracie up midafternoon and she was in a great mood. We had a late afternoon appointment in Developmental Pediatrics and the nurse practitioner that sees her was very pleased with her progress. She is around a 15 month level at many things, but her inability to do a purposeful release of objects hinders her from doing many age appropriate skills. Her need to put everything in her mouth hinders as well. All in all, a good appointment. We don't need to go back for six months.

Jeff took Gracie home and I headed to Target to pick up a few things. As I was leaving, I got a call from Jeff - he was on the way to the ER with Gracie. She spiked over a 104 degree temp, her breathing became extremely labored, she began having the chills, and then she went totally limp on him. I met Jeff and Gracie at the ER and she was very obviously not feeling well. They gave her oxygen to help her saturation levels for a very short time and took a chest x-ray. The x-ray showed a little fluid in the right lobe where she had pneumonia previously, although they don't think it is pneumonia. We need to watch her very closely, as sometimes x-rays are delayed in showing pneumonia. They gave her ibuprofen for the fever and checked her out pretty thoroughly. Once her fever came down, she started breathing much easier. They took a flu swab and we'll hear from the nurses on that hopefully tomorrow.

We are now home, Gracie is asleep and still has a fever, but it is only around 100 and she is breathing much more easily. I think I'll go snuggle in with her.

Prayers are welcome for our little girl to be healthy again.

All our love,
Lisa, Jeff, and Gracie

Thursday, May 7, 2009

Thursday - An Abundance of Smiles

Gracie had an extremely restful night. She slept so peacefully, which means that so did I. She awoke in the absolute best mood. Gracie had an abundance of smiles. She was so much fun, I just wanted to stay home all day and play. If it wasn't for that mortgage payment each month, I might have considered it.

Gracie had a good day at daycare. She was wearing a babydoll smock type top and when we arrived at daycare, Gracie's little buddy Kylie decided she needed to check out Gracie's tummy...and then her belly button. It was very cute. I'm not sure Gracie was all that pleased with it though. When I picked Gracie up from daycare, she was out taking a walk and enjoying the nice day.

Gracie ate a good supper and when she had eaten most of her meal, I took out the M&M's. An instant smile spread across her face and her eyes just lit up! She is definitely her mother's daughter...come to think of it, her dad is an M&M addict also.

After supper, we took Gracie out for a stroller ride. She had a great time and her arms and legs were moving the whole time. Well that is until she had another absence seizure on us. This was a pretty long one. We increase her Topamax again on Saturday, hopefully that will help with the absence seizures.

Gracie was so tired tonight. She fell asleep about 8:15 p.m. and hasn't move a muscle since.

Tomorrow Gracie has an appointment with Developmental and Behavioral Pediatrics. This is an appointment to follow up on her progress -- it was originally scheduled for January, but she ended up being hospitalized for pneumonia. So we are a little behind on this appointment, but we've been closely followed by her pediatrician and her neurologist, so I think we are fine.

Good night to all.

Lisa, Jeff, and Smiley Gracie

Wednesday, May 6, 2009

Wild and Wet Wednesday

Gracie had another restful night, and awoke bright and early at 5:30 a.m. She was in a good mood and was ready to dance to the music of a PBS kids show "Maya and Miguel" She isn't all that interested in the program, but loves the music.

I dropped Gracie off at daycare and she had a good day. When I arrived to pick her up she was playing peek-a-boo. When we were ready to leave she crawled up the stairs on her own. What a big girl.

Daddy was supposed to work late tonight so Gracie wouldn't have seen him til morning, but he surprised us and came home earlier. We owe a big thank you to his colleague Ruth who worked for him so he could spend time with his little girl.

It was bath night and true to form Gracie was a wild girl in the tub, kicking and splashing. I was soaked from all of her splashing. Gracie and daddy had water splash wars. She thinks this is great fun.

Shortly after bath, Gracie was ready to snuggle in. She is now asleep and hopefully it will be a good night ahead.

Lisa, Jeff, and Gracie

Tuesday, May 5, 2009

PT Tuesday

Gracie had a great, very restful night. She awoke in a good mood and was ready to start the day. She had lots of smiles for mom and dad. When I dropped her off at daycare she was full of hugs and snuggles.

Gracie had a good day at daycare and worked on her latest new skill - blowing kisses! I picked Gracie up mid-afternoon and we headed to the clinic for her physical therapy appointment. She was happy to see Leslie, took her hand in the lobby and together they walked to the PT room. Gracie was so ready for PT, she actually more like "ran" to the PT room. I just followed behind pushing the stroller and smiling at our independent little girl. Gracie worked on standing on her own, walking on a bumpy surface (although she used her problem solving skills and starting walking around the bumps rather than having to use her balance skills), she worked on running, and bouncing. Leslie was very happy with Gracie's progress. She felt she was walking straighter and seemed to have more strength.

On the way home from PT, Gracie fell asleep in the car. I took her out of her car seat and put her in bed without her waking up. About 6:30 p.m. she awoke and was not a happy girl. Eating supper helped a little, but she was a bit moody here and there throughout the night. She did have moments of contentment as she played on her own with her musical stacking rings and reading books.

At one point tonight, Jeff and I were on the floor with Gracie and she was doing her own thing. I said some smart comment and Jeff started going after my feet. I started screaming as my feet are pretty ticklish and pretty soon Gracie turns around, looks at me, starts screaming in happiness and rushes over to join her dad in the battle against mom. It cracks me up as usually kids see their parents horsing around and start crying. Not Grace, she wants in on the fun.

Gracie fell asleep about 9:00 p.m., but it is a restless sleep. Hopefully she'll have a good night's sleep.

Wishing you all a great Wednesday.

Lisa, Jeff, and Gracie

Monday, May 4, 2009

Meow Monday

Gracie had a pretty good night and awoke at 6:00 a.m. She ate a pretty good breakfast and then Emily, her early intervention teacher, came to work with her. Gracie demonstrated some of her new skills and even told her what a kitty says "Meow"! She absolutely HATED the koosh ball that Emily brought with her, but liked the one with bumps. Blowing bubbles was a huge hit too.

I took a very tired girl to daycare. When I arrived to pick her up this evening she was enjoying the mild temps outdoors. Gracie was quite grumpy until after supper, I guess I didn't realize how hungry she was. Gracie ate a very good supper.

Gracie has the reddest cheeks tonight and I'm not sure why. I know she is extra sensitive to the sun because of her seizure meds, perhaps too much sun on her cheeks. I'm just not sure, I guess I'll need to get her hat out and have her start wearing that outdoors again.

Gracie had a great time in the tub splashing tonight. Daddy decided to get into the action and started splashing her back by putting his hand in the tub and sending the water back her way. This turned into an all out splashing war. I'm not sure who won the battle, but I was the true winner, rewarded by all sorts of giggles and laughter.

Gracie fell asleep a little after 8 p.m. tonight, but she has been very restless. Perhaps she is too warm. Hmmmm.

Good night all.

Lisa, Jeff, and Gracie

Sunday, May 3, 2009

A Beautiful Sunday for Swinging

Gracie slept in until 7:00 a.m. this morning -- that was a great treat for all of us. Although she slept in, she wasn't in the greatest of moods. I think her cold was getting the best of her. We did take her to my church with us and she did very good. We even had a person come up to us and tell us how good she was in church. Sweet! That's not always the norm for her. Jeff did take her out for a little while when she had just sat for too long.

We came home and she was too tired to even eat lunch, so we put her down for a nap. While she slept, daddy stayed at home with her, while I went to my home away from home...Target. We were out of everything. By the time I got home, she was awake and had eaten lunch. She also had an absence seizure today at lunch time and I think she had one again at dinner time, but I'm not certain the dinner time was one.

Mid-afternoon Jeff had to go to work, so I took Gracie outside for awhile. It was about 67 degrees and sunny out. I sat her in the grass for a while and she just smiled. I think she loved the mild breeze. That went well until she started eating the grass. Then we went for a walk, until her legs got tired. After that, I took her for a stroller ride to the nearby school and let her swing. That was a huge hit. The higher we went the louder the giggles. It was then that I realized, just about everything Gracie does is more of an effort for her, but when she was on the swing - she was a normal little girl just loving life. That just made me feel good inside. We also went down the slide, but not as big of a hit--it's that balance issue again.

We came home and Gracie took a nap and was in the best mood when she woke up. I snuggled with her for a while and I pretended I was going to get her cheeks with kissies, she just giggled and giggled. Her giggle was so contagious that I began to laugh, which made her giggle all the louder.

Regulating Gracie's G.I. system is quite a balancing act. I think I made her diet too bland and binding, and now her problem with diarrhea may be just the opposite. Who knew it would be such a science.

Gracie was a tired little girl tonight and went to bed about 8:30 p.m. Sweet dreams.

Lisa, Jeff, and Gracie

Saturday, May 2, 2009

Saturday - Time with Family

Gracie awoke this morning at 6:00 a.m., so much for sleeping in! She snuggled with me for awhile and then went on a hunt for daddy and knew just where to find bed! Gracie was in great mood despite having a faucet for a nose today. Her cold is in full drainage mode.

We went to get Gracie's shoes checked for size and all is well there. Then we went with daddy to get his haircut and visit honorary Grandma Gina.

When we got home we had lunch and were excited to have visitors. Auntie Sheila and cousin Kayla stopped by to play and Gracie was only too happy to have visitors. After a nap, Aunt Arlene and Uncle Dave came over to play. Gracie was happy to play and snuggle.

Today we decreased the Vigabatrin yet again and started the increase of her Topamax. She seemed a little more tired than usual at times, but did pretty good despite that. Hopefully this will help with the increased jerking movements when she is sleeping.

All of the fun with family tired Gracie out. She was fast asleep before 8:00 p.m. tonight.

Lisa, Jeff, and Gracie

Friday, May 1, 2009

Friday - May Day

Gracie had a pretty good night, although she had some restless hours in the wee morning. She awoke at 5:45 a.m. and snuggled with daddy for a little bit upon waking. He sang to her and she got out of bed in a great mood.

I took Gracie to daycare and she had a good day of singing and dancing to music. Her G.I. issues seemed to be under control, although she is still on a bland diet. I did give her 4 ounces of soy formula tonight. I sure hope she tolerates it. Daddy picked Gracie up and they had a some good quality time before I got home.

Gracie has the start of a cold again. Poor little munchkin -- her little nose looks like Rudolph's. She wasn't too happy when mom showed up with the nose sucker either!

Today was May Day and Gracie got a May basket from the neighbors - thank you, it is adorable!

Gracie was very tired this evening and didn't even make it til 7:30 p.m. She is now sawing logs. I'm hoping that she might sleep in tomorrow morning...what do you think my chances of that are???

Have a good weekend.

Lisa, Jeff, and Gracie