Wednesday, March 31, 2010

Wednesday - Enjoying the Beautiful Day

Gracie awoke in a great mood and once again (much to her mother's extreme relief) took her seizure meds with no problems at all. She was a happy girl until she realized that daddy was not going in the car to daycare with us. That brought some tears, but thankfully they were shortlived.

Gracie had a good day at daycare and got to play outside and enjoy the beautiful 70+ degree day. I need to get her new summer shirts washed as last years are too small. Thankfully I had one washed up for today. Daddy picked her up at daycare and they came home and played outside for awhile. Gracie didn't want much for supper and when I got home from a major grocery shopping expedition, she was happy to see me, but seemed very tired and a bit irritable. I was ready to put her to bed, when she wanted something to eat. I gave her a cookie, which she ate right up, then she ate a banana, then she ate 3 mini muffins. She now had major energy and boy was she in a great mood. She wanted to eat the muffin in the living room, I told her she had to stay in the kitchen. I've never seen Gracie run so fast out of the kitchen and she was giggling the whole way. So that became a game and she was hilarious.

Gracie had a hard time falling asleep tonight, but she is now sleeping peacefully and it's time for me to join her.

Lisa, Jeff, and Gracie

Tuesday, March 30, 2010

Tuesday - A Day at the Park

Gracie had a bit of a restless night, but awoke in a good mood and once again took her seizure meds without any problems. After she was done eating a chocolate chip muffin and applesauce with her meds, she walked to the cupboard where our cookies are kept and said "cookie". I said "How about a cracker?" But that wouldn't do - it was a cookie she wanted. Since this was the first time she independently verbalized cookie, she was rewarded with one.

Gracie did good when I took her to daycare. She did do a short spurt of "boneless fussing girl", but it was short-lived. It was such a beautiful day that all the kids got to go to the park. Jeff picked her up there and stayed for awhile to let her swing and have a good time.

When I got home we ate a quick supper and then Jeff headed to a church meeting. Gracie and I hung out at home. She was very tired from all the fresh air, but she was so on top of things tonight. She understood pretty much everything I said. I always ask her things about her day and I don't usually get too much of a response from her. Sometimes I get a smile. Tonight I said "Gracie, did you get to go on the swings at the park?" She was laying down sucking her thumb and she stopped, sat up, smiled, and in a big voice said "A-huh." She loves to swing.

We snuggled and danced alot tonight. Gracie just wanted to be held and she had lots of hugs for me. She is now sleeping peacefully.

Lisa, Jeff, and Gracie

Monday, March 29, 2010


Gracie had a pretty good night and awoke in a good mood. She took her meds beautifully (thank you God...prayers answered) as she ate a chocolate chip muffin. She got down from the table when she was done, only to return a little bit later and steal that last remaining bite of my muffin from my plate. She was quite proud of herself for that little stealth move.

She was a happy girl on the way to daycare and other than the initial fuss, she did great even when I left. Jeff picked her up and she decided that she would go hang with Barb instead of give daddy a hug. When I got home she and daddy were watching Sesame Street song clips on You Tube, so I got a smile but not much else. Once that was done, she just wanted to be held and cuddled.

She ate a big supper and had a splashing good time in the tub, but was one tired girl. She had a hard time falling asleep but is snoozing peacefully now.

Lisa, Jeff, and Gracie

Sunday, March 28, 2010

Sunday - The Perfect Child

Gracie was the perfect child today. It was just Gracie and I today as daddy had to work all day. She awoke at 7:30 a.m. and was in a great mood all day. She took her morning and evening meds with no problems at all. She was happy, easily entertained and even did some playing on her own. I knew it would be a mistake to take her to church on my own for Palm Sunday, so we watched mass on TV. She sat on my lap quietly snuggling for the whole service.

Gracie took an almost 2 hour nap today and when she awoke we headed outside for a walk. The sun was beautiful, but the wind was quite cold. We were both glad we had our winter coats on. We even put Gracie's hood up over her headband, because she could feel the wind and it was making her cold. When we came in, I just let her play in our entry way. This is a huge treat for her. She loves to use my keys and pretend to lock and unlock the doors. She loves playing with the door handles.

Gracie was happy to see daddy when he made it home just in time for supper. Although she was so happy to see him, that she quickly ate her food and was ready to play and she wanted daddy to be done eating too. It was play time.

Gracie was absolutely hilarious tonight. She was chasing Jeff and I around the house and if we would stop, she would push us on the backside to indicate we needed to run away from her more. She was giggling and just having a great time. She was running so fast and hard that she was breathing so heavy. We then played a few lullabys to calm her down before bedtime, but to no avail. She was so wound up, it took me an hour to get her to fall asleep. She was just a little comedian in bed, chatting away.

Now she sleeps peacefully at the end of this fun weekend.

Lisa, Jeff, and Gracie

Saturday, March 27, 2010

Friday & Saturday

Sorry no blog on Friday - I fell asleep with Gracie when I was putting her to bed. It was an exhausting day that started out with her refusal to swallow her food again. The very food that contained her seizure meds. She was fine after that little battle was over and had a good day at daycare. Jeff picked her up late afternoon and headed to the clinic for Gracie's OT appointment. I met them there. She has such a great time there, she loves all of the clinical assistants, but has a major attachment to Rachel. Rachel always takes the time to take her for walks and they get chased by another clinical assistant, Jan. It is just a riot to watch and Gracie just giggles and giggles.

Gracie was pretty unmotivated during OT. She did everything asked of her, but was not interested for long. She seemed tired and we noticed that she has been drooling a lot more the last couple of days. I'm not quite sure what that means. When we got home she was in a very unhappy mood and we could not get her out of it. She once again took her meds in her mouth but would not swallow them. Come to find out she was over hungry and when she gets to that point she gets so upset that she doesn't even realize what the problem is. Once we finally got supper in her, she also took her meds. The rest of the night she was in a great mood. It was like someone turned a switch.

Today, Saturday, was a great day, other than the fact that she had another of her nasty bloody noses and awoke with blood everywhere. Once we got her cleaned up, all was well. She was agreeable, happy, and so full of words and understanding. She awoke at 7:00 a.m. and we had a lazy morning. We all sat down to cinnamon rolls for breakfast and Gracie took her meds with no problem at all. She had a ton of fun in the bathtub and after lunch and nap, Aunt Sheila came over. Gracie was full of snuggles for her and had a great time playing with her.

Gracie seemed very tired this afternoon and evening, but was in a very good mood and was playful and happy. She was so fun to be around. She fell asleep very quickly tonight. I think we wore her out.

Lisa, Jeff, and Gracie

Thursday, March 25, 2010

Busy Thursday

Gracie slept well last night as long as her head was laying on me. She was pulling at her ear a lot so I'm not sure if it felt better when elevated or what the reason was. She slept with her head either on my stomach or on my shoulder the whole night. She awoke in a good mood and I thought the battle of the meds was going to start again, but she surprised me and took them relatively easily.

Gracie had a good day at daycare and got to play outside. Her little cheeks were rosy tonight from all the fresh air. Daddy picked her up and zoomed home where I met up with them. Gracie's physical therapist and early intervention teacher came over to work with her. Her PT brought a trampoline along that we get to keep for a week. Gracie was hesitant at first, but then jumped on it and we even saw lift off from her feet twice. She was so chatty and verbal, they both commented on how much improvement she is making with her speech.

After supper Aunt Arlene and Uncle Dave stopped by for a short visit. Gracie was happy to see them and look at the pictures of their two new granddaughters. Then it was bath time and then straight to bed. She fell asleep so quickly. She was a busy girl today.

Lisa, Jeff, and Gracie

Wednesday, March 24, 2010

Wednesday - The Battle of the Morning Meds

Gracie had a good night and woke up in a good mood, but the battle of the morning meds continued. It was daddy who was late for work today trying to get them in her. Oh why won't she cooperate? The evening meds are absolutely no problem. She takes them like a charm.

Gracie had a good day at daycare and daddy picked her up and read a few books before I got home. Gracie was very tired tonight, so things bothered her a little bit here and there, but for the most part was a very good girl if we were giving her lots of attention and cuddle time. Gracie and I snuggled and read books a good part of the evening. She fell asleep quite quickly, but I notice her pulling on her ears when I check on her. I wish her tubes would just fall out.

Gracie was very talkative tonight and was very interactive as we read books. We had the tv on for a short while tonight and there was a bird on the screen, Gracie signed bird. I was also reading a story about mommy hugs and she leaned over and gave me a great big hug. Then it talked about smiles and she looked at me and we both made big smiles. It was so sweet.

Lisa, Jeff, and Gracie

Tuesday, March 23, 2010

Tuesday - Happy Girl

Gracie had a good night, although she woke up at 4:30 a.m. (just 30 minutes before I have to get up for the day) and kept telling me "hi" over and over again. Very sweetly I might add. She did fall back to sleep again until 6:00 a.m. Gracie would not swallow anything again this morning. So getting her meds in her was a huge challenge. I'm convinced it isn't about the meds at all, that it is about eating in the morning. This is becoming very stressful, as she must have her seizure meds.

Gracie was extremely moody when I took her to daycare, fussing when we walked in. She played boneless girl and flopped to the ground. She snapped out of it fairly quickly though. She got to play outside again today and enjoyed that. Daddy picked her up at daycare and the two of them played and ate supper together and she was a very good girl. I came home a little later and she was just a joy to be around all night. She was so happy and agreeable. Transitions went so smoothly and we had no fussing or tantrums about anything.

Gracie and daddy had major splash wars while she took a bath tonight, that was worth lots of giggles. We have a permanent stain on our bathtub that has been there since we moved in. Tonight Gracie took her finger, touched it and said "dirty". That's my girl!!! She also walked into her bedroom tonight where Jeff and I were sitting on her bed talking and she said "Hi Jeff". That about cracked me up.

Gracie serenaded us by playing her piano tonight and then she insisted that Jeff and I play it with her. She fell right to sleep tonight and seems to be very peaceful.

Lisa, Jeff, and Gracie

Monday, March 22, 2010

Monday - Lots of Time Outside

Gracie had a good night with the exception of being up from 1:00 - 2:30 a.m. She awoke when I got up to go to the bathroom and then she couldn't fall back to sleep. She did wake up in a great mood and had some really good smiles for me. Then it was time for breakfast and meds. She would let them go in her mouth, but she wouldn't swallow anything. For 30 minutes she walked around the house with applesauce, toaster streudel, meds, and water crammed in her mouth. She finally spit most of it out down her shirt and we got the rest out by having her brush her teeth. Then it took me another hour to get her to take her meds. Needless to say I was late to work again. She has been taking them so good again, so I'm not sure what the problem is. Taking them at night is never a problem, so I don't think it is a flavor thing. We did use peach applesauce today, which was what she had a problem with last maybe she doesn't like that used to be her favorite. Or maybe she is just being two. Or maybe it's sensory thing and she likes feeling the food swish in her mouth. Who knows?

Gracie had a good day at daycare and got to spend alot of time outside in the fresh air. It was a beautiful day to be out. All that fresh air made Gracie one tired girl.

We didn't allow her to have any yogurt today. I made a strawberry banana smoothie with almond milk for her meds this evening and she ate that quite well. She was in a very good mood tonight despite being tired. Less clingy, happy, and playful. I really do think the yogurt was making her not feel good, thus making her so moody and wanting to be held constantly. She wanted yogurt so bad tonight. I let her hold onto the container, but she didn't get to eat any. If only the soy yogurt tasted better.

Gracie ate a good supper tonight and was a very good girl. Tonight when she was falling asleep, I was laying beside her and she kept whispering "hi" to me over and over again. I said "hi" back and then told her that she needed to go to sleep. She whispered "hi" again, then put her index finger over her lips and said "shhhh". That cracked me up..she told herself to be quiet.

Good night all.

Lisa, Jeff, and Gracie

Sunday, March 21, 2010

Sunday - More Fun on the Swings

Gracie slept in til just about 8:00 a.m. this morning. Pure bliss. She awoke in a good mood, but still was very clingy today, had alot of outbursts when things wouldn't go her way, and wanted to be held alot. She also had alot of beautiful smiles, snuggles, and kisses.

We sent daddy to church by himself today as we weren't sure what Gracie's mood would bring, and Gracie and I watched mass on TV. Gracie was a good girl this morning, but wanted to be held alot. Jeff and I are starting to think that allowing yogurt back in her diet may be the cause of this. Gracie doesn't tolerate milk products, but has a great love of yogurt. We had cut it out of her diet for a while and this last week added it back in to see how she did. We're thinking that her tummy isn't feeling quite right, thus the wanting to be held. Much to her unhappiness, we didn't allow her to have any today. She begs for yogurt. I did make a soy smoothie with soy milk and frozen strawberries to substitute and she liked that too, but it's not her loved yogurt. Oh and yes, we've tried soy yogurt, she is not a fan of that.

Gracie took an hour nap today and then we headed outside for the afternoon. First we walked around our big extended block. Gracie is getting quite brave and decided she didn't want to hold mom or dad's hands and sometimes she would decide that she wanted to go the opposite way we were going and sometimes she would decide that she needed to go investigate the garage doors or cars of people we didn't know. She was in the exploring mood.

When we got back home we played outside for awhile then we put her in her wheelchair and went to the elementary school nearby and let her play on the swings and slides again. She had a great time and is getting braver and braver. She was very mad when it was time to come in the house.

Gracie had a pretty good evening, although she still wanted to be held alot.

Lisa, Jeff, and Gracie

Saturday, March 20, 2010

Saturday - Mommy's Girl

Gracie woke up this morning at 6:45 a.m. and pointed to the window shade. That is her indication that she wants the shade pulled up. She was ready for it to be morning. Our exciting news of the day was that Gracie woke up to find out she has a new baby cousin -- yes, two in one week. My niece Brittany and her husband Jeff are the proud parents of Maci Ann. Congratulations you two! Gracie loved looking at pictures of Maci and even said her name when I told her who she was. Gracie is very into babies lately.

Gracie was mommy's girl today big time. She wanted to be held by me a good majority of the day and I could not be out of her sight. Heaven help me if I had to go to the bathroom. I had a little tag along there too.

Something was not quite right in Gracie's world today and we are not quite sure what. I suspect she may be coming down with a cold as she was sneezing a bit today and had a little bit of a runny nose, but nothing bad. She just needed a little more holding and hugging today. She also took a 3 hour nap.

After nap we had a little snack and then we bundled Gracie up and went outside to enjoy the sunshine. We took a walk with Gracie in her wheelchair and she was very happy out in the fresh air. Then we stopped at the school not far from our house and let Gracie swing and slide. They do not have any adaptive swings, so we put Gracie on a big girl swing and she did great and loved every minute of it. She did give mommy heart failure when she all of a sudden let go and was headed for a fall. I was right there, but not quick enough. Thank heavens daddy has long arms and was in the right place at the right time.

Gracie was not daddy's biggest fan today. Although they had some fun moments, she spent a good part of the day grumping at him. He just couldn't seem to do anything quite right. Poor daddy.

Tonight before bed, Gracie got a second wind and had a great time chasing mommy all over the house. Her little heart was just pumping from running so fast and hard. Oh and the giggles were music to my ears.

Here's hoping Gracie has a better day tomorrow.

Lisa, Jeff, and Gracie

Friday, March 19, 2010


I had to wake Gracie up this morning, she just wasn't ready to get out of bed. She was in a good mood and wanted to read books in bed. That would be great for a Saturday morning, but it is Friday with places to be, so I read two books and then convinced her that it was a good idea to get dressed.

When I dropped her off at daycare she was not a happy camper. Jeff drops her off and it is no problem. When I drop her off, I get the tears and sad face. Is it because I am more nurturing or is it because she is totally playing me. Yeah, just as I thought, she 's playing me.

Gracie had a good day at daycare and was totally into playing Wii when Jeff arrived to pick her up. They came home and played a bit, but when it was supper time, she didn't want to eat. When I got home a while later (as I had a couple of stops to make after work), we sat down and ate a little.

Gracie was in a goofy mood all night long and just cracked us up. She was singing and jabbering all night long. She has this sentence that she jabbers alot lately, but we can't make out any words. We would LOVE to know what she is saying.

She was a tired girl tonight and is now sleeping. Daddy reminded her that it is Saturday tomorrow so she could sleep in. We'll see if she remembers in the morning.

Lisa, Jeff, and Gracie

Thursday, March 18, 2010


Gracie had a good night until about 1:30 a.m., she kept pulling at her ear in her sleep and tossing and turning. She didn't fully wake up at this point, but was so restless and just kept pulling and pulling on her ear. I finally couldn't take it anymore and I woke her up to give her some Motrin. After that she had a hard time falling back to sleep and when she did she had to be half sitting up and then laying on me. Needless to say I didn't get much sleep after that. When she awoke she seemed to have no ear issues.
Uh oh, tonite's blog has been taken over by me - Jeff, the dad. I just came from downstairs, to find an open computer with a half written blog. I can only surmise that Grace woke up & Lisa went to soothe her. I then assume (being that it is now 10:20 pm) that Lisa has fallen asleep as well - never to arise until the sun shows it's shining face again.

So, I will end with this. Grace had a good day at day-care. They played outside & had alot of fun. She came home - wasn't terribly hungry. We played "chase" and she screamed like a little girl (which she is). Her new game is to ride on Lisa's back and then "sneak" up on me while I'm not looking and then tickle me. I, of course, make this whole production of being scared (I know, a shocker, because I never over react or make a big scene). Grace finds this to be great fun.

Grace went to bed at about the usual time & everyone other than me seems to be sleeping. Guess where I'm going!!

Bye for now, have a great day.

Lisa (she gets top billing, since she started this one), Jeff, and Gracie

Wednesday, March 17, 2010


Gracie got to sleep in a bit this morning and when she woke up I told her she had a new baby cousin (Congratulations Brad & Tracy - my nephew & niece-in-law are the proud parents of Kenzie Nicole), she gave me a huge smile. Gracie's early education teacher and OT from Birth-to-Three came to hang out with her this morning. We finalized her IFP and went over goals for her from now til she turns 3. She was very entertaining and enjoyed her friends coming to visit.

Then it was off to daycare, where she fussed a bit, but quickly warmed up. Jeff picked her up and they played outside for awhile til I came home. She was in such a good mood tonight. Jeff left to perform magic at Hope Lodge and Gracie and I just hung out at home. She was very cooperative and followed directions so well.

Gracie decided that she was going to continually drink the bath water tonight, so bath time ended much more quickly than usual. Gracie had a hard time falling asleep tonight, even though I could tell she was really tired. Even after falling asleep she tossed and turned for awhile.

Lisa, Jeff, and Gracie

Tuesday, March 16, 2010


Gracie had a pretty good night and awoke at 5:45 a.m. She was up with daddy when I got out of the shower, but when she saw me I got a big smile and some snuggle time while we rocked in the rocking chair. When I dressed Gracie for the day I discovered something...she's outgrowing her pants. At this rate, they will be capris by the time summer hits.

As I left daycare this morning, Gracie had these big silent tears. She certainly knows how to tug at her mommy's heart. She had a good day at daycare today and her and buddy Maddox were wild children again today. There is video of them running, chasing, and screaming. I haven't seen it yet, but Jeff did and said he had no clue that Gracie had such a high pitch scream.

When I got home tonight Gracie was super tired. Didn't want supper and could barely keep her eyes open. A little later I got her to drink some milk and eat a waffle and she perked up a bit. It took her about 2.5 seconds to fall asleep tonight. I'm not sure it will take me even that long. Daylight Savings Time is wreaking havoc with our internal body clocks.

Have a good night.

Lisa, Jeff, and Gracie

Monday, March 15, 2010

Monday - Enjoying the Beautiful Day

Gracie wasn't quite sure she liked getting up so early this morning, this daylight savings time is an adjustment for all of us. Once awake, she was in a good mood.

Gracie had a good day at daycare and spent alot of time outside enjoying the beautiful day. All that fresh air sure tired her out. She wasn't very hungry tonight, I think she was just too tired to eat. She did enjoy her bath, especially when daddy came home in the middle of it (he was working the late shift tonight).

We read some books and then it was sleepy time. Usually I put Gracie to bed but tonight she was snuggly with daddy, so he did.

Sweet dreams.

Lisa, Jeff, and Gracie

Sunday, March 14, 2010

Sunday - Deep Belly Laughs

Gracie had a good night and woke up in a good mood. She was very cooperative in taking her meds right down. It didn't hurt that she got to have Toaster Streudel for breakfast, one of her most favorite things. We ate quickly, got her dressed, and all headed to Jeff's church for the early service. Gracie did so good with the exception of during the sermon. Jeff took her out for most of that. She just loves the music and she did a lot of dancing. After service she took many sweet people for walks. They are so good to her!

From church we headed home, had some lunch, and then headed outside to enjoy the beautiful day. We took a nice walk outside and we all were enjoying the 50 degree day. Some disrespectful dog took a major poop on the sidewalk just in front of our house. Gracie now knows the word "poop" and knows exactly what it is.

Then it was nap time and Gracie took an hour and a half nap. After a quick snack, we headed out to the shoe store where we got Gracie some sandals for summer and some cute little white dress shoes for Easter and other dressy occasions. Then we headed to Target for a quick errand. On the way there, Jeff was sitting in the backseat with Gracie while I drove. He was reading her a book and using all these very exaggerated voices. She was laughing so hard, it was these very deep belly laughs. Just listening to her made me laugh too.

Since Gracie's med increase, she once again seems like she is more aware and her cognitive skills are sharpened. I had given her something and Jeff told her to say thank you to mommy. Gracie signed "thank you", then following said "momma". It was so sweet.

Gracie had such a good weekend and it was so much fun to play and hang out with her. She loved having mommy and daddy's undivided attention. We were only to happy to give it.

Lisa, Jeff, and Gracie

Saturday, March 13, 2010

Saturday - Time with Mom & Dad

Gracie did listen to me last night and slept in until 7:00 a.m. That felt like a little piece of heaven down here on earth. She awoke in a good mood and we just snuggled and "talked" in bed for awhile. When it was time to take our meds, we decided it would be great fun again to hold them in our mouth and not swallow them. It took us a good hour to get them all down and I'm not sure they all made it. I don't think it is a problem with the meds, I'm beginning to think she just thinks it's cool that she can do this. Mommy does not think it is cool. The evening meds are no problem at all, she eats them right down. I think it might have something to do with the fact that she is two.

We wanted to accomplish some errands this morning, but by the time we got all showered and bathed, Gracie was in a very "needy" mood. So we sent daddy out on some errands and Gracie and I stayed home for some snuggle time. We read some books and I just held her for awhile. She ate a pretty good lunch and really tried hard to use her fork and spoon with help. After lunch she fell off a kitchen chair and the chair came tumbling on top of her. That one caused some tears. I'm not sure if it hurt or it just scared her. Perhaps a little of both.

After lunch Gracie took a two hour nap and then we headed to the mall. She decided she really didn't want to ride in her wheelchair for long, she wanted to be held. Then she decided walking would be fun. She had a hey day in Barnes and Noble. Books are one of her most favorite things. I told her that daddy would buy her one. It was so hard to decide which one. She finally settled on a Mickey Mouse Playhouse book. Mommy snuck in a favorite of hers too..."Green Eggs and Ham". Then Jeff came across this really awesome book called "It's Okay to be Different". This was a perfect book with a great message.

Gracie was in a great mood all night long. She serenaded us with piano music and was a good girl. It took her a little while to fall asleep. She just couldn't settle down as hard as she tried. She is now sleeping, but is still restless.

Don't forget to set your clocks ahead 1 hour tonight....with the exception of honorary uncle Arlan, you can keep yours at the same time! :)

Lisa, Jeff, and Gracie

Friday, March 12, 2010

Friday - Increase in Seizure Meds

Gracie was super sleepy this morning and was a major daddy's girl. We've been giving Gracie her morning seizure meds in soy ice cream since the episode where she won't eat them in applesauce anymore. This morning I had it all ready and Jeff said, "Hey Gracie, do you want some ice cream?" Without missing a beat and in a very loud confident voice she said "No!" I left the room and Jeff offered her the ice cream with meds and she ate it right up.

She was so upset when I put her in the car to go to daycare because she wanted daddy. The last week of him working and her not seeing him has taken it's toll. When I took her to daycare she was very sleepy and clingy. When I left, instead of fussing and crying, I looked at her and she had big quiet crocodile tears running down her cheeks and she was doing the silent sad cry. It about broke my heart. Once I got to work I called to check on her and was relieved to hear that she was doing great. She had a great day. She and her buddy Maddox were running around chasing each other and using their outdoor voices.

I talked with Gracie's neurologist today and got the results of her EEG. Gracie is having epileptiform discharges in her sleep. This means she isn't actually having seizures, but more than likely would be soon if left untreated. So the plan is to increase her meds in the evening. I'm anxious to see what new developments she'll make as she always makes some good strides after a Topamax increase.

Daddy has been working with Gracie to take off her coat by herself when they come home from daycare. She's making some good progress. Gracie also has a new word...drum roll's...."chocolate"! Little mini Kit Kat bars are chocolate and she really really likes them.

Gracie was such a good girl tonight, it was fun to play with her and just hang out at home and have a good time.

I did inform Gracie tonight that tomorrow was Saturday and she could sleep in. We'll see if she listened! :)

Lisa, Jeff, and Gracie

Thursday, March 11, 2010

Thursday - Big Brave Girl

Today Gracie had her EEG. These are extremely traumatic for her, she gets very scared and knows what is coming immediately as we enter the room to get her all hooked up. I told her what we were going to do before we headed to the clinic. She does so much better if she knows what to expect for the day. When I was talking to her about it, she gave me that "please no" face.

We needed to bring her to the appointment tired and we succeeded. She was kind of grumpy in the lobby while we waited, but it had more to do with being tired than anything else. Once we started walking in the lobby she perked up.

The EEG technician was absolutely wonderful. Honestly, I believe all of your prayers worked that we got Karen as our tech. Karen talked to Gracie, was extremely patient with her, showed her what she was going to do. When Gracie got too upset, she would stop and give her a minute. She also had talked to a colleague who told her how Gracie doesn't do well with the pressurized glue gun to stick on the leads, so she used a cap full of leads instead that didn't need nearly as much glue and NO glue gun. There was a short time that it took two of us to hold Gracie, but it was very short-lived. I was expecting the worst and was so relieved to say this was probably the easiest EEG experience we've had, and to date this is her 12th EEG. Thanks again for the prayers! We don't have the results of the EEG yet. Our neurologist will be calling us with those. I'm hoping for good news as we've not seen any seizure activity since her absence seizure in January.

When we got home, Gracie and I both took a nap. Gracie slept for almost three hours and I for two hours. Daddy came home from work mid afternoon and he took a nap too. After nap we were eating a snack and Gracie and I were talking. I told her how proud I was of her and how she was such a "big brave girl today". I wish you could have seen her face beam.

With all the rain and warm temps the snow on our deck is melting away. Underneath this snow is Gracie's water table. Well today it appeared from beneath the snow. It was so funny to see her face when she noticed it all on her own. She got a huge smile and ran to the deck door. She tried and tried to open the door, then she signed "play". She wanted to play with it.

While supper was in the oven, Jeff, Gracie, and I took a walk around the block. The fresh air was good for all of us. Otherwise we had a quiet evening at home, just enjoying each others company.

Lisa, Jeff, and Gracie

Wednesday, March 10, 2010

Wednesday - Stubborn

Gracie had to be woken up this morning and she was none too happy about it. She finally mellowed out and it was time for her seizure meds. Her meds are capsules (4) full of little tiny sprinkles. I open up the capsules and put them in applesauce. She has always been very cooperative about taking them. We make it fun..."Gracie sure is a lucky girl, she gets sprinkles with her applesauce." Today I gave her the first spoonful and she would open her mouth and take it in, but she wouldn't swallow. I would give her water and a waffle to go along with it. All things would go in her mouth but she would not swallow them. Then she would open her mouth and let it all drain out. We had numerous go arounds with this to the point that I had to call in late for work. I tried EVERYTHING!!!! I'm usually a very patient person, but I was losing patience. I would stop trying for awhile, let her play, then try it again and we would go through the same thing all over again. Finally she wanted to just be held, so I scooped her up, she snuggled in, and we just walked for awhile. We walked past the kitchen cupboard where there were chocolate chip cookies. She wanted one. I let her have one and she chewed and swallowed it. Relief, it wasn't that she was having problems swallowing. At this point I got out the vanilla ice cream. Gracie loves ice cream but doesn't get it very often because dairy causes tummy issues. I took out just enough to get the sprinkles in and down they went.

Gracie had a good day at daycare. She was super snuggly with Barb today and when I went to pick her up, she didn't want to go home. I told her I was going to leave without her and she just smiled and waved "bye bye" to me.

Gracie was a little comedian all night long. She had Jeff and I in stitches most of the night. We kept her up later tonight as we need her nice and tired tomorrow for her EEG. Wish us luck and any extra prayers you have, we would appreciate.

Lisa, Jeff, and Gracie

Tuesday, March 9, 2010

Tuesday - A Happy Girl

Gracie had a pretty good night and I had to wake her this morning. She really didn't want to get out of bed. Once I convinced her to get up, get dressed, and have a little breakfast, she was in a very good mood. On the way to daycare she seemed very tired and she sat in her car seat looking a little zoned out. When we arrived at daycare she was snuggly and tired. When I left she was sucking her thumb, snuggling with her blankie and Michelle.

When I arrived to pick Gracie up I was thrilled to hear she was in quite the good and silly mood today. That continued into tonight. She was a little grumpy when we first got home, but I think she was just hungry. Before I got her coat off, she marched over to the cupboard where we keep the bread and wanted a slice. That is her favorite food these days, when she is hungry she always wants a slice of wheat bread. Nothing on it, just bread. She ate a good supper and then it was bath time. We worked on trying to get more of the EEG glue out of her hair and off of her scalp. We had some success, but there is still alot there. I'm trying to figure out if it is better to get it off or to just leave it and be faced with more of it with her EEG on Thursday.

We put on an old CD of mine tonight that Gracie hadn't heard before. I think it is her new favorite CD --it is the soundtrack from "How to Lose a Guy in 10 Days". She loved it and danced and danced. Then on the slow songs, she hopped up into my arms and we danced together. So precious.

She was a tired girl tonight. She fell asleep in about a minute. Unfortunately she didn't get to see daddy today. He left for work before she woke up and isn't home yet. He's had a long week at work and Gracie really misses him. She's been a very good girl though.

Lisa, Jeff, and Gracie

Monday, March 8, 2010

Sleep Clinic

Gracie and I checked in the Sleep Clinic last night. The accommodations were very nice. Gracie was absolutely thrilled with the large screen tv that was only inches from our bed. Snuggling in bed with mommy while watching the "Curious George" movie is the coolest.

Neither of us were prepared for the full blown EEG leads needing to be attached to her head. I knew there would be some, but for some reason I only thought it would be 4...wrong! The second we walked in the prep room, she knew what was going on and started to run away, when I took her hand to take her in the room she pulled away as hard as she could and fussed. It only went from bad to worse. Gracie is a very strong child and it took three of us to hold her down while another tech put the leads on. I felt so bad, she cried and screamed the whole time. She literally wore herself out.

The night wasn't so bad. Gracie slept pretty well with the exception of when the techs would need to come in to fill in more gel in the EEG leads and when she would wake up and be intrigued by the red light that was taped to her finger.

We were awoken at 6:00 a.m. by the tech ready to take off the leads. This is also traumatic. We did get to watch "Curious George" again when this was going on. After all the leads were off Gracie was in a much better mood and enjoyed eating breakfast in bed while watching TV.

Then it was back home to take a bath and Gracie took a nap before we had to head back to the clinic for the test results. We got some good news and some not so good news. Gracie does not have sleep apnea...YAY!!! I had no clue how we would get her to sleep with a CPAP machine. Gracie has leg movements far too frequent than the normal person...most people have 5 an hour. Gracie has 22 an hour, which many times wakes her up. This may be due to an iron deficiency, so we had a blood test today to check that out. The other not so great news is that the EEG showed wave and spike activity, which can be indicative of seizure activity, although no seizures were witnessed. We were referred to our neurologist who has ordered a full blown EEG on Thursday.

We also had lunch with daddy in the patient cafeteria and that was a big treat as he has been working really long hours and Gracie hasn't seen much of him. When we were all done at the clinic, Gracie and I ran out to Kohls and bought her a few summer things. It is so hard to know what size to buy for her as she grows so fast, but I guessed the best I could and hopefully the clothes will work out.

After Kohls, Gracie took over a two hour nap, but it was later in the afternoon, which made going to sleep tonight a little more difficult. I have a feeling morning will come a little too quickly for her.

Sweet dreams.

Lisa, Jeff, and Gracie

Saturday, March 6, 2010

Friday & Saturday

Sorry there wasn't a blog on Friday night. I layed down with Gracie at bedtime and I fell asleep also. Jeff also needed to go to bed early as he had to be up by 4:00 a.m. this morning for work.

Gracie had a pretty good night last night with a little restlessness toward early morning. She and I snuggled in until 7:00 a.m. this morning. She was in a fairly good mood, but had moments of crankiness. That all changed after her bath. She was the best little girl a mom could ask for the rest of the day.

Gracie and I were sharing a roll of Smarties candies. She had the last piece and was savoring it by holding it in her fingers and licking it. I kept telling her I was going to get it and I would chase her a bit. She was loving all of this as she LOVES to be chased. At one point she was running away from me and said "I got it". That would be her first sentence. :)

Gracie was looking at some pictures today and one was of Jeff a couple years back making this really cheesy smile. Gracie looked up at me with a very similar cheesy smile and said "daddy". She was totally imitating the picture. Looks like I live with two comedians.

Gracie and I were thrilled to get company this afternoon. Aunt Sheila and cousin Kayla stopped in to play. Gracie loved the company and had a fun time playing with both of them.

Daddy surprised us by coming home at 7:00 p.m., which was a little earlier than expected. This meant that Gracie was able to spend a little time with him before bed. When he came home she stood at the gate dancing.

There will not be a blog tomorrow night as Gracie and I are checking in at the Sleep Clinic to see if Gracie has sleep apnea or other issues related to her restlessness and our concern with how she stops breathing for about 10 seconds before she resumes. If you've got some extra prayers, we would love some for good results for Gracie's tests and that she is cooperative. Although to be honest, she is usually so good for appointments, she makes me proud.

Lisa, Jeff, and Gracie

Thursday, March 4, 2010

Thursday - Daddy's Girl

Gracie ended up sleeping for 12 hours last night. She awoke a little before 6:00 a.m. and was in a great mood all day. She was just plain silly at times.

She insisted upon taking her V-tech laptop along in the car to daycare. It plays music and she be-bopped the whole way there.

Jeff picked her up from daycare and they had a good time playing together at home. She was daddy's girl for the rest of the night. She had a lot of independent words tonight and was a very happy, funny girl. She ate a good supper and was excited to take her bath and splash her dad!

She even let daddy be the one to sing her to sleep tonight. Usually that is mom's job, but since daddy will hardly see her next week due to a conference he'll be working, I wanted them to be able to spend as much time as possible together.

It was a good day.

Lisa, Jeff, and Gracie

Wednesday, March 3, 2010

Wednesday - A Full Day at the Clinic

I'm writing the blog a little early tonight as Gracie is sleeping and I'm not sure I'll get a chance to do so later. We had a full day of appointments at the clinic, with no time for a nap.

Our day started out a little rough with some tummy problems, to the tune of having a blow out diaper that made it necessary to change our clothes at the exact time we should have been in the car on the way to the clinic. We cleaned that up and zipped to the clinic and got there in time. Our first appointment was with Dr. L in the Sleep Clinic. We answered alot of questions and talked about Gracie's sleep habits and our concern that she may have sleep apnea. We are scheduled to enter the sleep clinic on Sunday night, where Gracie will be hooked up to a ton of monitors and she and I will sleep there all night. We will then meet with Dr. L. at 11:30 a.m. on Monday to get the results.

Then Gracie and I went to the patient cafeteria for lunch. We were joined by a little boy (3 years old) named Kyon and his mother. It was great to meet these two individuals and Kyon had me in stitches most of the time. He was very curious about why Gracie was in a wheelchair and why she didn't talk, so I explained things to him and his mother was awesome about explaining as well. At the end Kyon gave Gracie a big hug and Kyon's mother told us what an inspiration we were. Wow -- who would have thought?

We did a little visiting while we waited for our next appointment - a tympanogram (sp?). This was to tell us if Gracie's tubes were still in her ear drums. The tech was AWESOME. He was the same one that did her last hearing test and he had her dancing. She did fuss when he put his "tools" in her ears though. She hates having her ears looked at.

Next we met with the ENT surgeon, Dr. D. Gracie's tubes are out of the eardrum, but still in the ear canal. We were thrilled to hear we had some options, one is back to the OR to take out the tubes and clean out the wax build up, two is to do a wait and see approach and follow-up again in 3 months. One ear is clean, the other (the one she pulls at) has wax build up and it would be hard to tell if she has an ear infection. Our third approach would have been to hold her down and have Dr. D. take the tubes out in the office. This would have involved alot of ear manipulation and more than likely an army to hold her down. We opted for the wait and see approach for now, with a follow-up in three months. We can always change our mind should we feel it necessary.

Then there was an hour plus wait where we had some drinks and snacks. Jeff was so kind and went to find me a Diet Coke, my drink of need. When he came back with it, Gracie saw it and said "Coke". I had no clue she could identify Coke products. She also saw someone microwaving their lunch today and said "cook". That's a word she has been imitating at home, but I hadn't heard her come up with it on her own prior to today.

Next we went to visit Dr. N. in neurology. This is on the same floor as Gracie's PT and OT appointments, so she was thrilled to see all of her friends. She took Rachel for walks around the floor, while Jan, another clinical assistant would pretend to chase her. Then her physical therapist Leslie came out to get another patient. Gracie, of course, thought she was coming for her and got all excited. Leslie was so sweet and asked the other patient if they would wait just a minute so she could say hello. Leslie and I explained that today wasn't her day to play with Leslie, but we would do that another day. It about broke both of our hearts when she signed "please".

Gracie loves, loves, loves Dr. N. Dr. N. was thrilled with her progress, was happy to hear that she is just beginning to put two words together. We had questions about the effect of anesthesia and our biggest question had to do with recurrence of her infantile spasms and were we out of the woods yet. We were thrilled to hear that it is extremely unlikely (as in very very rare) that Gracie would have a recurrence of I.S. Jeff and I bothed sighed in relief at that. Her age is with her on this. Dr. N. is excited to know that Gracie will be going to a couple of days of preschool in the Fall and felt we were really tapped into all of the right therapies. As always, she was very pleased with Gracie's social skills and really felt that she is doing so good overall. Although we know she is delayed, Dr. N. thinks she is making beautiful progress for a two year old. At the end of our appointment (where Gracie sat on Dr. N's lap for most of it) Dr. N. asked Gracie if she could pick her up. Gracie had no objections, matter-of-fact she put her head on her shoulder and snuggled in. Dr. N. carried her all the way out to the waiting room and she wasn't too sure she wanted to come back to mom.

Gracie fell asleep on the way to the ramp to go home. As I pushed her in her wheelchair, her head was resting on her knees. She fell back asleep in the car, woke for a moment when we got home. We had to wake her to get her seizure meds in her, but she fell right back to sleep. I think she is in bed for the night. No nap + busy day at the clinic = very tired girl. Come to think of it, that equals a very tired mom as well. I think daddy is feeling the same way.

Lisa, Jeff, and Gracie

Tuesday, March 2, 2010

Tuesday - A Very Happy Girl

Gracie was a very happy girl today pretty much from the moment she woke up. That was the theme of the day. She had a sparkle in her eye when I took her to daycare. Jeff picked her up and when I got home she continued to be a happy girl. I think it must have been her good night's sleep last night.

Gracie was in the best mood all night. She would interact with us, then go play her piano, then come back and interact some more. There were no fusses, there were no tantrums, just smiles and contentment. She was very talkative tonight too. She had opened up the towel drawer as she likes to do and then came in the living room. Jeff asked her to please go and close the drawer and she did!!!! YAY!

She is now sleeping peacefully.

Lisa, Jeff, and Gracie

Monday, March 1, 2010

Monday - Busy Day

Gracie had a somewhat restless night, but awoke in a good mood and was ready to start the day. She was a happy girl when I took her to daycare and was full of smiles. While at daycare she had one of her mondo bloody noses. They are scary because she loses quite a bit of blood and it takes a long time to get them to stop. I called the pediatric nurses to see if they had any advice other than running a humidifier and lubricating her nose with Vaseline, which we do already. After going through a series of questions, they really felt she needed to be seen. So we headed to pediatrics to get her checked out. Because she bleeds out of both nostrils, it's not just one that is always the cause, they don't believe they can cauterize her at this time. So the advice was to have her tip her head forward, pinch the bridge of her nose, and if the bleeding doesn't stop for 30 minutes to bring her right in. If these start to occur more often, we will need to have her checked for anemia as well.

We came home, Gracie took a nap, then we had a meeting with Gracie's early intervention teacher, physical therapist, occupational therapist, speech therapist, and their supervisor from the Birth to Three program through the public school system. Gracie just went through some standardized testing and this was a report on that and to talk through a plan for where to go next. Gracie made her way around and sat on just about everyone's lap and interacted well. Although the report was very accurate to her skills, it was hard to see the standardized scoring. Gracie does not do well with that. She was rated as "far below average" on cognitive skills, fine and gross motor skills, and adaptive/functional skills. She was rated as "low average" for social-emotional skills. Her communication skills are at a 18 month level for comprehension and a 22 month old level for expressive communication. While I agree with all of the observations of the Birth-to-Three team, it's still hard to see it on paper, especially when she is making such great strides. Couple that with Gracie is not motivated to do many of the skills asked of her in the standardized testing. We are going to take a new approach with her and I love that the team suggested this. It's a more routine-oriented approach for goals for life skills, such as routines based around getting ready in the morning, coming home at night, etc.

While it may be difficult to see "far below average" on paper, Jeff and I are both realistic. We know she has the ability to learn, we know we have to work hard with her, but we also know she learns through repetition and experiences. We are dedicated and enthused to continue to give her the quality time she needs to learn. From what I have learned about Sotos Syndrome, Gracie seems to be on the more high-functioning side of the syndrome. We are "Team Gracie" - her biggest fans, her biggest cheerleaders!

On a fun note, Gracie loves a specific Brad Paisley cd. She listens to it quite a bit. Tonight we had it playing and she went up to the cd player and said "tick". We asked her what she wanted and again she said "tick". She said it a few more times before it dawned on Jeff and I that she wanted a song that says something about "checking you for ticks". We turned that one on and sure enough, that is EXACTLY what she wanted.

Gracie had a great time splashing in the tub and it was just the thing to tire her out for bed. She was exhausted by the time 8:00 p.m. came around. She is now sleeping peacefully.

Lisa, Jeff, and Gracie