Thursday, December 29, 2011

Claritin is a Beautiful Thing

We gave Gracie a 24 hour Claritin yesterday and it did the trick, it kept the hives away for 24 hours.  She had the best night sleep (and so did I) that she's had in days.  She did have a few hives starting on her neck again this morning.  Jeff was going to keep an eye on it and give her more Claritin if needed. 

Jeff and Gracie had a good day yesterday.  They did some visiting and some errands and Jeff said she was very verbal all day and had come up with some new fun words which he couldn't remember (do you think dementia is setting in with his birthday just a few days away, hmmmm). 

When I arrived home Gracie jumped in my arms and we sat on the couch for awhile and just snuggled.  I could tell she was tired and she hadn't napped but was in mostly a good mood.  We ate supper, took a bath, played a little while, and she was ready for bed.  I really need to be better about putting her pajamas on before she gets too tired.  If I do it right before she goes to bed and is already too tired, it's a huge ordeal.  Last night she decided it would be much better to scream and forcefully hit her closet door over and over again rather than put on her pj's.  Of course with every few hits, she would say "owww" cause of course it hurt her hand.  I suggested she hit her pillow pal instead.  For some reason she found this funny and although she was still mad, every time I would direct her to her pillow pal there were a few giggles. 

Gracie and Jeff are hanging out again today and tomorrow I will join them.  We have an appointment at the clinic in the morning, but after that it's just errands and playtime.  I'm looking forward to some good family time.

Have a safe New Years Eve and weekend!

Love,
Lisa, Jeff, and Gracie

Wednesday, December 28, 2011

Wednesday - The Hives Return Again

Gracie and Jeff had a great day together yesterday.  Gracie was in a great mood, they did a few errands, and Gracie insisted she did not need a nap.  Her hives seemed to be under control through the day and by the time I arrived home last night she was in a great mood.  I got lots of hugs and snuggles and we had fun playing all night.  By the time we put Gracie to bed, I couldn't see much for hives, but they came back through the night and she had a very restless night. When I took a look in the morning light they were definitely back - her neck and stomach seemed to be the worst.  This morning we gave her some Claritin and we'll see how that effects her.  I would love to thank the manufacturer of this product....you put it on your tongue and it dissolves.  It apparently must taste good too, because when I gave it to Gracie she asked for more. 

I think Jeff and Gracie plan to do a little visiting today.  As long as they have field trips they are both happy. 

Hope you're enjoying your day.

Love,
Lisa, Jeff, and Gracie

Tuesday, December 27, 2011

Christmas!!!

On Christmas Eve day Gracie awoke bright and early to see that Santa had left presents under the tree.  She was so excited!  She was a bit spoiled and especially liked her princess castle tent!  She also got a power drill that is very fun to use, some Sesame Street figurines were a big hit too, as well as some other things.  We had a lazy day and enjoyed the Duncan traditional spaghetti and garlic rolls for our meal together.  We went to Christmas eve service at 4:00 p.m. and Gracie really enjoyed the music.  She also enjoyed when all the candles were lit.  We let her hold a candle too but hers wasn't lit.  She still found joy in holding it.

On Christmas morning Gracie awoke and was covered in hives.  I had no clue what the cause was...a food that she was allergic too?  Was it a new toy?  Something else in the environment?  We gave her Benadryl to help with the itching and she spent Christmas with my family in a bit of a tired stupor.  She still made the best of hanging with her cousins, but I did feel for her as she was so groggy looking.  We even had to forego her beautiful Christmas dress for something cotton and soft to make her as comfortable as possible.  By the end of the day Gracie's hives had pretty much disappeared.  She really didn't have much interest in her presents, it was all about being with her cousins and family.  That is until we got into the car...then it was like she was seeing her toys for the very first time.  She slept for about 30 minutes on the way home.  Just enough time to re-energize a bit so she could play with her new toys when we got home.

At 1:00 a.m., the itching began again and Gracie had huge welts of hives everywhere again.  I gave her some Benadryl and she ended up sleeping in til 8:00 a.m. - that was a treat for me, but I felt bad for her.  She was grumpy most of the day, but I couldn't blame her.  You just knew she wasn't feeling well and the Benadryl just made her tired and more grumpy.  I spent the day washing her bedding, new toys, and everything else that I thought might be causing the problem.  We did play outside for about 90 minutes and that was very fun for Gracie.  Her hives looked under control when she went to bed and she again awoke with them...but not quite as bad today.

When I got to work this morning, I contacted her allergist and he indicated the hives were probably not environmental or food related, he said they mostly see these with colds or G.I. infections.  Well Gracie has had a nasty old cold.  He also gave us some recommendations for some allergy meds to use that wouldn't interact with her seizure meds and that would not make her drowsy, so we'll try those today.  I talked with a colleague whose nephew had the same thing this weekend. 

Today Gracie and daddy are hanging out together.  They did come visit me for a little bit and Gracie was in a great mood.  She was running around and dancing.  I think she was happy to be out of the house.

I hope you all had a very Merry Christmas!

Love,
Lisa, Jeff, and Gracie

Friday, December 23, 2011

Friday - The Cold Continues

Gracie definitely has a full blown cold, but I'm happy to say she is sleeping better at night and so wakes up in a good mood.  Gracie has had a good week despite her cold.  On Wednesday night she brought home a book that she made at daycare and was so proud of it.  The first page said "I love my mommy because she fixes my hair."  Gracie got to color on it.  The second page said "I love my daddy because he makes me smile."  The book is laminated and is very special.  She also brought home a puppet she made of herself at school...it even has the perfect skin tone.  We've been having fun with that. 

Last night Gracie and Jeff were home when some carolers came to our door.  They scared Gracie and there were lots of tears.  They finished their song and quickly moved on.  I so wish I would have been there as I was just telling Jeff that caroling was a lost art that no one does it anymore. 

Rumor has it that Santa is coming to our house tonight while Gracie sleeps.  He just has so many children around the world to deliver gifts to that he needed to start a little early. 

Wishing you a very Merry and Blessed Christmas!

Love,
Lisa, Jeff, and Gracie

Wednesday, December 21, 2011

Grumpy Grumpy Grumpy

Gracie was a very tired girl last night and this not taking a nap at daycare thing does not help her cause.  When Jeff arrived at daycare to pick her up she was in her boots and mittens.  They had been outside and she didn't want to come in so refused to have either taken off.  I so appreciate her teacher's attitude of picking her battles and this just wasn't one to bother with.  We do the exact same thing.  She gave Jeff a pretty rough time til she was in the van headed for home.  I came home a little later as I needed to stop at the grocery store.  By the time I arrived she had been fed, but she was pretty grumpy from being tired.  We snuggled a little, we played a little, we gave her a bath and stuck her in bed.  She fell asleep immediately, but had a horribly restless night.  I think she is getting a cold and was all stuffed-up, which made it hard to breathe.  So she tossed and turned all night long and hollered in her sleep and woke up a hundred times and at 4:15 a.m. she announced to me that she was "awake".  She didn't fall back asleep either, but she was very grumpy all morning unless of course she was snuggling with mommy or getting piggy back rides from daddy.  She just looked droopy eyed. 

She perked up a little when she saw the babies at daycare and Ms. Alyssa.  I'm hoping she takes a nap today and I'm so thankful that today was not a school day.  Hopefully we can get some good rest in tonight too.  As with most kids, Gracie's mood is directly linked with how rested she is.

Love,
Lisa, Jeff, and Gracie

Tuesday, December 20, 2011

Daddy's Home

Gracie and I survived the week on our own.  Jeff arrived home from Chicago on Sunday night.  Gracie was very happy to see him only to give him the cold shoulder for awhile before becoming his best buddy again.  This is her typical style when Jeff travels. 

Our Saturday started out with a playdate.  Gracie was not into socializing and didn't want to play, so spent most of her time on my lap.  I think she enjoys herself, she just processes it a little differently.  She treated us all to a fall on the floor tantrum when it was time to leave and I pretty much dragged her to the car kicking and screaming.  (Not one of my most proud mommy moments.)  Thanks to our hosts for being absolutely gracious throughout!

Gracie took a long nap on Saturday afternoon and then didn't want to get out of bed.  So we did alot of snuggling.  Jeff Skyped with us for about an hour at supper time and that perked her up too.  On Sunday we had a low key day.  Uncle Chris and cousing Jason stopped by for a little while and that was fun for both of us.  We made a quick trip to Target after that and then we picked Jeff up at the airport. 

Yesterday (Monday) Gracie had an appointment with her neurologist.  Since our last visit 4 months ago she has grown two inches and is now 3' 10" and she weighs 56 lbs.  Her seizure meds are at a good level and we won't need to increase until she hits 59 lbs.  We've had no break through seizures since putting her on brand name meds about 9 months ago.  YAY!!!!  This is the longest we've gone with no seizure activity.  Dr. N. was thrilled with all of Gracie's verbalization, she even told her what Santa says "Ho! Ho! Ho! Merry Christmas!"  We also talked about potty training, but Dr. N. feels we just shouldn't push it and doesn't think she'll be truly ready til age 5 or 6.  She just doesn't seem to have the sensation to know to empty her bladder.  So I'll be patient. 

After our appointment, Gracie and I did a few errands, but she was a very tired child.  I knew I was in trouble when we went to the post office and the line was all the way to the door.  Gracie's patience was wearing thin, I was doing everything in my power to keep a positive attitude and keep her entertained.  It really wasn't working.  I must say everyone around me was being very sweet.  When it was time for the man in front of me to be helped, he turned to me and said "I think your fuse is shorter than mine, go ahead."  I thought his gesture to be very sweet. 

When we got home Gracie was increasingly tired and impatient.  She told me she wanted some pudding, she even went to the fridge to get it, but I couldn't get to it immediately (with the 15 seconds she thought I should) and so in her fit of anger she knocked a half full pitcher of black cherry koolaid off of the counter.  Of course when it hit the floor it exploded and there was red liquid everywhere.  It covered the floor, the cupboards, Gracie (who just happened to be wearing light blue and off white) and me.  She knew immediately this was not good.  She stood in complete stillness looking at me for my reaction.  She has come to learn that mommy's silence is not a good thing.  I picked her up, sat her in a chair in the kitchen and she was told not to move and she didn't.  She had to sit and watch me clean the whole thing up (this was not quick in the least  - it was everywhere).  For her to sit anywhere for any length of time is hard, but she did good.  Afterward we had a talk about patience and anger.  Oh, she had to wait for pudding til later too. 

Gracie took a 2-1/2 hour nap and was a much happier child when she awoke.  We had a nice evening and she was a happy girl this morning.  It was back to school and daycare today.  I'm hoping she is having a good day.  She was all smiles when we arrived at daycare, so I hope that is a good sign.

Love,
Lisa, Jeff, and Gracie

Friday, December 16, 2011

The Week in Review

Gracie's fever continued through Monday night and I stayed home with her on Tuesday.  She was very happy, just very very tired.  On Wednesday it was back to daycare for her and she had a good day.  They've been learning about families and have pictures of the daycare kids on a chart and then they get to add pictures of their family.  We are one of the few families that have carried through on this request, so all the kids seem to know me.  When I arrived the first day after our pictures went up, all the kids announced "It's Gracie's mom"! 

On Thursday it was back to school for Gracie.  We had a talk about how I really needed her to be a big brave girl and get on the bus.  I'm told she did great getting on.  She didn't want to get off once at school.  Once she did and they got into the routine I'm told she had a good morning.  Although it must have been stressful for her, because once back at daycare she was hitting the other kids if they got too close or looked at her.  Her daycare teacher does a nice job of redirecting her to a favorite book "Meoow" when she needs some time to de-stress.  I could tell last night that she was overtired.  A bath was great therapy for her and she was in bed by 8:00 p.m. and asleep by 8:01 p.m.

My heart melt moment for yesterday was that the kids learned about love at daycare.  Then each child was asked what love is and the teacher wrote their comments on hearts to stick around the room.  When Gracie was asked "What is love?"  She answered "Momma"! 

Today it was back to daycare and all the kids seemed to be having a hard time this morning.  Gracie was a little hesitant as her normal daycare teacher is off on Fridays, but there is another one that she knows that does a really good job with her too.  When I pulled up to daycare Gracie said "no".  I asked "Don't you want to go to daycare today?"  Gracie answered "no".  I then asked "Where do you want to go today?"  She answered "home".  I said "How about if we go to daycare today and stay home tomorrow?"  I held my breath for her response and was pleasantly surprised when I got a cheery "Otay!" 

Tomorrow morning we have a playdate scheduled and we're excited, then I promise we'll be home!  With the exception of maybe a stop at the store for Fruitloops...we're out.  This is not a good thing!

Have a great weekend.

Love,
Lisa, Jeff, and Gracie

Monday, December 12, 2011

The Weekend and Now a Fever

Gracie had a good weekend although she definitely had some behavioral issues.  Lots of hitting when she didn't get her way or things didn't happen fast enough for her.  I even got bitten once and she hasn't been biting for a while now.  So she spent a fair amount of time in time outs.  Consistency, consistency, consistency...right!  She also decided she didn't want to leave Target on Saturday evening and decided to show us this by sprawling out across the floor...of course the germ-o-phobic mom I am, this did not sit well with me.  Ugh.

We had some really great times this weekend too.  Gracie and I decorated the Christmas tree on Saturday morning and she loved doing that and seeing all of the ornaments.  Now she thinks she has a free license to take them off anytime she wants, so we are working on that.  We played outside on Sunday and that was a huge hit, she even hung out in her playset in the backyard and went down the snowy slide and got to swing.  She was smiles from ear to ear!

Gracie was also very loving throughout the weekend.  We got a lot of kisses and smiles and snuggles.  She was tired after all of the fresh air and fell asleep very quickly last night.  At 11:15 p.m. she was shivering uncontrollably and was very hot and running a fever.  So I gave her ibuprofen and she finally stopped shaking from the chills about an hour later.  Poor little one.  She had a restless rest of the night, and other than some extra gas, doesn't seem to have any other symptoms.  She is home with daddy today and is getting some extra TLC.  The fever creeps back once the fever-reducing meds get out of her system.  I'm hoping this is short-lived and she is healthy again soon.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Friday, December 9, 2011

Friday & More

Gracie's first week at the new daycare center has gone so much better than I anticipated.  It's definitely an adjustment, but Gracie really seems to like it there and they are very good to her.  Her class size is growing, which I don't love, but knew it would happen.  She seems to be doing fine even with the increase in number of kids.  I love her teacher and so does Gracie.  Ms. Elissa happens to be fluent in sign language and uses it with her classroom, that is a big plus for Gracie who knows quite a bit of sign. 

We did have one major meltdown yesterday when she was supposed to get on the bus at daycare.  Needless to say they handled it beautifully and got Gracie calmed down, but they ended up keeping her at daycare and she didn't go to school.  I'm just not sure what the trauma of the bus is.  So I've got to do some thinking around this and how to make that transition less traumatic for her. 

Gracie has not been taking naps, she rests quietly while the other kids sleep, but she isn't sleeping.  This makes for a majorly tired girl at night.  This isn't all bad as she has been sleeping the best she's ever slept at night, but she's also a little more moody.  Last night on my way home from picking her up she fell asleep in the car, so I drove around for almost a half hour just to give her a little rest.  I thought it would make our evening more pleasant.  I was right. 

Her new daycare is amazed at how much she eats.  I'm not surprised, she is a very good eater - she has to be to keep up her growth rate.  She continues to be mondo thirsty when she gets home.  We actually have a glass of juice ready for her in the car when we pick her up.

Gracie misses her old daycare and talks about them alot.  We pretend to call them on the phone and that makes her smile.

I'm looking forward to spending some good quality time with Gracie this weekend. 

Have a great weekend.

Love,
Lisa, Jeff, and Gracie

Tuesday, December 6, 2011

The New Daycare

So yesterday was Gracie's first day at her new daycare.  I think it went pretty well, with the exception of them forgetting to give her seizure meds at noon.  I got a call from the director at 4:45 p.m. with this information.  She was extremely apologetic and assured me it wouldn't happen again.  I had them give them to her then and we gave her evening meds to her much later.  They also gave her milk, she is outgrowing a sensitivity to milk and can eat most milk products now (aside from cream soups in recipes and actual milk to drink).  Gracie refuses to drink milk anyway, so I'm doubtful she actually drank it, but because water or juice wasn't given as asked, I'm pretty sure she didn't drink anything.  When she got home she drank 4 huge glasses of Gatorade.  I just couldn't give her enough to drink.  She also had the shakes, like she was cold, but she didn't seem cold and she didn't have a fever.  I'm thinking it may have had to do with the seizure meds being so late. 

We had some fairly strong behaviors in the evening, but I fully expected that.  Transition is hard for Gracie.  I even got kicked in the face while changing her diaper.  Lovely.  She just gets so worked up.  She was very apologetic once she cooled down and got some perspective. 

Today was a much better day, she hugged all the parents as they came into the room.  I'm told this was very well received.  She got along with her peers and tonight she was extremely verbal.  She was watching one of her signing videos tonight that she's watched before and they spell glue on it.  Well she spelled it before they did.  G-L-U-E!  She does have a very chapped chin and cheeks from the outdoors and her still drooling a bit.  There is a child at the center that is autistic that is in the room next to hers.  I'm told the two of them match hands alot through the window on the door between the room.  They seem to have a little connection. 

Today they gave her water instead of milk and although she was thirsty when we got home, not like yesterday.  I can tell she is alot more hungry at night too...and tired.  She is resting in the afternoon, but not actually sleeping. 

Hopefully it will continue to get better and better.

Love,
Lisa, Jeff, and Gracie

Monday, December 5, 2011

The Weekend, New Daycare, and SNOW!!!

Gracie's last day at our beloved daycare was Friday.  I think it will be a tough transition for her.  She kept asking for her daycare mom all weekend.  This morning she knew she was going to a new daycare and she would be riding a new bus.  She was very sullen all morning and even bit her dad.  We were late getting out of the house, she was super grumpy, and I had a rock in the pit of my stomach.  As we pulled into the new daycare center, Gracie remembered it and started clapping.  She went to hold her teacher's hand and got a little upset with me when I wanted a kiss goodbye.  I think she thought I was going to take her away.  So the drop off went beautifully.  I'm still waiting to hear how the bus transition went.  I really like her teacher at the new center, she even told me she went to the library and checked out some books to learn about Gracie's medical issues.  How cool is that! 

On Friday afternoon, Gracie's teacher from school came for a visit.  Gracie is doing very well and we'll increase her preschool attendance from three to four mornings a week starting in January.  Gracie enjoys school, but is very much an observer.  She takes it all in and needs to sometimes be encouraged to participate.  She is becoming much more verbal at school, but her teacher did get to see Gracie in action as to how verbal she is at home.  It was no surprise to us to find out that she is very unmotivated when it comes to anything in the Occupational Therapy category. 

On Saturday we had a beautiful snowfall and the temps were very mild, so we bundled Gracie up in her boots, coats, snow pants, mittens, hats, scarves, etc., etc. and headed outside to enjoy it.  She loved it!  She is doing so good walking in the snow.  The ice is still tough for her, she just can't recover once she starts to slip and ended up on her butt a couple of times.  We were out for about 90 minutes and she did not want to come in.  On Sunday we went out again and played in the snow some more.  Jeff also pulled Gracie in the sled and that was a big hit.  Our biggest cold weather challenge is mittens.  Gracie has huge hands so it's hard to get her hands in mittens and if we get mittens with too loose of tops, they fall right off.  She just doesn't understand how to keep the mittens on.  We just put an order in for some zip up mittens, I hope these take care of that challenge. 

We also put up our Christmas tree this weekend with the lights.  We still need to put the ornaments on it.  Gracie loves having the tree up and when we first plugged in the lights she exclamed:  "It looks beautiful!"  I'm enjoying winter and the holidays this year as Gracie gets so excited about it all.  I just love that. 

Have a great week.

Love,
Lisa, Jeff, and Gracie