Saturday - A Ride Outside

Mommy's on blog duty tonight!

Gracie had a pretty restless night, but only got up twice for a bottle and the best part is that she slept in til 7:30 a.m. That meant I got to sleep in too. It felt great. We have finally figured out how to get her to take her liquid medication without spitting it out. We give it to her in thin ml syringes inbetween bites of Toaster Strudel. So on some mornings we have to give her 13 syringes full of meds, but we get the job done.

We had a good morning and Gracie was in a good mood, but wanted to be held alot. She took a nap while I went to Target to stock up on everything we needed. After lunch and a short nap, we sent daddy off to a friend's house and to the grocery store and Gracie and I took a short stroller ride outside. It was 39 degrees and just too nice out to resist. I thought long and hard about taking her out with her diagnosis of pneumonia just under two weeks ago. She's been doing good and I thought the fresh air might do her good as long as we weren't out for long. I hope I don't get "bad mommy" points for this. She enjoyed the fresh aire and it put her in a good mood for the rest of the afternoon. She did some independent play this afternoon which was nice to see. She was full of smiles and snuggles and even a few laughs.

Bath time brought on more smiles and lots of splashes. I've come to LOVE bath time. Jeff and I are always soaked by the end, but the smiles and giggles are so worth it. I put her down to sleep a little while ago. She must have woke up for a bit, for when I went to check on her, she was in the corner of her room asleep, but her black stuffed kitty was by her side. She must have need a little play time before calling it a day.

Sweet dreams to all of you.

Love,
Lisa, Jeff, and Gracie

"Birthday" Friday

Well, it isn't really our birthday - but Grace is 18 months today.

The day started off pretty well. Grace decided to sleep in on her birthday, and slept until 7:15 this morning. Mommy barely got to see her girl before heading off to work.

Gracie ate a real good breakfast and had a special treat of Toaster Strudel today. We used it to help disguise her meds (the old "Spoon Full of Sugar" concept). Don't tell her of our dastardly plot.

Despite having only 30 minutes of nap today, it was a pretty good day - with spurts of inconsolability (I don't know if that's a real word or not - if you've cared for a child, you know what I mean though!).

We had fun playing Chase again. We also went to one of dad's friend's house to see the model railroad that he'd been working on. It was good to get out of the house for a while. Can't wait for the weekend when it is supposed to be WARM!

We did have a few issues today. Since we started reducing our meds, Grace's appetite has been reduced greatly. Well, today was not the case. She ate like she hadn't been fed in a week. This may have been the source of much of her crankiness -as it is possible that I did not recognize her ravenous appetite as soon as I should have. She was quite restless today too. She wanted up on my shoulder, but as soon as she got there she wanted down. Once down, she wanted back up. The restlessness coupled with hunger agitation was not a good combo for her. Come to think of it, it wasn't good for my back either (pass the Bengay please).

Bath time was great fun for all. Grace splashed like a mad-girl. Mom and dad got wet, but laughed anyway - just to see her in a great mood was fantastic.

Have a good and safe weekend, everyone. I am relieved of my typing duties for the weekend, and you will be treated to the "Ramblings of Mommy." I will be back Monday night.

Until Monday - thank you again for all of your support.

Go Steelers!!!

Jeff, Lisa, and Gracie

Sleep-in Thursday

Well - we slept until 5:30 this morning. That's sleeping in a little bit!

What a super day. Grace is full of mischief and we love to see it! She is becoming more curious each day (just like she used to be before this wild ride started). Her sense of humor is becoming more defined each day as well.

For example - this evening, she just finished her evening bottle and was about to take a few steps with the bottle still in her mouth. Well, mom has a rule - "No walking with a bottle in your mouth." As she started to take a step, Lisa said, "Grace, what's mommy's rule" - and, as if on cue, Grace spit the bottle to the floor - and turned to us with a BIG smile on her face - as if to say, "got ya!" I am not sure this translates to type real well, but it was REALLY funny.

We were in a good mood for 95% of the day - then we got a little grumpy when it was time to go to the Clinic for our weight and BP check. However, when we arrived and had an audience - we were all smiles. Grace loves an audience. I have GOT to teach that girl a card trick!

Well, off to bed. There's no telling when it will be time to get up.

Thank you for all of your prayers.

Until next time. . .

Love,
Jeff, Lisa, and Gracie

Visiting Wednesday

Yawn!! Boy, am I tired. Someone woke up at 4:30 this morning - well, actually, we all woke up at 4:30 this morning, but only one of us did so voluntarily. That would make 2 days in a row. I think I need to introduce my girly to Jay Leno.

However, it did make for an early morning nap (8:00 - 10:00) with dad catching a few zzz's too. We both needed it. After that, we played some more and read books. Grace is getting much more into books again. There was a time, when we were on our highest doses, that she would not sit still for books at all (prior to that, we could read for 30 minutes at a time). We are now starting to read 4 - 5 books at a sitting. Grace is also getting better about turning the pages at the proper time again.

After our afternoon nap, we went for a little field trip. We stopped off at daycare for a short while. Imagine our good fortune to have shown up right at snack time! Grace had a good time "visiting" with all of her friends. We also stopped to visit some of dad's co-workers at the Support Center. They all ooh'd and aah'd appropriately and generated alot of smiles from Grace (again proving that she is the cutest girl in the world - but then again, I must admit, I'm biased).

Milestones for the day:

• We clapped our hands for the first time - however, since she had mittens on and there was no sound - was it actually a "clap"?
• Lots of splashing in the tub again - even more than before. She was all smiles while in the tub - another sign that she is getting back to her old self. Mom and I were soaked.

Oh look, I'm long winded again. Time to close!

Our best to all of you. Thanks for reading.

Love,
Jeff, Lisa, and Gracie

Wet Tuesday!

Wow, what a day! Grace was in a pretty good mood for most of the day. She is still wants to be held alot and isn't really up for much independent play. She will play if I sit with her.

Our favorite game (again) today was Chase. Today I did something new. As she was chasing me, I doubled back around a corner. When she came into view I "leaped" out giving her a minor start. OH, did she SCREAM!!! Then she laughed hysterically and was ready to chase again.

I call today "Wet Tuesday" because, due to my own fault, Gracie became the unstoppable kissing monster today. Well, unfortunately Gracie seems to think that giving a kiss involves getting as much saliva in your mouth as possible, then leaning into the other person with all of that saliva on your tongue and the just letting it fly. She must have lost about 12 gallons of saliva today & 8 of them landed on my cheek (may I have another towel please?).

Overall a good day. I could maybe get used to this Housedad thing. Hmmm . . .

Thanks again for all of your thoughts and prayers.

Love,
Jeff, Lisa, and Gracie

What a Monday!!

The weekend has passed and I (Jeff) am again authoring the Gracie Update (no - read it anyway!).

It was quite the interesting day. It was a 2 bottle night, followed by Gracie getting up a little after 7:00. Breakfast was an hour long, as she exercised her independent thoughts and refused to take her meds. We ended up spitting much of it down the front of our bib. I don't mind her "speaking" her opinion, but I wish she would "voice" it on something less critical!

It was a day full of snuggles and carrying. We did have fun though, playing with numerous toys, reading some books, and watching a little TV.

Grace was in a pretty good mood. Again we played "chase" with us taking turns as to who was the chaser and the chasee. This game always gets tons of laughs (from both of us).

We were all in a GREAT mood after supper. Bath time was especially fun, as Grace was splashing like mad in the tub. We were all soaked by the time she came out of the tub! This is so awesome, because she just started splashing again in the past few days, otherwise hasn't done so since October. The rest of the night was full of laughter. Grace was hilarious both in her antics and what she found to be funny.

We went to bed about 7:45. A long day ended. Not bad for a girl who's only nap was for 45 minutes today.

Looking forward to more fun tomorrow - if only I can only outsmart her enough to get those meds taken. Find out how it goes in the next edition of The Gracie-eeee .... Update!!!!!!!

Love,
Jeff, Lisa, and Gracie

Stay Warm Sunday

Today's blog entry is brought to you by Lisa (aka mommy). Gracie had a fairly good night last night. She did get up at 12:45 a.m. and again at 3:30 a.m. for a bottle, but then slept until a little after 6:00 a.m. I think it was the smell of daddy's bagel toasting that really woke her up. She just couldn't let daddy eat alone.

Gracie's tummy was acting up today and she didn't really want to do much other than be held most of the day. She took a 45 minute nap this morning and then a 3 hour nap this afternoon. She's been very tired lately and her afternoon naps seem so peaceful, so I think she is healing from the pneumonia and that is a good restful time for her. I snuck in at the end of her nap and took a snooze with her.

This afternoon I gave her wagon rides in the basement which she thoroughly enjoyed. We also sang alot today...her favorites are "Itsy Bitsy Spider" and "The Wheels on the Bus". They never fail to produce a smile.

We will start to decrease the Prednisolone a little bit this week. We'll give her a full dose one day and the next it will be decreased, then a full dose the next day, etc. She also will finish her antibiotic from the pneumonia on Wednesday. I think taking the two antibiotics at once cause her tummy to feel pretty crummy at times.

Have a great week and stay safe and warm.

Love,
Lisa, Jeff, and Gracie

Sleepy Saturday

Mommy is in charge of the blog entry this evening as Gracie and I spent the day together.

Gracie was still a bit restless last night, but only got up once for a bottle and that was at 2:45 a.m. She awoke at 5:50 a.m. to start the day. She had plenty of smiles for us. She had a pretty good day but was quite tired. She slept for 45 minutes this morning and then took a nap that was 3+ hours this afternoon. She definitely needs the rest to get over her cold and heal from the pneumonia.

The last couple of days Gracie does not want to stand or walk much. If you set her down on her feet, she just plops to her butt. I'm trying to figure out if she is just too winded or tired with the pneumonia or if the extra weight is starting to bother her. Time will tell.

We gave Gracie a much needed bath after lunch today. She was the splashing queen. She was so happy in the tub. She hasn't splashed that much for about three months. Jeff and I stood there in our soaked clothes and just smiled at each other. Another sign that our girl is getting her own personality back.

Gracie was in a good mood this afternoon and evening, but wanted to be held most of it. Since she had a long nap this afternoon, she wasn't quite ready for bed at her usual time, so we just tucked her in. Sweet dreams.

Stay warm.

Love,
Lisa, Jeff, and Gracie

A Fun Friday

Friday started out a little rough. It was a 2 bottle night, so our nightly consumption is down, but Grace woke up at 4:30 and then stayed up. We tried everything to get her to go back to sleep. We sang songs - even my sure fire rendition of "Cab Driver" (look it up, it's a beauty!) failed to put her back to sleep. Grace was very smiley - I wish she would've let me in on the joke - but maybe I was too tired to get it anyway.

After putting up a valiant but futile battle against the Un-Sandman, we decided to get up and have breakfast. We ate breakfast and watched Arthur on PBS (I love that theme song). Finally we went back to sleep at about 8:00.

When we awoke, everything was GREAT. We had a super day. Grace was a laugh a minute. The morning was full of play and fun. We had a good lunch and then a long nap in the afternoon. She was a little more clingy after the afternoon nap, but still in a great mood. We played "chase" for a little bit (albeit a slower version, since she can't run yet, she crawls to get away), sang more songs and just played. Grace laughed alot - which, in turn, makes me laugh.

One thing that is really neat is that now that Grace is on lower doses of medication - and not so groggy all of the time, she seems to understand more and more each day. Today we had a little talk about the order of events - specifically about securely attaching the diaper and THEN crawling away - and, wouldn't you know it, she stayed perfectly still until we were done. It is exciting to see her actually "get" things.

Over all, it was a great day. To top it off, we are now spasm free for 23 days.

Thank you for your continued prayer and support.

All the best,
Jeff, Lisa, and Gracie

Uncreative Title Thursday

It was another rough night for the girl. Lisa sat up and rocked her for about 45 minutes, and then I ended up walking/bouncing her for about an hour before finally falling asleep on the couch at about 4:30 a.m. Again, Grace was having a hard time breathing while in a lying position. After mom left for work, Grace and I napped until a little after 8:00.

Grace had a good day. We had lots of fun singing, walking and playing. Grace is becoming more of her old self. She teased dad again today, stole my glasses (putting about 8,000 fingerprints on them in the process), and just did alot of stuff that makes me laugh.

Grace took a 2.5 hr nap this afternoon. I felt sad having to wake her up, because for the first time in a few days she was resting peacefully and breathing without wheezing like crazy. But - today was "weigh-in" day where we go to the Clinic and get weighed, blood pressure - and an added bonus today - blood draw. Grace was a trooper for the whole process. Didn't even cry when they stuck the needle in her arm.

I think the reduced meds have certainly changed her moods. The ladies that do the blood draw, who know us enough that they say, "Oh look, it's Gracie" before we even check in, noticed that Grace smiled at them for the first time since we have been having the weekly blood draws. She is indeed returning to be our social, smiley girl!

Love to all,

Jeff, Lisa, and Gracie

Wednesday With Dad

Today was Dad (me) and Grace's first day alone together as I stay home with her as Lisa heads back to work. I know many of you are expecting to hear that I fell flat on my face (not out of spite, but for the humor of it). I am sorry to disappoint you, but there was no face falling today!

Grace had a rough night of sleep. She did have a hard time breathing in a flat position. We took turns sleeping in chairs or the couch. I did have one scare last night. She and I were sleeping on the couch at about 3:30 a.m. I woke up to notice that about every 30 seconds her leg would jerk up towards her body. "Oh no, here we go again," I thought. I was relieved to find that the problem was that her leg kept sliding off of the couch and, in her sleep, she kept pulling it back. After a body shift, that scare was over!

While she was still clingy for parts of the day, it is clear to see that the reduced medication is bringing back her old personality. Grace chatted and sang for much of the day. She got into the type of mischief that a 17 month old should. She even played a few tricks on dad - and then grinned from ear to ear when I would finally say, "are you tricking me?"

Her appetite is down a little bit too. She was not the ravenous girl that we have been used to for the past few months. She did not even "share" my bagel this morning. When I offered some, she just motioned, "no thanks, dad. I'm good." How depressing - I'm already feeling unneeded. :-)

Lisa's fear about Grace being a daddy's girl has not yet come to pass. When Lisa got home tonite, Gracie nearly leapt from my arms to greet mommy.

Glad to say that we are now spasm free for 21 days (unless you count the couch thing!).

Thank you for all of the prayers and support.

Love,
Jeff, Lisa and Gracie

A Tuesday of Smiles

Gracie had a pretty good night last night. She still has labored breathing, but that is to be expected with the pneumonia. She awoke at 9:30 p.m. needing a bottle and a little snuggling and then slept until 3 a.m. That was a treat. She was up again at 5 a.m., 6 a.m., and then went down until 8 a.m. Jeff and I slept in til then as well. It felt great.

We are starting to see signs of our good natured Gracie returning as we've decreased the Prednisolone. She sang, she smiled, and she jabbered throughout the day. She also initiated some independent play a couple of times. She still needed a lot of snuggling and holding and we were only too happy to do it.

We had a follow up appointment with Gracie's primary pediatrician this afternoon and things are looking good. It's still more of an effort for her to breathe and her oxygen saturation is around 93% - so we still have some room for improvement, but all in all she's doing good. We'll have a follow up chest x-ray and appointment with Gracie's pediatrician in a month to make sure all continues to look good.

Gracie did start to run a low grade fever again this evening, but a little Tylenol seemed to take care of that. She was a very tired girl and is snuggled in, hopefully having sweet dreams.

Tomorrow I turn the blog over to Jeff as I return to work. I'm extremely thankful to my boss and all of my colleagues for covering for me and taking on extra work to allow me to be gone for so long. Jeff will be off of work to care for Gracie for approximately a month. Our hope is that by that time she will be on a low enough dose of Prednisolone that she won't need the constant holding and the restlessness and irritability will be gone.

We still welcome all prayers. We continue to pray that Gracie heals from her pneumonia and that as we reduce the steroids, we remain spasmless.

Love,
Lisa, Jeff, and Gracie

Monday - A Day in the Hospital

We had a pretty rough night in the hospital. Gracie didn't fall asleep until 2:30 a.m. Her fever was 104+ degrees and we just couldn't get it to break. Add to that she was having trouble breathing and her little heart and lungs were working way too hard. The fever finally broke somewhere around 4:00 a.m. thankfully. She was given an oxygen mist to help her breathing and she slept in til 8:00 a.m. Needless to say she was one sick little girl and the pediatricians were frequent visitors to our room. They too were concerned.

The diagnosis is pneumonia, but we are unsure at this point if it is viral or bacterial. The probability is that it is viral, but we are treating it with antibiotics as if it were bacterial. With Gracie's compromised immune system, we just can't take any chances.

Gracie perked up midmorning and by this afternoon she wanted to get down and explore. A little hard to do with an IV in your arm and wires monitoring your breathing, pulse, heart rate, etc. Her breathing is still a bit labored and she has a nasty cough, but all in all, she is doing so much better. We were happy to be able to bring her home this evening. The minute we walked in the door, she was smiles from ear to ear. She layed on the living room floor very content and just smiled. She was in a very good mood this evening as well.

Our nurse today asked us if we had been in the hospital before, because everyone seemed to know us. This would be stay #4 and it's beginning to feel like family. I think we should hold off on visiting that family for awhile. Our medical team was fantastic!

We have a follow-up appointment with our primary pediatrician tomorrow. We need to keep a close eye on this.

We also decreased Gracie's Prednisolone to one dose today. I don't even think she got the full dose as she did not want to take it in the hospital. Once I finally got it in her mouth, she wouldn't swallow and let much of it drain out. She had better get past this bad habit.

She is now asleep and I think Jeff and I will be following shortly. It's been a long two days.

Thanks again for all of the prayers and good wishes. They mean alot to us.

Love,
Lisa, Jeff, and Gracie

Saint Marys Sunday

Today’s edition of The Gracie Update is brought to you by the until now silent partner (who would've ever guessed I could've stayed "silent" this long??). You guessed it. Today you’re getting . . . the dad report.

Today started out the same as most others. It was a restless, 3 bottle night, but otherwise unremarkable. Again, Grace took great joy in mooching (uh, I mean sharing) dad’s breakfast bagel. In the afternoon, Lisa went to Target, leaving Grace and me all alone.

Grace and I had a good time. We played and sang songs. Eventually Grace went down for a nap. When she awoke about 2:45, she was short of breath and quite warm. Without bogging you down in all of the details (which I am often prone to do), we took Grace to the hospital about 3:45, where she was found to have pneumonia.

Grace has been admitted to the hospital. Lisa stayed at the hospital and dismissed me at about 11:45 p.m. (someone had to write the update).

I am supposed to get a good night sleep, and then relieve her at the hospital on Monday morning, so she can come home to take a nap.

On the upside, we have been spasm free for 18 days!

Thank you for all of your prayers and kind wishes. They really do mean a lot.

Love,
Jeff, Lisa, and Gracie

Saturday - A Cold Has Set In

Gracie had an extremely restless night last night as a head and chest cold has set in. She didn't need to eat as often through the night (only every 3 hours) but was stuffed up and kept coughing. We'll need to keep a close eye on her cold, as immunities are compromised when on steroids, so something as small as a cold could turn into something much worse. We had hoped to take her out in her new sled tomorrow, but I think that will have to wait a bit longer.

Gracie's tummy was bothering her again today. With the extra added weight, I think it puts pressure on her stomach. Today she sat up after drinking a bottle and threw it all up. Yet, she eats like we never feed her. It's hard to know when to limit her food intake, we do pretty good at making sure snacks are small and nutritious, but at mealtime it's hard to limit her. However, we must or she would eat herself sick. At first she stuffs it in her mouth by the hand fulls, then slows down a bit.

Gracie took a 2-1/2 hour nap this afternoon. She wanted to be held for a good part of the afternoon, but did play a bit and thought it was hilarious when she pushed her V-tech walking toy over, on purpose. I'm amazed at her strength.

Music seems to be Gracie's great soother. She was restless this afternoon, so I turned on the CMT music award reruns and she sat on my lap watching the performances. She rarely just sits on someone's lap and is content. We also listened to a couple of CD's and danced, that is usually a hit. We got great giggles when I sang how "Gracie and Mommy are buddies!" A made up song that Auntie Sheila used to sing to her kiddos.

She is now sleeping, but is again quite restless. Once again we are ecstatic to say...no spasms today...this is day #17! Wendy...no coincidence, we have waited upon the Lord and he has answered our prayers.

Love,
Lisa, Jeff, and Gracie

Friday Tummy Troubles

Gracie was only up twice last night for a bottle, but was still quite restless in her sleep. She awoke at 5:15 a.m. and was only too glad to help daddy eat his bagel.

Gracie had tummy trouble all day and wasn't up for playing at all. We did read a book or two, but most of the day she wanted to be held and bounced. She did take a 2 hour nap this afternoon.

I made her favorite lunch - goulash, so that was a highlight of her day. She was also a very happy girl in the bathtub tonight. Jeff and I have found that she loves the song "Old MacDonald Had a Farm" and the more we sing it when she is in the tub, the happier she is and the more she kicks in the water. We put on a music DVD of Michael Monroe this evening to soothe her. For some reason, he does the trick. Her love of music makes us think that there is music in her future.

Gracie and daddy are snuggling now and we're about ready to head to bed. We are elated to say that we are on day 16 of being spasm free.

Wishing you all a warm, safe weekend.

Love,
Lisa, Jeff, and Gracie

Thursday....BRRRRRRRRRRRRRRRRR!!!!

Gracie had another very restless night and was up every 1-1/2 to 2 hours for a bottle. It made for a pretty short night. She was only too happy to wake up and greet the day. After breakfast she took a short nap and then we braved the -20 degree temps to visit daycare for a short while. Her tummy was bothering her all day, so she wasn't super smiley or playful today. She was not happy to be out in the cold. I had her all bundled up and a couple of blankets over her as well in the car. She didn't move until the car started to warm up. She just sat there with slits for eyes. Once the heater started to kick in, Gracie started to sing and jabber.

After lunch Gracie took a 2-1/2 hour nap. I slept with her for 1-1/2 hours. We both needed that. Then we headed to the clinic for a blood pressure and weight check. Both went up a bit too much. Gracie is now over 35 pounds. Her blood pressure was higher than normal too. We'll need to keep an eye on that.

Gracie had a hard time settling down to sleep tonight. Her tummy was still giving her trouble. A bottle of formula helped to settle it a bit. She is now fast asleep.

We are still spasm free!!! :)

Love,
Lisa, Jeff, and Gracie

Wednesday - A Day to Hibernate

Another restless night with frequent feedings, and again Gracie awoke bright and early at 5:30 a.m. ready to welcome the day. Secretly I think she likes getting up early so that she can snitch bagel pieces from daddy's bagel sandwich before he goes to work. It's so sweet, Jeff sits on the living room floor on a blanket watching TV eating his bagel and right at his side is little Miss Grace anxiously awaiting pieces of daddy's breakfast.

Getting up that early can be pretty tiring, so Gracie went down for a nap at 9:00 a.m. and slept until noon. I kept checking on her to make sure she was still breathing. After lunch we played a bit and then Auntie Kathy stopped by for a visit. Gracie had lots of smiles for Kathy. Then she took a short nap on mommy's shoulder followed by a chocolate chip cookie for a snack. She doesn't get those very often but seemed to enjoy it, despite not usually loving chocolate.

After a fun time in the tub, Gracie was more than ready for bed. I will follow shortly as I didn't nap with her today and I can tell!

Again, I'm happy to report a spasm free day.

Love,
Lisa, Jeff, and Gracie

Tired Tuesday

Gracie had another very restless night. She was up at 5:45 a.m. to welcome the day. She wanted to go to work with daddy, but alas that wasn't to happen. Gracie's ECSE (Early Childhood Special Education) teacher came to work with Gracie this morning. Gracie was very tired and clingy and didn't want to cooperate too much. She did sit with Emily to read a book and played a little bit. She had smiles, but wanted mommy pretty close.

Gracie was really tired today, she slept for 2 hours this morning. I took the opportunity to snooze with her for a while. This afternoon she slept on and off, but only if I was holding her. She did not want to be set down this afternoon, she wasn't happy unless she was being held. I could tell her tummy was bothering her again today.

Tonight after supper we took her downstairs for more rides in her wagon. That was great fun, she smiled, she laughed, she enjoyed herself.

She continues to remain spasm free! We thank God!

Love,
Lisa, Jeff, and Gracie

Snowy Monday

The restless nights continued. Gracie was up every two hours for a bottle and I awoke more exhausted than I have been in a long time. Gracie, however, woke up in a good mood. Gracie has become more and more puffy, outgrowing all of her clothes. This has been quite noticeable over the last week. I'm sure all the night feedings don't help this cause. I went to dress her this morning and found that she pretty much had nothing that fit over her tummy. This prompted a trip to the mall, where we bought lots of 4T shirts and sweatshirts to keep her warm until her tummy starts to go down. She should be good now as we started to reduce the Prednisolone today. Only two doses today instead of the normal three. I noticed a difference in her overall mood and willingness to play on her own for short bits of time. She even sat down with me and we read 4 or 5 books. With the three doses, she was just too restless to sit that long. She still continues to want to be held and bounced, but we have some breaks.

Gracie took a two hour nap, although it was a bit restless, but awoke with smiles. At 6 p.m. we had a blood draw at the clinic and Gracie did not flinch or cry for this. She was a brave girl and just sucked her thumb and held her blanket. I think it helps that she now knows all of the lab techs and they know her. We walk up to check in and we have them all say "Hey, it's Gracie!" That is before we even tell them who we are or give her clinic number. She's becoming a popular little girl! :)

We are happy to say that with the reduction in the meds Gracie is still spasm free!!!! Our prayers are that she continues to be. If you have a minute we would appreciate your prayers for the same. Thank you!

Love,
Lisa, Jeff, and Gracie

Uneventful Sunday

Once again Gracie had a restless night and was up every few hours to be fed. She awoke at 6:00 a.m. and was ready to say hello to the day. I tried to coax her to snuggle with me for a few more minutes of shut eye, but that was not going to happen.

Our day was fairly uneventful. Gracie did play a little here and there, but as happens most days, she wanted to be held and bounced a good part of the day. I did take her downstairs and give her rides in her new wagon that she got for Christmas. Since it is too cold to take it outside, we have it in our family room for now. That was great fun and Gracie had lots of smiles.

Thankfully, Gracie continues to be spasm free. Tomorrow we will decrease her Prednisolone from 3 doses per day to 2 doses per day. I'm hoping that will help with the restlessness and her need to be held constantly. I think the Prednisolone bothers her stomach most days too, so hopefully a reduction will make her feel better.

Have a great week.

Love,
Lisa, Jeff, and Gracie

Saturday Outing

Gracie had a pretty good night and was up for only three bottles. She slept in til 6:20 a.m. and that felt good. She was in a good mood for most of the morning. She still wanted to be held alot, but also got down and got into a little mischief.

Here is what I believe she was thinking today: "Oh is that a notebook on the table, I bet mom would prefer that on the floor. Oh and there is an invitation on the table, I'm just positive mom would want me to hold onto that and lick it...or maybe bite off the corner. This tastes kind of weird, but I am kind of hungry. Ahhh mom, why did you take it out of my mouth, I was just starting to enjoy the taste. I wonder what mom would do if I took the mouse from the computer out of her hand. Oh she just put a duckie sticker on my hand. That's kind of cool. I'll just wait til she turns her head and I'll stick that in my mouth too. Hey, I wonder if I can find anything fun in the wastebasket. Oh bummer, it's empty. "

It was great to see her on the move for a bit. I'm hoping we see more of that when we bring her down from the Prednisolone.

We took Gracie to Target with us this afternoon for an outing. I think she was going stir crazy in the house. She loves to get out and was all smiles when I put her in the van. She did great in the store, but started to get fussy on the way home. She was oh so tired. These outings can be very exhausting. She slept for an hour and a half, but was very sober and tired the rest of the afternoon into early evening. She did get a second wind with lots of smiles and jabbering right before bedtime. I almost hated to put her to bed. I was having too much fun.

Love,
Lisa, Jeff, and Gracie

Friday with Daddy

Gracie had another restless night. I'm pretty sure that is what we will continue to see until the Prednisolone starts being decreased. She was up about every two hours for a bottle. She awoke bright and early at 5:30 a.m. and was ready to start the day. Unfortunately, I awoke in pain reminiscent to pre-endometriosis surgery and knew there was no way I could take care of Gracie, let alone stand up straight, so Jeff ended up staying home from work to take care of "his girls".

Gracie had a pretty good day, as always she wanted to be held most of the day, but did get down on occasion to play, walk, pull something off of the counter top (just because she can), or explore. She took a 2-1/2 hour afternoon nap. This is starting to become the norm and I can't say I mind it. It gives me time to get some things done in the house.

Gracie had smiles for us and even some laughs, especially when she and daddy played tug of war with her empty bottle. She can be such a little nut sometimes, it just makes us laugh. She also loves to hear Jeff laugh. She usually starts in too, even if she doesn't know what he is laughing about.

Tonight she was so tired, as I was filling the humidifier for her room with water, she curled up on the kitchen rug beside the sink to wait for me.

Gracie continues to be spasm free!!! We thank God every day for this triumph!

Wishing you all a good weekend.

Love,
Lisa, Jeff, and Gracie

Tired Thursday

Gracie had another restless night. She was up about every 2 hours for a bottle which made for a short night. She awoke about 5:30 a.m. and was ready to be up. She was daddy's girl this morning and had some nice smiles early on. Her good mood didn't last long as she was experiencing some stomach upset. Gracie's physical therapist Sandy came by today, but Gracie wasn't in the mood to do too much. She was a little worried that Sandy might want to take her away from mommy. She did show Sandy how good she is getting at walking and balance. Sandy gave us a few things to work on when Gracie is up to it.

Gracie took a 3-1/2 hour nap this afternoon -- I was in shock. I took a nap with her for the first hour, then I kept checking on her to make sure she was still breathing. She hasn't slept that long in a really long time.

This evening we went to the clinic for a weight and blood pressure check as well as blood labs. Her weight is just over 33 lbs. and her blood pressure was just fine. She did very good with the blood draw also.

Gracie was a happy girl this evening, but tired. When 8:00 p.m. came along, she was pretty much ready for bed. I think I will join her shortly.

Love,
Lisa, Jeff, and Gracie

A Wednesday of Visits

Gracie had a better night last night, but awoke three times to be fed again. I got out of the shower this morning at 5:30 a.m. to find her sitting on the living room floor with daddy, sharing his bagel sandwich. She had a grin a mile wide when I greeted her.

Gracie had a good morning, the best she has had in a while. She did some walking and playing. We visited daycare for a little while this morning and she was very happy to see Barb and Michelle and some of her kiddo friends. She took a little time to cruise around and check out the toys. Gracie is a major thumb sucker, but it was just a little too cold to leave her mittens off on the way home. Since the roads were a little slick, I was busy concentrating on driving but I could hear her moving her hands back and forth and working at something in the back seat. When I finally got to a stoplight, I turned around to find she had worked her mitten off of her thumb, it was still on her 4 fingers and thumb was in her mouth. She was so proud of herself...another big smile.

Gracie took a 2-1/2 hour nap this afternoon. I was shocked as her naps these days are much shorter. We also had a visit from my friend Julie and her three cherubs, Katelyn, John, and Baby Noah. Unfortunately Gracie wasn't too social and as much as the kids would have loved to play with her, she really didn't want any part of the fun. Afternoons and evenings tend to be her really moody times. I, on the other hand, enjoyed the visit immensely.

Gracie enjoyed a warm bath tonight and is now snuggled in.

Love,
Lisa, Jeff, and Gracie

Tired Tuesday!

Gracie had a very restless night last night again and she woke up at 5:30 a.m. to greet the day. Morning is her best time of day and she was a little more active in the early morning. She did some walking and I coaxed her into playing with some toys. We also read a few books. We used to read book after book after book, but she is a little too restless for that on the Prednisolone, so we usually only get 2 or 3 in at a time, and sometimes just one.

Gracie took two morning naps on my shoulder. We had some lunch and shortly after we headed to the clinic. We stopped by work for a little bit and we were overwhelmed by all of the good wishes and cheers of encouragement and happiness with our results yesterday. Then we headed to meet with Gracie's pediatrician. At this point Gracie was tired and pretty uncooperative. She did show our pediatrician her walking skills. Our appointment was a well child visit, we do these a little more often for Gracie than the norm. The primary purpose of this visit was to talk about intervention for speech. We decided that with all Gracie is going through, we would hold off on a speech consult at this time and revisit the idea in 8 weeks once she was pretty close to being off steroids. We also had a goal of weening Gracie off a bottle by 18 months and we also decided this was not the time to pursue that.

Gracie was so tired from not having an afternoon nap that she is now asleep. I wonder if my night will be shortened or if she will sleep through -- with feedings of course.

Love,
Lisa, Jeff, and Gracie

Our Prayers Have Been Answered!

Gracie had her EEG this morning and as always hated every minute of it. I was told they always know when Gracie has her EEG's by the screams and cries down the hall. She is heard!!! We were ecstatic when Gracie's pediatric neurologist shared the news that the Infantile Spasms are GONE!!!!! Jeff, Gracie's physician, and I all cheered and Gracie beamed from ear to ear. We will continue to keep Gracie on the full dose of Prednisolone for one week, then will slowly decrease the amount over the next ten weeks. We also will continue to keep her on Vigabatrin and once she is off the Prednisolone, we will begin decreasing the Vigabatrin. Our pediatric neurologist feels that it may have been the combination of Prednisolone and Vigabatrin that has brought us to this desired result.

Gracie's EEG continues to show a slower activity than is normal, this is representative of her learning and motor skill delays. We will do another EEG in 6 months to check the progress of this. With Gracie's diagnosis of Sotos Syndrome, we are not surprised by this slower activity. We are encouraged by Gracie's continued progress with her motor skills and cognitive skills. When other children have I.S., the norm is to lose skills, our determined Gracie gained many skills and continues to do so.

Gracie is at high risk for the Infantile Spasms to return, so we must monitor her closely. If we even see one spasm it warrants a call to her pediatric neurologist and treatment to begin again. We hope and pray this doesn't happen, but if it does, now we know what treatment she responds to.

There is much excitement in our home tonight, as well as a feeling of thanks to God who has seen us through to this healing and to all of our family and friends (as well as people we don't even know) who have been praying for our little cherub. Our prayers have been answered and we are thankful!

Love,
Lisa, Jeff, and Gracie

No Spasms Sunday!

Gracie had a much better night last night and was only up twice to be fed. I kept waking up thinking I should be making a bottle and then would go back to sleep only to awake again, just sure I was needed.

Gracie had lots of smiles for us today, but insists upon being held and bounced the majority of the day. Just for a change of pace I find that if I dance around with her that seems to be acceptable too. So for all of my neighbors reading this, if you look in my window and see me dancing and acting weird, just know I'm entertaining Miss Grace. I think the Prednisolone just makes her tummy uncomfortable enough that she doesn't want to do much of anything except be held and eat, she is always happy to eat.

I'm happy to say that Gracie had another zero spasm day...that is a total of four in a row. Tomorrow we have her EEG and get the results directly following it. We are optimistic and prayerful that we get good news. I don't look forward to the actual EEG itself, Gracie hates getting the probes stuck to her head and cries through most of that part. Her scars from previous EEG's are just starting to lighten - it really takes a while for them to heal. I'm curious to know if they will ever totally disappear.

Please continue to keep us in your prayers.

Love,
Lisa, Jeff, and Gracie

Day 3 - Another NO SPASMS Day!!!

Gracie had a four bottle night last night. She was up about every 2 hours needing to be fed. I was in disbelief and tried to not feed her right away -- that was a mistake. She would scream and bounce back and forth as if in agony. As soon as her bottle was in her mouth all was fine and once she drained every last drop and had a diaper change (can't be fed that many times a night without some diaper changes) she was ready to go right back to sleep.

Gracie's stomach felt better today and we saw lots of smiles this morning. We had a weight check and blood pressure check at the Clinic this morning. Gracie is now 33 lbs. and her blood pressure is actually getting lower instead of higher. No complaints there. Then we ran to Target to stock up on diapers (for more of those midnight changings). She enjoyed being out and about.

All afternoon and evening Gracie insisted upon being held and bounced...by mommy. Normally I wouldn't mind a bit, but my shoulders are starting to bother me...I think she is starting to get to the point where she is getting too heavy for me to carry constantly. Why didn't I lift weights when I was younger?

Gracie once again had a zero spasms day. We are thrilled and are anticipating good news with her EEG on Monday.

Love,
Lisa, Jeff, and Gracie

Another NO SPASMS Day!!! :)

Gracie had a little more restful night, although she was up every three hours for a bottle. She did sleep in until 8:00 a.m., what a treat! She had a good morning, although I'm finding the longer she is on Prednosolone, the more she doesn't want to do anything but be held. We try to get her to play and we can get her to do so for a little while if we are right there, but she doesn't initiate on her own. We did have a lot of smiles this morning.

Gracie was in dire need of new shoes. Her foot is so wide and she didn't have any that were wide enough, so we took her to have her foot measured today at Schmitt's Stride Rite. They know their shoes! We ended up getting her some extra wide tennis shoes in pink and blue. They are very cute and you can tell they are more comfortable for her. We also took her to the mall to get daddy some new shoes. She did quite good out and about, so we stopped at the food court and had some lunch. Unfortunately Gracie and mommy had tummy troubles after that. We came home and took a nap together. The rest of the day she just didn't feel well and insisted upon being held and bounced.

We are thrilled to report that we had a second day of ZERO spasms!!!

Have a good weekend.

Love,
Lisa, Jeff, and Gracie

Happy New Year

Gracie had a very restless night, she was up at 11:10 p.m., 1:30 a.m., 3:30 a.m. and 6:00 a.m. demanding to be fed. I was in disbelief, but walking with her and rocking just wouldn't calm her, she needed a bottle of milk. After her 6:00 a.m. feeding, she never did go back to sleep. On the positive side of things she had absolutely NO spasms today. Yes, today was the ZERO spasm day we had been praying for. How fitting that we started out 2009 in a positive way. Hopefully it is a sign of good things to come.

Gracie was a bit needy again today. Really didn't want to do too much playing or walking, wanted to be held and bounced most of the day. She did have smiles for us throughout the day. Auntie Sheila, Uncle Chris, and cousins Kayla and Jason spent the day with us and Gracie enjoyed the attention. She didn't wander too far from mom or dad, but did have smiles and laughs to share. A few screams as well, but they were few and far between.

Happy 2009 to all! May your 2009 be a healthy and happy one.

Love,
Lisa, Jeff, and Gracie