Saturday, February 28, 2009

Saturday Fever

It's mommy at the keyboard tonight - Gracie awoke bright and early at 4:30 a.m. - She must not have realized it was Saturday and we could sleep in. She was in a good mood, but very hyper, I could tell that something was not right in her world. She fell asleep about 7:30 a.m. and as I lay beside her I knew she was not feeling well. She felt very warm, she had the chills, and she was in constant motion. When she awoke we took her temp and it was 102.1, Tylenol helped but we couldn't get her fever all the way down and it kept spiking up, so we started alternating the Tylenol with Motrin. When the meds were fresh, we would see her fever dip down to 99.5, but it has stayed around 100 most of the day.

We aren't sure what is up with this fever, she doesn't have a runny nose or appear to be sick in any other way. She was even quite happy and when the fever would be lower she was a busy girl. She played with toys, did alot of walking around the house and even got to watch a little TV.

Gracie took a 2-1/2 hour nap this afternoon and although hasn't really wanted too much formula/milk today, she will take drinks of water, ate a good lunch and an okay dinner. Hasn't really wanted any snacks. So definitely a lighter appetite, but not worrisome.

She fell asleep in my arms just before 8 p.m. and is now snug in her bed. I think I may join her shortly. It could be a long night if we don't get that fever to break.

We hope you all are healthy and warm.

Lisa, Jeff, and Gracie

Friday, February 27, 2009

Jabbering Friday

Gracie awoke at 5:15 a.m. this morning and was in the best of moods from the moment she poked her head out of her room. She jabbered all morning as we got ready for work and daycare. She jabbered all the way to daycare. I heard lots of "hi" and "hey".

She had a good day at daycare and daddy picked her up around 4 p.m. He said she jabbered the whole way home. When I got home at 6 p.m. she was still in a great mood and ready for fun. She ate a good supper and when she was done eating her own, she started in on mommy's. We let her hold onto her container of apple-cherry sauce and she sucked it down right from the container. Gracie thought that was great fun and she was covered in it when she was done. We just took off her pants and shirt at the table.

After dinner we played for awhile with her toys and "hide and seek". She fell asleep in my arms when she was drinking her bottle. She is now snug in her bed.

Lisa, Jeff, and Gracie

Thursday, February 26, 2009

Tired Thursday

It's Mommy back at the keyboard again tonight. Gracie slept in this morning...til 5:30 a.m.!!!! She had a good night, but got very restless toward the early morning hours. She awoke in a good mood. She wasn't very hungry for breakfast, but is being very cooperative these days with taking her medicines. We are so thankful for this as we hated the struggle for that week or week and a half where she didn't want any part of her meds.

Gracie had a good day at daycare. She ate Cheerios with the other kids, took a morning nap, helped Michelle with dishes (earning her keep you know) and took an afternoon nap. Daddy picked Gracie up at daycare and when I called Jeff to let him know I was running late at work, she was snoozing on his shoulder.

After dinner Gracie went for a dip in the tub and that was enough to calm her for bedtime. She could hardly keep her eyes open when I put her pajamas on. She fell asleep in my arms drinking her nighttime bottle.

We hope all of you who are dealing with the icy/snowy winter weather stay warm and safe.

Lisa, Jeff, and Gracie

Wednesday, February 25, 2009

New Word Wednesday

Hello, it is dad's turn to write tonite. Grace had a good night, and woke up about 4:45 this morning - which was okay, because - working back on the early shift, I was already up, and Lisa would be be up in 15 minutes anyway.

Not much for breakfast or lunch today - but overall a good day at daycare. It would seem that Gracie has made a new friend. Ever since returning to daycare, Heidi (the official dog of daycare) has proclaimed herself as Gracie's guardian and the two are now inseparable - as you can see by this picture taken during nap-time.

Tonite was a physical therapy night. We have some new exercises to strengthen Grace's hip muscles and train her to sit in positions conducive to good posture. Our therapist was impressed with how motivated Grace was and how well she was picking up the new concepts.

We had a few new words today. One, when asked, "what does Heidi say" was, "arf". "Hi", "Hot" and "Hey" are becoming more pronounced and common as well. We also, sort of, say the name of our guardian, "Hi-duh" (Heidi).

Overall a good day.

Have a great day! If you are in Minnesota, be careful on the coming ice and snow storm!!

Jeff, Lisa, and Gracie

Tuesday, February 24, 2009


Mommy at the keyboard again. Gracie's day (and mine too) started at 4:00 a.m. Gracie decided she had slept long enough and that it was time to play. YAWN!!!! Thankfully she was content to play in her room so I could at least lay on her bed and pretend to sleep.

Gracie had a good day at daycare and even took a 2 hour nap today. I'm guessing that was much needed. I think she must have had a busy day as she was quite tired tonight. After her bath she fell asleep while I was putting her pajamas on and clipping her nails. I've been trying to get those nails clipped for 3 days now and she just won't cooperate. She awoke just enough to drink part of a bottle.

Gracie was smiley and happy tonight. She was very hungry for dinner and could hardly wait til we got it cooked. She kept going to the stove to check on the situation. She's a little too tall for her own good as she can touch the burners on the stove so we have to keep a very close eye on her.

A good day for all and we're all more than ready for bed.

God Bless You,
Lisa, Jeff, and Gracie

Monday, February 23, 2009

Monday - A Return to Daycare

It's mommy at the keyboard tonight. Gracie had a pretty good night and awoke bright and early at 5:15 a.m. ready to start the day. After a small breakfast (she's back to her pre-spasms tendency of not really wanting to eat much for breakfast) we got dressed and headed to daycare. At first Gracie was a little timid, but her daycare mom Barb, got down on the floor with her and coaxed her into wanting to stay. She took Michelle's hand and headed for the toys.

I picked Gracie up at noon and was happy to hear she had a good day playing with her friends and meeting some new friends. Heidi, the miniature dachshund at daycare, has appointed herself as Gracie's guardian. She senses there is something different about Gracie and sits next to her to watch over her. It amazes me how animals can sense these things. I've heard of seizure dogs that can warn their owners that a seizure is coming before it happens. Nice to know that Heidi and Gracie have a special bond.

Gracie had a PM&R appointment today and once again we've added another AWESOME physician to her medical team. Gracie will be getting orthotics to wear on her feet and ankles to try to correct the inversion of her step when she walks. Her physician also felt that it would benefit Gracie to work with occupational therapy on an every other week basis and to supplement her current physicial therapy by having her go every other week to the clinic for physical therapy. Her PM&R physician was very impressed with Gracie's flexibility and her motivation. She didn't stay still the whole visit. She had a room to explore.

Gracie was supposed to have physical therapy at home today, but was extremely overtired to the point of tears and tantrums. Daddy took her home for a nap, but it took a while to get her relaxed and calm enough to fall asleep. Once he did, it carried over into PT time. When I arrived home I found daddy and Gracie snuggled up on the couch sleeping. Gracie awoke in a horrible mood. Nothing was right. We calmly talked to her and snuggled her, then gave her dinner. The rest of the night she was in the best mood ever. Smiles and giggles and wanted to move and touch everything. She did lose her balance in the kitchen and fell backwards hitting her head on the floor. That caused some tears and I don't blame her. She hasn't done that in a long time and it sounded like it hurt. But after a little comforting she was ready for more playing.

Thanks to Barb and Michelle for easing Gracie back into the routine and giving her some extra tender loving care to make the transition back to daycare a positive one.

Gracie is now snuggled in bed and I'm not too far behind her.

Lisa, Jeff, and Gracie

Sunday, February 22, 2009

Sober Sunday

Gracie awoke bright and early again...5:30 a.m. She awoke in a good mood, but was pretty sober most of the day. We did have smiles, but we had to work pretty hard for them. I was told to watch for possible depression as we decrease the prednisolone and I wonder if perhaps there was a little of that going on today. She was so tired too. She took a half hour morning nap, less than an hour afternoon nap and then I coaxed her into taking a second afternoon nap that lasted about 45 minutes.

When I was home with Gracie in the days where she had to be held constantly, I would often put on her Wee Sing CD and we would sing and bounce to it. One of our favorites was "The Ants Go Marching". I haven't turned it on since that time. Today I was holding Gracie's hands and we were marching around the house and I was singing that song. She directed me to our under the counter CD player in the kitchen (which is where we would always play it) and stood there looking up at it waiting for the song. So I put on the CD and she quite enjoyed it. Our dishwasher is just under the CD player and she stood for 20 minutes holding onto the dishwasher and listening to music, just sucking her thumb.

Gracie's appetite continues to go down. Her messiness in eating remains! I'm now at the point where I pretty much change her clothes after lunch and dinner if we are having something really her favorite goulash. I would like to find some oversize bibs, but have yet to find them anywhere but a special needs online store...and they were just WAY too expensive. I'll continue to keep my eyes open.

Tomorrow Gracie goes to daycare in the morning and I will pick her up around noon as she has a PM&R appointment. Then daddy will take Gracie home and her physical therapist will work with her in the late afternoon. We'll have to figure out how to get a nap in there too.

The spasms continue to be gone, but I must admit I'm a nervous nellie. Anytime she makes the slightest jerking movement, I hold my breath in worry. I know God is in charge...I just have to remind myself of that...OFTEN! We appreciate any continued prayers for Gracie's continued well being.

All our love,
Lisa, Jeff, and Gracie

Saturday, February 21, 2009

Snowy Saturday

It's mommy at the keyboard tonight. Gracie had an extremely restless night, rolling back and forth, back and forth, crying out, then settling down as I would snuggle with her or pat her back. I think we were both happy when morning arrived. Gracie awoke happy and ready to welcome the day.

Gracie enjoyed looking out the deck door to see the snow. It was a fairly uneventful day, with Gracie and I playing and reading books while daddy had band practice. Gracie mimics the words "hi" and "hello" on occasion, well tonight we had a new one. I was cooking dinner and she wanted to see what was going on. I picked her up and told her the pan was "hot", to which she repeated it.

We put little piggytails in Gracie's hair this morning and she tolerated them well, but at lunch time she covered her hair in pasta sauce. We removed her from her high chair and put her straight into the bathtub. Which was great for Gracie -- she loves to go for a swim in the tubby.

Gracie and I had a battle of wills again tonight over the nightlight in her room. She looked to daddy for support when I said "no" and got the stone face of "no" from him too, She was relentless until I finally picked her up and moved her.

Gracie's appetite keeps decreasing and her tummy was a bit upset today. She also seemed a little more needy today, wanting to be held alot. I was only too happy to hold her and sing.

By the time 8 p.m. rolled around she was a tired girl and fell asleep in my arms drinking her bottle. I'm headed to bed pretty quick myself.

Stay warm.

Lisa, Jeff, and Gracie

Friday, February 20, 2009

"Four-Wheel" Friday

Today was a big day for us. Grace went to daycare for about 4 hours this morning just to ease her back into the routine. From what I am told, she had a very good time. She must've played awfully hard because her head started to dip when I put her in the car seat, and she was asleep before I got my seat belt buckled.

We had a real good afternoon. Grace took 2 naps (that would be counting the one that started in the van, and lasted for another 60 minutes). We played and sang quite a bit.

I can tell that Grace is going to be a tough girl. She has already proven this by her lack of crying, or even flinching, at her blood tests and how she handled the ACTH injections. But - now her latest thing is to crawl over dad when she needs to get something that is on the other side of him - or perhaps just to gnaw on the other side of his face. I call this "Four-Wheeling" because she truly just starts rolling over me like a monster truck, and then will just stop when she gets to what she wants -sometimes leaving her knee lodged in my throat or a finger in my nose.

Today was my last day of being a stay at home dad (boy, that month went fast!). All in all, I would say that it went pretty well. My hat is off to anyone who is a stay at home parent. I have never been busier in my life. Anyone who says that a stay at home parent doesn't work, or doesn't have a job is just cracked.

This means, of course, that I have to go back to work on Monday. I hope I can find my toothbrush.

Have a great weekend!

Jeff, Lisa, and Gracie

Thursday, February 19, 2009

Travelling Thursday

Another good day in the Duncan house. It was also another day of outings. Grace got to go down to Mayo again, as dad had a lunch get-together with some former teammates. So - Grace got to travel the halls of Mayo (making friends with everyone she saw) and then spend a little more than an hour helping out in mommy's office.

I am told that while there she typed a memo that was titled, gnupmfr that was regarding the aopzkmxeqs project. It must be in code, because I read it and I can't make heads nor tails of it.

Our day back at home was filled with fun and smiles again. Grace was awfully snuggly today too. She must have known that today was our last full day together -as she goes to daycare for a while tomorrow, just to get re-initiated to the whole idea.

We did alot of singing again today. It seems that it is Grace's favored method of going to sleep - especially at nap time. Over the past 18 months we have had a number of favorites. Our favorite these days is "I Saw the Light" mixed in with "I'll fly away" she just loves to bounce to those two songs (if you don't know them, just catch me someday and I'll sing them for you - I know them quite well by now).

It was a pretty good night. Bathtime was fun - but then Grace got tired very early tonite and was sleeping by 7:40. I wonder what time she will get up in the morning!

As always, thank you everyone for your prayers and kind wishes. Your support is what keeps us going.

Jeff, Lisa, and Gracie

Wednesday, February 18, 2009

What a Hoot Wednesday!

My girl woke up about 5:15 this morning. It was a great day from there on out.

We had a chest xray this morning, and then an appointment to see our Peds doctor after that. This was a follow-up for her pneumonia from about 4 weeks ago. Grace charmed everyone at the Clinic this morning. She was chatty and smiled at everyone. Even her doctor, who has known her since day 3, said, "Miss Grace, you're just a new woman!" I think she was glad to see that Grace was not as subdued as in weeks and months past.

The fun didn't end there. After returning home from the Clinic, she was still in such a good mood. I continue to see that my girlie has quite the sense of humor. She still loves to play tricks on dad and then laugh out loud about doing so. When she would get tired (after all of the trickery), she would snuggle in beside me and then look up with those little brown eyes with an expression as if to say, "You are my favorite dad in the whole world." She's so sweet (and biased).

I had to leave for a while this evening, but Lisa reports that Gracie was equally amusing throughout the night.

I have to go back to work next week, and it is with mixed emotions. While it is true that I look forward to getting back to work and running through Mayo's halls 100 mph like my hair's on fire, I will also miss the time that I have spent over the past 4 weeks. It has been educational and entertaining. It has really been a super time that I wouldn't trade for anything.

Anyway - off to bed I must go. So thus endeth the blog for this evening.

Have a super day!

Jeff, Lisa and Gracie

Tuesday, February 17, 2009

Tired Morning Tuesday

Hello. The famous (or infamous) daddy is back at the keyboard today (to be In-Famous is bigger than just plain "famous", right? (that one's just for you, Uncle Mitch!).

The day started off with a 5:00 wake up call. Not too bad when you consider some of the early days last week. The nice thing about the early morning wake ups is that there is usually a morning nap. Today's started about 7:50. Gracie then woke up about 8:20 or 8:30, so dad lay down beside her to see if she would relax a bit and snooze a little more. Well . . . WE woke up just before 10:00. I guess we both needed the extra Z's.

Grace had a great day. I think we can already tell the difference in the lower dosage of the Presnisolone (as in the every other day schedule). She was smiley and happy for much of the day. She is eager to go everywhere at one time. This can be a bit problematic at diaper time - otherwise it's pretty awesome!

Cooking supper was fun tonight. Grace wants to see and be a part of everything - meaning that she was not content to sit on the floor in the other room while dad was cooking. No - instead, I had to hold her in one arm, brown hamburger with the other hand, and use my body as a human shield to keep her away from the stove - all while standing back as far as I could, yet still being able to reach the frying pan. Oy Vay! We probably looked like a cartoon!

Grace was in a good mood most of the evening - having a great time in the tub, and then falling asleep on mommy while drinking the night-time bottle. It will be a sad day when we finally have to get her off of the evening bottle. It is such a relaxing and snuggly time (relaxing for both parent and child).

We continue to see physical and mental improvement in our girl. Can't wait to see her when she is medication free.

Thank you everyone, for your continued support and prayers. They are always welcome and appreciated. Also - if you know anyone who would benefit from reading this (their child going through similar situation, etc) please feel free to direct them to this site.

Have a great day.

Jeff, Lisa, and Gracie

Monday, February 16, 2009

Monday with Mommy AND Daddy

It's Monday and yes, it's still mommy on blog duty. I took the day off work to take care of a few business items that we weren't able to do on off work hours. I also got to spend some great playtime with Gracie.

Gracie awoke at about 3 a.m. and was quite irritable. She drank about an ounce of formula and decided she wasn't hungry, so we just bounced and sang and she quickly fell back to sleep and slept in until 6:30 a.m. That felt great. She awoke in a great mood and that mood stayed most of the day. She took an hour and 20 minute nap this morning and almost a 2 hour nap this afternoon, it would have been longer, but I had to wake her up to go to the clinic for a blood draw. The last we will have to do for hopefully a very long time. We have come to know the techs that draw her blood quite well and they treat her like she is a princess. Gracie loves to go see them. Tonight when we informed them that this was the last time they would see Gracie for hopefully a long time they all got excited and started cheering and Gracie got all excited too. It was so sweet. Gracie was a trooper for her blood draw, unfortunately the first stick didn't get results so they had to stick her twice. She didn't flinch either time. She just stuck her thumb in her mouth, had her blankie in hand and held mommy's hand. She had daddy close by and as she sucked her thumb, she offered him her little finger to suck.

We had three outings today and each time, I would take Gracie outside and let her walk down the driveway. She loved being out there and thought it was so neat that she got to get down and walk. The smile on her face the minute we walked outside was priceless -- it was ear to ear and then she would look at me to make sure I was enjoying the moment with her.

Now she is in bed, as snug as a bug in a rug. Sweet dreams. Tomorrow it is back to hanging out with daddy. Her early education teacher will be coming over tomorrow to work with her. I hope she is full of smiles for her. She is getting so good at following directions -- press that button, let's go to Gracie's room, etc.

Love to all,
Lisa, Jeff, and Gracie

Sunday, February 15, 2009

Stir Crazy Sunday

Gracie slept the night through and awoke at 5:30 a.m., although she had some very restless early morning hours of tossing and turning. She was much more needy, restless, and just wasn't as happy this morning. Gracie and I took a 45 minute nap at 8:00 a.m. and she awoke still not in the greatest of moods. She acted very tired and irritable. At 10:30 a.m., we layed down for a second morning nap and slept until 11:50 a.m. She was in a little better mood after that and ate a good lunch. She was playful this afternoon, but still just wasn't her happy self of late.

Jeff and I needed to run a few errands, so we decided to get Gracie out of the house to see if that would lighten her mood. She threw a tantrum when we put her shoes and coat on. I walked out the door with her and as soon as the cool winter air hit her cheeks, her mood lifted. She had the biggest smile. As I went to van, I whispered "hi" to her and plain as day, she said "hi" right back to me. Hasn't said it since, but she said it.

Gracie did great in her stroller at Sam's club as long as we were moving, then we headed to Target and same story, if we were moving we were fine. She was in a MUCH better mood once we got home. I think she was going stir crazy. Since I am so happy being a home body, I sometimes forget that dear sweet Gracie is a very social person and NEEDS to get out on occasion. It's hard to want to take her out with all the colds and flu's out there.

Our little fish had a great time in the bathtub tonight. We give her baths in the downstairs bathroom as it has an overhead heater. She gets so excited when she goes into that bathroom and knows it is bathtime. Sometimes she tries to convince us it's bathtime, even when it isn't.

Gracie is walking more and does so much better at it when she is wearing her shoes. They seem to stabilize her more than barefeet. It will be interesting to see what happens when she gets the braces on her feet. I'm guessing that will be a month or more out.

Tomorrow we begin alternating her prednisolone - none tomorrow, a regular dose the next day, none the next day, etc. Then the following week we lower the dose on the day she has to take it and will continue to lower the dose each week. She only has one more month of it. Her appetite is noticeably going down. We hope her weight will start decreasing soon too. She has gained 10 pounds since November 12th -- mostly in her tummy and her cheeks. She is in the largest size diaper that they make -- size 7.

Wishing you all a great President's Day and a great week.

Lisa, Jeff, and Gracie

Saturday, February 14, 2009

Happy Valentine's Day

Mommy is on blog duty today. Gracie was very restless from 2:00 a.m. on. She was up for about 45 minutes at 3:45 a.m., she finally fell back to sleep and then was up again at 5:45 a.m. I thought perhaps she was hungry but only drank about 2 ounces of formula. We all got up and played and ate breakfast and then Gracie gave Mommy and Daddy the best Valentine's present EVER. All three of us layed down on Gracie's big girl mattress for a nap at 8:30 a.m. and we all slept peacefully until 11:10 a.m. It felt GREAT! Gracie awoke in the best mood and was full of snuggles for mommy and daddy.

Gracie had a great day. She even took another 40 minute nap this afternoon, just enough time that I had time to prepare a nice Valentine's dinner for the three of us. Daddy came home from band practice just in time for us to eat dinner as a family.

Gracie's wonderful mood continued into the evening. She was very playful and full of smiles and giggles. She has such a sparkle in her eye when she smiles, it just lights up her whole face and makes mommy and daddy both melt.

On this Valentine's Day we are so thankful for health...and the love of all those around us. We send all of you our love and we hope you had a special day.

Lisa, Jeff, and Gracie

Friday, February 13, 2009

Fun Friday

As you read last night, we had company and I didn't get to bed until about 12:50 a.m. This, of course, would be the night that Grace decided to get up at about 1:45 a.m. Lisa walked with her until about 2:30. That's when Grace came walking into our room and said, "hey dad, it's your turn now!" We walked the floor until almost 3:30 - and then slept until 5:25. Boy, was I dragging today!

I thought that perhaps I could take a nap when Gracie did - yes, all 35 minutes of it this morning. Oy vay!

Despite my complaining (and if it's so bad, why am I still up at 10:30 this evening?) - we had a really good day. Grace learned a new trick today. It's the old, "get dad to come close and pull him to the floor by his lip" trick. It's amazing how you can lead someone simply by grabbing their lip. I need to remember that one for later (perhaps when she's 16 and brings home a date - hmm).

We made a trip to the store today, and Gracie, in her usual fashion, made friends with everyone she saw.

Again, Grace amazes me with her level of comprehension. Even though she has been able to vocalize very little - she proves that she can understand a great deal - and also uses her own method of communication to get across her point (sometimes quite loudly!).

To sum up - it was another fun and "proud dad" day.

Gotta get to bed. I imagine I'll be walking again tonite.

Have a great Valentine's Day. Look for Lisa to be writing over the weekend.

Until Monday.

Jeff, Lisa, and Gracie

early-late Thursday

This is going to be a short one tonite. It is now 12:40 a.m. My cousin, Brad, stopped over and just left now. We had a lot of catching up to do.

So - in short - Gracie continues her nightly roaming of the halls. This morning from 3:30 - 4:30. After that, we fell back to sleep until 6:45.

Grace had a good day. Lots of giggling and fun.

Sorry, but now my brain is mush - so have to get to bed. She'll be getting up in 3 hours and I am the designated girl-walker.

Wish me luck!

Jeff, Lisa, and Gracie

Wednesday, February 11, 2009

Stuffy Wednesday

The day started off with a stuffed up nose and a fever. I am glad to say that both of them cleared up! Well, actually the fever cleared in the morning. The nose would only clear with the help of a Kleenex - and then only partially.

Grace was up at 4:00 this morning walking the floor again, refusing to sleep. She kept muttering something about not being able to breath. We tried our trusty couch, but still couldn't get comfy. Finally about 5:00, we both fell asleep on the floor of the living room. We stayed there until dad felt a tap tap & Lisa saying, "it's 6:45, get up." Getting up at 6:45 is perfect. That allows me to get in the shower & if I go quickly, I can catch the opening theme song to Arthur. I just love that tune!

Today was filled with smiles and nose blowing (there was no smiling during the nose blowing though, Grace really does NOT enjoy that part of the day). We also walked alot, with a look saying, "look at me, I am a big girl" (that would be Grace saying that, of course - I haven't said, "look at me, I'm a big girl" in years).

We also played "Where's Gracie" for quite a while today. She so enjoys that game, I think even more than when she "invented" it. Now when she plays it is an all out belly laugh when the game gets in full swing. You may be wondering why I say she "invented" the game of "Where's Gracie". It is because she started it on her own, we did not teach it to her - so as far as she is concerned, she created that game all on her own. When she is older I will break the news that "Peek-a-boo" has actually been around for thousands of years.

The highlight of the day was when the Fed Ex man came delivering our new Tupperware Sippy Cups! Woo Hoo!! How fun to get a package delivered to the door. We can't wait until our cold is gone so we can get out again (can you tell?)!

Well, off to bed. Reveille has been between 4:00 & 5:00 for the past few days, so no reason to expect it to be different on Thursday morning.

Thank you again for your continued support.

Jeff, Lisa, and Gracie

Tuesday, February 10, 2009

Therapy Tuesday

I know, the first question is "what time did Grace get you up today?" - the answer is 4:50 a.m. - thank you.

Grace has developed a cold. So, with her compromised immune system, we were off to the Dr's office to be sure that it was not turning into pneumonia, or anything else.

Since our primary doctor was not available today, we had a very nice substitute doctor (do you call doctors "substitutes?" - "Stand-ins?" - "filler-inners?" - "different person with a stethoscope?" What is the proper term?). She was one of the few people, if not the only person, on Baldwin 3 that we had not previously met (and I thought we had met EVERYONE there). She gave Gracie a "you have a cold, but otherwise fine" bill of health.

Grace had both a morning and afternoon nap today. She had a longer afternoon nap than usual. I thought it might be a long one when we were getting ready and her head went *clunk* on my shoulder before my first song was done - which was a bummer, as I love to sing.

4:00 was physcial therapy time. While our therapist was pleased with how well Grace is doing, she was concerned about Grace's foot posture when standing or walking. It looks like we will be getting foot braces. She showed me the model that she is recommending. They are . .(pause, wait for it) . . pink! No Problem!

We will, more than likely, have to go to Mayo's Physical Medicine dept to get the process completed. On the upside, Grace hasn't met everyone in the Clinic yet - so this will get us a little closer to our goal!

That's about it for today. Have to be off. Have a load of pink in the dryer (no, none are mine) and then off to bed.

Be well, be safe, behave.

Jeff, Lisa, and Gracie

Monday, February 9, 2009

Early Monday

Our day started out at 4:00 a.m. again this morning. Gracie was intent on walking the floor for about 30 minutes - too tired and restless to sleep. We finally managed to settle on the couch and she fell asleep from about 4:30 - 6:45.

Grace was running a bit of a temp this morning, but we managed to get that down by lunch time. It would also appear that our girl has caught another cold. We will have to keep a close eye on it, as her immune system is still compromised. I certainly hope a trip back to the hospital is not on the docket.

She was quite restless early on and it looked like morning nap wasn't going to happen. Again, our faithful couch to the rescue. We had a bottle of moo-juice and she was asleep before it was completed. We slept for about 45 minutes (yeah, "we". Dad was tired too).

The afternoon was pretty good. Grace had enough energy to play, walk the entire length of the house, and even play a joke on dad. We were sitting on the floor together and suddenly she leaned on me like she lost her balance. I eased her down to the floor and asked, "Gracie, are you okay?" - She just smiled and laughed. "Odd that she would giggle about losing her balance," I thought. Then she did it again and it quickly became apparent that she thought this was a riot. She was just messing with dear old dad! I love her sense of humor.

Anyway, off to bed! I expect to be walking the hallways again at 4:30 a.m. - so better get some rest now.

Thank you for your continued prayers and thoughts.

Have a great day - and get plenty of sleep (if you have any extra, send it to our house)!

Jeff, Lisa, and Gracie

Sunday, February 8, 2009

Substitute Sunday

Hello, this is dad, filling in for mom tonite as Lisa had to be gone this evening. Since I am a guest writer this time, I will try to write in the style of Lisa. So - I will try to refrain from the bad jokes and rambling (however, you can expect that again on Monday, my normal day - oops, there I go rambling already!).

Today was a pretty good day for Gracie. We went to church and then home for lunch. She got to play with both mom and dad for most of the afternoon.

Gracie had a bit of rumbling in her chest today & we thought, "uh oh - here we go to the ER again." After a brief coughing spurt - the rumble was gone (we'll spare you the gross details) - and no trip to the ER was needed.

Grace was awfully tired today (that might be because she was up from 3:30 - 5:15 this morning traipsing around the house (you know, my folks used the word "traipsing" when I was young - I never knew what it meant until now - oh, there I go rambling again)). Another factor may be just because she hasn't really been 100% since the bout with pneumonia. She went to bed around 8:10 tonite and fell fast asleep.

I will be heading that way soon too. Lisa is now home, so the whole fam is back in the house - so will close and be off to bed.

Have a great day or evening - depending on when you read this.

Lisa (played by Jeff this evening), Jeff, and Gracie

Saturday, February 7, 2009

Sunny Saturday

It's mommy back at the blog. Gracie awoke for one bottle at midnight and then was up at 5:30 a.m. to start the day. Obviously she didn't realize it was Saturday and we could sleep in. I tried to remind her of this, but it was too late, her eyes were wide open.

Gracie and daddy hung out this morning while mommy went to a much needed hair appointment and did a little shopping -- diapers, formula, and some bigger clothes. Yes, Gracie's 4T tops are getting small on her. She is now 36 pounds and 35 inches tall.

This afternoon it was quite nice out and in the mid-30's so we bundled Gracie up and took her for a stroller ride. She was smiles the whole time. Other than that we just played all day. Gracie did a little walking around the house and we encourage that as much as possible. Naps were short today, but we got three of them in. Smiles were in abundance today. Gracie also likes to sit on mommy's lap and have me hug her, and I guess I must not be squeezing tight enough, because now she grabs my hands and pushes them even tighter around her, it is so sweet. She also continues to be quite a tease. She loves to ignore me at times, and when I ask her if she is ignoring mommy she gets this impish grin.

Bathtime was lots of fun again tonight. She splashes, she laughs, she insists upon every bath toy being afloat and then she splashes some more.

Lisa, Jeff, and Gracie

Friday, February 6, 2009

Un-Freezing Friday

Today was an interesting day. To give you a little bit of background - a few years ago I was hit with an episode of Costochondritis. It is an inflammation of the cartilage where the ribs meet the sternum. It hurts like a bear, but is non-life threatening, mostly just a nuisance. It will return in minor spurts from time to time, but nothing serious - until today.

About 7:45 this morning, Mr. Costochondritis made a housecall. Not to be a whiner, but it hurt so bad - this was my worst case ever (seriously). I was fine as long as I would stand straight up, but as soon as I would bend - ooh, ow!! Do you have any idea how hard it is to change a diaper without bending over? Couple that with the fact that Gracie is becoming more headstrong every day, and not always wanting to lay still for diaper changes and you have the makings of The Great Diaper Debacle - not to be confused with Monday's Great Diaper Dilemma.

Overall the day was good. Gracie took 3 naps, if you can call them that; about 45 minutes in the morning, 35 minutes in the afternoon, and then another 5 minuter just before mommy got home.

The temp got to 39 today on our home thermometer (as you are reading this, I don't know where you are from, but here in MN, 39 in February is a BIG deal!) - so we went out for a stroller ride. Grace had a great time taking in the fresh air and "four-wheeling" over the patches of unshovelled sidewalk being tossed to and fro. There is a hill near us, that I would run down (with stroller) during the summer months. Every time we would come to the hill, Grace would begin to get excited. Since we haven't been out in a few months, I wasn't sure if she would remember the hill or not. Well - she remembered! As soon as we got to the top of it, I said, "Grace, are you ready" and she was all smiles with her legs kicking like mad. The second time down the hill (we always run down, then run back up and down again) - she was so excited I thought she was going to throw herself out of the stroller. She was a VERY happy girl.

Other than that, pretty much the same as usual. She continues to make strides that show her physical abilities, as well as her comprehension are returning - slowly but surely. I can't wait to see what tomorrow brings.

Speaking of tomorrow - the famed Mommy will be regaling you for the next two days, while I am away on dad sabbatical (would that be called a Sadadical?).

Have a great weekend.

Love to all,
Jeff, Lisa, and Gracie

Thursday, February 5, 2009

Giggling Thursday

The day started off at 5:30 again. Lisa got up and said, "Grace is restless, try snuggling her." Well, despite my best efforts, dad does not snuggle like mom, and so Grace was awake and restless. Since doing things the "mommy way" doesn't always work for dads, I decided to try the "daddy way" - I offered her $10 to go back to sleep. Okay, but really - I picked her up and went to the couch where we sat down together and soon both of us fell fast asleep until Lisa woke me up at 6:45. I don't care what anyone tells you - lying on the couch with a girly on your lap is a special time. I expect that I will miss it when she is too old to do so.

The rest of the day was filled with naps, lunch, spilling on our clothes, changing clothes and spilling again. We also played some games, walked around a little bit - and today - through my foolish antics, I created a great giggling monster. Grace just giggled and giggled for about 10 minutes - which, of course, caused me to giggle - which, in turn, caused her to giggle more. Oh, my stomach hurt at the end of our giggling session.

We went to Baldwin for a blood test again today. Grace is so used to the tests that she knows right where to go, and walks right up to greet the receptionist. Of course all of the techs there know her and say, "Hi Gracie! How are you today?" It is nice that she does not hold a grudge against them, as it is the same people sticking her each time. Instead she just gives a big smile. Grace made us proud (again) during her blood draw. Lisa and I always tell her, "you can be tough if you want to, but if you want to cry - go right ahead, its okay." Today again - she did not even flinch as the needle went into her arm. My girl is a toughie!!

Well - I will be getting up at 5:30 again on Friday morning - and if you read yesterday's entry, you know that 5:30 comes the same time every day . . . EARLY!

So - must be off to bed.

Have a great day / upcoming weekend. Thank you for all of your support, prayer, and encouragement.

Jeff, Lisa, and Gracie

Wednesday, February 4, 2009

Walking Wednesday

What a day! (CAUTION! Proud dad moment approaching) Yesterday I mentioned that we would try for 10 consecutive steps today. Well, Gracie walked the whole length of the house today, all on her own! (END CAUTION)

Last night was a 1 bottle night, so not too bad. Grace was in a good mood for most of the day. The only "issue" was when we had to get ready to go downtown for an appointment. For some reason she hates getting ready to go somewhere. Maybe it's the being man-handled (or would it be mom-handled and dad-handled?) when she was perfectly content playing. Maybe it's just that big burly coat. I know a few adults who get cranky when they have to go out in sub-zero weather, too. She did real well at the appointment, though.

We had a good time today. We read, walked, played "chase" and had a real good time playing "where's Gracie" (her version of peek-a-boo). I think this was our lowest "hold me" count to date. Grace would frequently make it clear that she would rather be on the floor playing than be carried around today. She was this way prior to getting on all of the meds, so this is another indicator that she is getting back to her old self again (let me know when you get tired of me saying that).

Well, it's off to bed. The morning comes early - actually, why do people say that? Morning comes at the same time every day. Well, whatever. . .

Have a great day. Thanks for reading.

Jeff, Lisa, and Gracie

Tuesday, February 3, 2009

No Bottle Tuesday

Today was an early day again (however, it was a NO-BOTTLE night!!). I was greeted by a smiley little girl at 5:30 this morning. We had a descent breakfast, an early nap and then tons o' fun in the morning. We even made a trip to the post office to mail a package to Grandma and Grandpa Duncan. Grace was so well behaved, other parents said to their kids, "Why can't you be more like that little girl." Of course, this sent Grace over the edge, and she shouted, "I am a BIG GIRL!!!"

Okay - seriously, she behaved very well at the post office and dad was a proud guy.

Again we played lots of games and worked on walking today. If you have had a chance to catch some previous posts, you remember that Grace has had trouble walking since our pneumonia episode. We have had to relearn (or re-get confidence) to do so. She was more brave (or "more braver" for those of you in Arkansas) today and set out on her own a few times - taking 6 or 7 steps from one object to another. Tomorrow we will shoot for ten steps at once.

Grace is also doing better in some other games and activities. I feel that I have really seen her make progress over the past few days. Honestly, they are simple things, like raising your hands on cue, waving "bye bye", turning the pages, or even sitting for books again - but for us they are such large victories to see that she is back on track and making headway.

Today's big deal, along with playing chase, was to use dad as a "Jungle Jeff". Grace and I would be lying beside each other on the floor. She would then decide to use me as a prop to move herself into a kneeling or standing position and then proceed to push me over (she is strong). Once I was on my back, she would then crawl over me as if I were some sort of obstacle course. Oh, the abuse I take (poor me)!

Overall, today was a very good day. I think it must've been a full day for Grace, as she fell asleep in Mommy's lap on the couch. She's so cute (yeah, I know - but I can't help it, I'm the dad. It's what I do).

Thank you again for your prayers, kind comments and overall support.

Jeff, Lisa, and Gracie

Monday, February 2, 2009

Monday Funday

It's Monday - and "Jeff the Dad" is back at the keyboard.

Gracie had a pretty good night. I thought she would be more wound up after all of the excitement of Sunday's game. She was a little sad that her Cardinals lost (she's attracted to those red uniforms). It was only a 1 bottle night for her.

Monday was full of fun and smiles. With the reduction of her meds, Gracie suddenly has to be everywhere at once. This only really creates a problem at diaper changing time. I want Grace to be at point "A" - and she wants to be at points "B,C,D & E" (usually at the same time). You can see how this would be a problem when she decides to move, just as the little diaper Velcro becomes detached. Aside from the Great Diaper Dilemma (as it will someday come to be known as) - her renewed curiosity is a real treat and a great change from what we have had during our heaviest medication times.

Grace had a good time playing tricks on dad. She has learned that during the game of "chase" (and she is the chaser), when dad zooms around the kitchen island - rather that follow, it is advantageous to take the shortcut and head him off at the proverbial pass. I was SO busted - and I laughed my head off. She was proud of herself too.

After having only an hour and a half of naps today, one would think she would've been ready for bed at or before the normal bed-time. Considering that she had been nearly asleep on my lap earlier, putting her to sleep should've been a snap. Unfortunately for mommy (who is on night-sleep detail) this was not the case. I think it was the, "Gracie, it's time for sleep, you come back here!" echoing from the other room that tipped me off to the impending problem. A few minutes later, a wide awake, smiley girl crawled up to me and said, "Dad, what's up?". 30 minutes later, she was still going strong- but now. . . finally asleep. Which is where I am about to go also.

Have a great day everyone.

All the best to you, and may life treat you kindly.

Jeff, Lisa, and Gracie

Sunday, February 1, 2009

SuperBowl Sunday

Gracie had yet another restless 2 bottle night. She awoke at 6:15 a.m. and was ready to start the day. We all went to church together -- this is the first time we've attempted that since she's been so heavily medicated. Well, not only was she not in the mood to sit or stay in one place, the baby in front of us was super sick, coughing, sneezing, runny nose. I was super paranoid that Gracie would catch the bug and it could be much more serious for her. We didn't make it through the full service.

We came home for lunch and a nap and then headed to Auntie Sheila, Uncle Chris, and cousins Kayla and Jason's house to watch the SuperBowl and eat yummy food. Gracie did well and was happy to have a change of scenery. She was showered with attention and we saw her walk on her own for the first time in two weeks. She motored around and had fun chasing Jason and snuggling with Kayla. She even waved bye, bye for only the second time ever.

It was good to get out of the house and have some fun.

Lisa, Jeff, and Gracie