Thursday, December 26, 2013

We're so glad it's Christmas vacation!

"This old house... sure is lookin' good..."  Can't get enough of that movie!  And we are certainly glad it's Christmas vacation around here.  I know lots of parents loathe the dreaded "v" word, but when you participate in every aspect of your child attending school, it's a vacation for you too.

We have been keeping so busy this season, and I've been terrible with keeping the blog up.  Lucy's been continuing school via Skype...

In her pjs, of course.

...and had her first Christmas concert before the break!

Shakin' it to "Jingle Bells."

We've also been working on a lot of projects at home...

Pinterest is full of great inspirations, and we tried our hand at several popsicle stick ornaments this year.  Some days she was interested in the process, some days she just wanted to choose materials and ignore me while I did the work ;)

We've also managed a lot of snuggling and nap time - is there any activity better suited to winter?

Bert's really gotten the hang of snuggle time :)  And I think Lucy is finally letting go of the last vestiges of animosity over having to share attention; probably mostly because Bert is requiring far less attention these days.

We got lots of snow dumped on us just recently, so we took advantage and headed outside for some sled time.

And, of course, Christmas was full of relaxation and joy... and maybe a few presents :)  Matching jammies for Lucy and her newest favorite friend, and we were sent to enjoy hanging out at home for the day.

We have also had a surge of donations for Lucy's addition.  In this season of giving, people have really opened their hearts, and shown us that they are just as excited to get Lucy closer to her addition as we are.  And that makes me feel so incredibly blessed.  Not all of the events this season have been memorable in a good way.  Noah was sick for a week in early December, which meant that Lucy and I were isolated to her room.  Lucy is not at all a fan of her routine being disturbed, and on top of that, could not see her Daddy.  She was refusing to nap because we couldn't do our normal snuggle on the couch, and though she is older, she really needs a period of sleep, not just rest, in the afternoon, to keep her going strong.  She was getting crabby and starting to tantrum, and one night her secretions got the best of her, and she had a scary episode.  We managed to get her airway cleared before her numbers got too serious, but it was a definite reminder that Lucy just isn't as strong as she was when she was younger.  It's something we don't like to talk about, or think about, but it's there.  She tires more easily, and cannot recover herself as well as she once could.

Having this addition done this summer is imperative.  We spoke with our contractor last week, and got a rough estimate, since we weren't really sure we were aiming for the right number.  They confirmed that yes, it's going to cost around $90,000 to do the addition.  A daunting number for sure, but we are determined to make this work.

We added in all the amazing, generous donations from family, friends, and businesses recently, and our total in the addition account right now, after having spent the money to secure the extra lot, is $17,500.  So to date, we've actually raised close to $25k.

Realizing that, barring a miraculous lottery win or a celebrity adopting our fundraiser as their pet cause, we are not going to have the $90k raised by this spring.  What we are hoping for is to have at least $30,000 raised, and then to get bank approval to take a second mortgage out on our home for the rest.  We are praying that this extreme financial step is one that will be feasible for us, because we just can't keep hauling Lucy up and down, and she will not tolerate being isolated to her room.

So we ask you to pray.  Pray for generous hearts from people who can afford to give, and pray that we will be able to swing the difference on our own.  And share Lucy's donation page if you feel so inclined.  We are so grateful to you all for supporting us.  This is really going to change Lucy's life - she won't be isolated when a parent is sick; it will be the sick one who is isolated, and rightfully so.  She will have a bathtub that she can be safely lifted in and out of; one that she can stretch out in and wiggle, and not have to worry about running out of space.  She will have a shower with a safe chair, so that she can still be bathed on days when her secretions overcome her.  Her bedroom will look out onto our yard, where we are planning on Make-a-Wish building her a playset, and a flowerbed.  This will be a haven for Lucy; a place for her to grow and thrive and be taken care of.  And it will be because of the wonderful people that God has put in Lucy's life.

Thursday, November 21, 2013

Culver's Fundraiser Success!

Back in October, we had a night of fundraising at all three of our local Culver's locations.  For people who don't know what a Culver's is, they are the home of the Butterburger, delicious frozen custard, and the most amazing cheesecurds ever to grace this Earth.  No joke.

Rick and Pat Miller generously hooked us up with all three locations.  They promoted all over the place, got us radio spots, and set it up so that we could have family and friends help out at each location, bringing out food and answering questions from the customers.  They also allowed us to have donation cans out at each restaurant for the whole week.

We were told by the restaurant managers that it was their most successful fundraiser to date!  Lucy received a portion of sales, and the donations from the canisters, which ended up totaling a $2,200 donation!  What a blessing, and another step closer to Lucy's addition!

We are so grateful to Rick and Pat, the managers at each of the Culver's locations, and our wonderful friends and family, for volunteering and working together to make this fundraiser so successful!  We are so grateful, and we'll never be able to express just how much we appreciate this.

Our family with Rick Miller - and yes, our house is full-on Christmas.  Don't hate.

We are so happy that we are getting closer every day to Lucy's addition.  There are a couple of fundraisers going on right now, including a Partylite candle sale.  We are hoping to get another public fundraiser set up soon with another local restaurant, so stay tuned!  It is so amazing to open my email to find messages from people wanting to reach out and help us.

It's important that we stay on track with the fundraising, and in line with our hopes to start the addition late next spring.  Lucy is at an age where she is deciding she doesn't need naps in the afternoon anymore.  The problem with that is that her body still needs that rest.  She has been having some issues in the evening, when she starts to get tired, that make it hard for her to get her bath.  If she's too tired, she can't manage her secretions as easily, and it's more work for her to breathe.  She has had to have a few table baths, which are not ideal for her, and we've had to rush her to her room and her bipap on a few occasions as well.  We are looking forward to the day when we will have the option to do the bathtub when she can tolerate it, but have the choice of a shower with a supportive shower chair, for when she needs the extra help!

Thank you all, once again, for your prayers and support!  We will get there!

Wednesday, October 9, 2013

Field trip!

A couple of weeks ago, we were Skyping with Lucy's class, and the connection was awful.  Picture was blurry and choppy, sound was garbled, it kept freezing, and the call dropped about three times.

Lucy is not always on her best behavior for Skype class, but sometimes I cut her some slack - what 4-year-old would be completely attentive to something they can't consistently see or hear?  That day, though, she got quieter and quieter every time we got the call back, as if she thought perhaps if she was well-behaved, the screen would work.

That made me sad.  We do our best to make safe, yet fulfilling choices for Lucy's life, but it can be hard to be sure you're striking a happy balance.  Lucy is miserable when she is sick - worse than that even, she's terrified.  She wakes up choking in her sleep, and that scares her immensely.  So we do our best to avoid her being ill, and we all know that once school is back in session for the year, the germs are rampant.  Little ones are sent to school with symptoms, are contagious before anyone even knows they're ill, and let's face it - small children are not bastions of germ control.  If I had a dollar for every time I heard Lucy's teacher tell someone not to use their finger, to get a tissue, or to cough into their arm... I'd be able to fund Lucy's house addition! ;)

So home we stay, with our Skype connection that has fortunately vastly improved since the beginning of the year, and in-home therapies.  And Lucy usually seems quite pleased with that setup; she can get a bit annoyed when she's not doing something she completely loves, and tends to shut out the offending activity with squishing her eyes shut and loud hums.  For school, she's often chatty when she shouldn't be, but overall enjoys the songs and stories.  She fits right in with the rest of the characters in her class ;)

That day, when class was over, I had a nice chat with Lucy.  I really felt she was listening, which is hardly ever the case - usually she greets my sermons with the aforementioned squishing and humming.  Whether it was because she was tired or not, I took advantage of my seemingly captive audience, and we talked about why she isn't in the class with the rest of the kids, and when I asked her if she understood, she smiled.  I told her we were going to try to take her on a field trip with her class, and asked if she would like that, and she smiled.  I really felt, which is rare, that she listened and gave me honest feedback.


We got over our utter terror at taking Lucy out with a large group of children during a time when it's very probable one of them is ill, and I was making preparations to take her on her field trip.  A week beforehand, we heard that there had been a case of whooping cough identified in our district's high school.  Since we didn't hear anything locally beyond that one confirmed case, we decided to go ahead with plans for the trip to The Little Farmer, a local apple orchard and pumpkin farm.  They were set to learn about apple processing and the bees that they keep there.

The day before, I got an email from one of her teachers, saying that they had decided to cancel the class's field trip, due to various circumstances.  They planned instead to have a fun day on the lawn of their school - would Lucy like to come to that instead?  I said absolutely!  Cutting our travel time to minutes and shrinking Lucy's exposure by a hundred kids was something that was definitely palatable to me!

So we packed Lucy up today and headed to her school, to meet her class in person for the first time.  The kids were walking out to the lawn as we pulled in.  I was uncertain how it would unfold; last year, she had kids from her class not recognize her when they first met her in person, even after Skyping with her all year, because she was laying down, and it can be quite a bit to take in - seeing her with all of her machines on her chair can be a bit daunting for adults, much less children.

The kids had formed a circle for games when we started rolling Lucy up.  I heard her teacher remind them to keep a little distance from Lucy and to keep their hands to themselves.  One of them spotted Lucy and shouted that she was there, and it was all over.  I heard a teacher say "Keep in the circle!" as a few eager kids surged forward.  They were all so excited to meet her and say hi!  The teachers managed to wrangle the kids back, and Lucy got to be a part of her very first class photo.

They put her right in the center of things, which is where she likes to be.

She was really loving being surrounded by a bunch of her peers shrieking "Cheese!"  It was so wonderful to see them all jockeying to see her or be near her, or talk to her.

Lucy also got to be a part of an age-old rite of passage for childhood: the gym parachute.  I loved the parachute when I was in grade school, as I'm sure you did.  Somehow, I remember it being bigger... anyway, Lucy got to grab the first handle - what an honor!

A teacher warned me that the kids got a bit... boisterous... so Lucy settled for guiding 
my hand, so her arm wouldn't get ripped off

Whee!  She loved the parachute!  Since she's a fan of bouncing and spinning and
violent actions in general, I knew she would.

After the parachute, a few girls came up to say hi to Lucy, so we decided to do formal introductions for everyone.  The kids were so cute telling Lucy their name, and it was nice see the faces behind the voices that we hear on Skype.

Since everyone was as settled as 4-year-olds can be at that point, it was time for a story.  There was an old lady who swallowed a pie...

Lucy is not always attentive during storytime, and today there was 
some definite reprimanding.

After storytime, the kids packed up to head back inside.  Lucy got to be in the line.  I know this probably sounds like a ridiculous thing to be excited about, but it's picture-worthy in my book.

They were going to go right through the building, back outside to recess, and we were going to join them, but Lucy was looking a bit tired by that point, so we decided to call it a day and head home for naptime.  Everyone lined up for goodbyes - a familiar chorus we hear every day she does Skype with the class.  They really do love her being there; I was told that the kids were very excited about meeting her today, which made my heart swell with joy.

Now we just watch Lucy for the next week for any signs of illness.  There was some sneezing going on during class, but no one touched Lucy, and we were outdoors, so I'm hopeful that we'll be in the clear.  I feel so blessed that we had this somewhat safe setup for Lucy to meet everyone, and I know she enjoyed it too, although you can see by the last picture that the sun is in her face and she's ready for a nap.

Which she took promptly when we got home.

By no means am I ready to start hauling her into her classroom every day to lick table surfaces, but I'm glad that we took this little step to have her included in her class.  The kids already love her so much from seeing her on Skype, and I really feel like this cemented her as being a part of their class.  Yay for inclusion!

The next post will be when we get our numbers from the Culver's fundraiser we had last night for Lucy's addition!  From the sound of it, a very successful night!

Friday, September 6, 2013

Sesame Street Live, Take Two

In May, we took a trip with Lucy to Chicago - our main reason was to see the Sesame Street Live performance.  You can read all about how that went here.  Needless to say, not the bright spot we were hoping that seeing Sesame Street characters would be for her.

I found out that Sesame Street Live was going to be headed to La Crosse in August, with their brand-new show.  I wanted Lucy's experience with it to be so much more than what it had been, so I contacted the La Crosse Center, to see if they were wheelchair accessible, and if we could be seated in an area where Lucy would be able to see the stage.

I received a very nice reply back from Art Fahey, saying that they could accommodate her, and then corresponded with Nikki Kimpton, setting up ticket purchasing and arrangements.  We wanted Lucy to actually get to meet some of the characters this time, so we got the Sunny Seats package, and started to plan our little trip.

I was feeling a bit nervous; the trip to La Crosse was going to be a longer drive than the one to Chicago, but with a much less harried pace.  We were planning no other activities, and told no one about our trip beforehand.  We wanted it to be laid back and casual, and didn't want to tax Lucy too much.  Of course, then we discovered that the days we were meant to go, it was supposed to be insanely humid, with the heat index climbing to over 100 degrees.  We decided to book an extra night, and drive Lucy in the night before, to avoid the ridiculous temperatures.  Our van's AC isn't exactly frigid, and Lucy does not do well in the heat.  At all.

We made the drive uneventfully and settled in for the night.  The next day we took it easy in the hotel, and went out for a little dinner and ice cream.

Hmm, what flavor?

Went with chocolate peanut butter.  Good choice.

Then we headed back to get ready for the show at La Crosse Center, which was next door to our hotel.

Getting ready means nap, right?  I wish, Lucy... I wish.

The truck was parked right outside the venue, so we had to get some shots.

It was a surprise trip, so this was the big reveal :)

We're going to Sesame Street!

Had to get pictures with them all!

We got there a little early - the lobby was empty except for one other mother and her little boy, so we stood with them, in the designated "Sunny Seats" spot.  The boy was fascinated with Lucy :)  Suddenly, from behind us, someone asked "Is this Lucy?"  We turned around, and a man who worked at the Center was walking toward us.  He introduced himself as Rich, and said he would be taking care of everything for us that evening.  It was red carpet treatment for Lucy after that!  She was first through the door into the meet and greet room - 

Hi guys!

It's just not as fun when you're not looking at them.

... and first in line to meet Elmo and Ernie (Ernie is her current second favorite, so that was great!)

We let Ernie know that he ranked near the top, so he came over to express his gratitude.

This was his reaction when we told him he was one of Lucy's favorites.
These guys are in character and fully invested the whole time, it's great!

Admiring Lucy's bow.  She had a whole special outfit... but it was packed into a 
suitcase which Noah neglected to bring.  Poor guy took a lot of heat for that.  I'm
working on not sweating the small stuff ;)

Saying goodbye until later!

Rosita was also wandering around the meet and greet, presumably to keep the wee ones from ganging up and just rushing the wait line.

Lucy did some coloring, too!

She was very happy, and I think a bit star-struck, as we made our way into the theater.

We were escorted by Rich, who led us down to the front row, then rearranged chairs and took out chairs that they had killed to make sure that we had enough room for Lucy's stroller in the row.  After some shuffling, we were settled in!  We had to get Lucy a pendant, to go with the one from the last show.

We admired the stage and waited for the show to start.  Of course, there were small children hacking all around us, so we had to do our best to position Lucy away from them, while trying to refrain from shouting at their parents.  (Yep, that's right.  Get your kid to cover their mouth, or do it for them, if you're taking their germy butt out in public.)

The stage was so pretty!  And the show began.  It was the world premiere of their "Make a New Friend" show, so Lucy got to be one of the very first to see it.

Lucy was in awe :)

At intermission, we sat Lucy up to talk about what she thought of the show.

Giving Daddy a thank-you kiss :)

I think it's starting again!

Lucy was in the front row, so as the characters came off the stage, it was easy for them to go by and stop to say hello to Lucy.  She got to shake hands with Ernie again, along with Zoe, the Count, Bert, Telly, and Grover - I was nowhere near quick enough to get pictures of these, unfortunately!  No Cookie Monster, but that's okay, because he came to visit us at our house, thanks to a friend with connections ;) (This was affiliated more with the Ripon Cookie Daze, less with Sesame Street Live!)

The show was pretty spectacular, finishing up with a big elephant and lots of dancing from some incredibly talented performers.

Parents were overheard telling their kids to go up and maul the characters - to just
"push through" anyone in their way.  Not cool, parents.  The characters, however, 
were totally awesome and danced with the kids a little before breaking free.

Overall, a big success!  We got out without any hassle, went back and packed up the few things left in our room, and made the three hour drive home, arriving around midnight.  We were tired, but we wanted to avoid the heat again, and it's always nice to sleep in your own bed :)

I want to say a huge thank you to Art and Nikki and Rich, at La Crosse Center, for making this experience so wonderful!  Rich made sure that our every need for Lucy was taken care of once we arrived, and it was such a relief to have people who were willing to do anything to help.  We would visit that venue again in a heartbeat!