Hot and Sweaty Memorial Day Bliss

Memorial Day turned out differently than originally planned. We stayed put her in Indiana rather than heading to PA. Would have loved to visit the cemetery and Mom's newly found bench just a few feet away from Daddy's grave and to see the lovely geraniums she planted.

Instead we sweat it out here in Kokomo! It was a HOT one! I stuck to the cool house for most of the morning. Carli was at her friend Katie's house all morning, so Glen took Olivia on an hour+ bike ride. I finished up a sermon file, "putzed," as Mom would say, and continued to research 2011/2012 school year. Love nice long lazy holidays!

Olivia and Carli were in begging-to-help mode, so I taught them (again) how to peel potatoes for our potato salad, and Carli set the picnic table on the deck. She chose a red table cloth and cut strips of paper to write place cards, held down by pebbles. :) Madeline wheeled around the kitchen, keeping me company while I put our simple meal together.

I think the girls were in their swimsuits all afternoon (Olivia for most of the morning, too). I pulled out sundresses for when our company arrived for a tad more sophistication.

Trying to tell Mommy something by mouthing it!

Glen's burgers were juicy and delicious, and if I could remember what brand of baked beans we bought, I would freely tell you which ones NOT to buy. Mealy beans anyone? Definitely should have tasted them first. Potato salad and chip dip and Mom's made-from-scratch brownies and raspberry tea were fantastic, though.

So fun to have friends to spend the holiday with. Danny, Lisa, Emily, and Cameron...glad you're in our lives!

The one and only picture I have of the Bryants yesterday. Ooops.

Clean again!

Very tired bedtime prayers.

Plans for Madeline

Last week, I attended my first-ever case conference and helped write Madeline's first IEP (Independent Education Plan). Madeline will be in an integrated (typical/special needs) preschool setting at a terrific school here in town. This is how she will receive most of her therapies since she will be aging out of First Steps in July.

Here are my remarks of that day, posted to Facebook:

Have to admit, all the paperwork, all the therapists, school reps, liaison, all the compliments about my little girl, all the clinical numbers showing lower numbers than I'd like, all the recommendations, and just the fact that we were writing an IEP...It was all a tad (or more) overwhelming today. It's amazing to know your child insi...de and out and still have to listen to someone read through the list of what she can or can't do. Everyone was so sweet. Nobody loves her and knows her like I do, and no numbers or checkmarks or Xs will ever paint the beautiful picture that is Madeline.

If you want specifics for prayer, please intercede for us on behalf of Madeline's speech. She signs a lot, but we need her to do more than label items. Cognitively, I think she's not as far behind as what her speech would indicate, but overall, being non-verbal is slowing her down across the board. She signs, mouths some words, but only babbles a little. Her neurodevelopmentalist has given us a referral for a communications evaluation to see about getting a communication board of some sort. This could be a vital tool to coax it out of her!

I'd love to see her take off soon so that we can see where she's at in that little mind of hers! This preschool experience will give me a chance to gauge whether or not I will have the ability to school her at home once she's ready for Kindergarten, a couple years away, thankfully.

Lazy Days of Summer with an Easter flashback

Since I never posted Easter pics, this is just for you!

I'm enjoying my cool house on one hot Memorial Day. This past Tuesday we officially finished school for the 2010/2011 school year, and we've revelled in our new-found freedom of summer. Still a little crazy with therapy, meeting with the school (more on that in a bit), and company, but the pace is a bit slower.

Olivia's closing program at preschool was bittersweet. I've seen her grow and change and start to say her "th" sound, which she likes to practice on me every once in a while, exaggeratedly sticking her tongue out to get it right. Her teachers declared her a delight, always quick to obey, and kind to others. Kindergarten, slow and gentle, awaits around the corner, and since she's been begging me to teach her to read, I'm sure that will be a priority for the coming year.

Second grade for Carli took us on a tour of the United States and some of her history, filled two notebooks on our first ever notebooking experience, delighted us with hands-on science activities, and started us down the path of nature study (though we want to indulge in this more consistently this summer and through the years ahead). Even though Carli is sure that she "hates math," she has done a terrific job, and this year she discovered a love for chapter books with bookmarks. The "code" is finally embedding itself in her little brain which makes the "work" of reading much more enjoyable. We did not do as much handwriting practice or art as we should have, but we loved the book basket full of living books and our study of Tchaikovsky's The Nutcracker, Swan Lake, and Sleeping Beauty.

Carli has fully arrived at the questions stage. She could sit for long periods of time asking endless questions, especially if it will keep her from a math worksheet, eating something she's not fond of, or settling down for sleep. Right now she's concerned for poor old Satan. She doesn't understand why he can't just say he's sorry and go to heaven. When asked not too long ago what question she would like to ask Jesus the most, she said, "I'd ask if He would please just forgive Satan so he wouldn't have to go to hell." Okay then.

Three of Madeline's therapists have flown the coop, so to speak, one to a maternity leave, and two because of changes with First Steps that necessitate us choosing from agencies rather than independent therapists. We MISS them! They are like family after three years of working closely with them every week. Our two new therapists are lovely ladies, and we will be sad to see them go in July when Maddy ages out of First Steps.

Last week, I performed the dreaded deed of attending the first case conference with the school system. (More on that in another post). She continues to astound us with her wheeling abilities. She loves the big open areas at church, especially where she can practice circles and steering toward whichever person she most wants to bless with a hug. Due to some job uncertainties, we're praying her new wheelchair will be approved before insurance becomes an issue. The demo chair is still in our possession and I'm NOT calling her rep back to see when he's going to reclaim it! :) He's fully aware of the lapsed pick-up date...I heard through the grapevine that he just may be engineering it so we can have it as long as possible, since he's so amazed at how well she's doing!

I'm not quite ready to unveil 2011/2012 plans for Carli and Olivia. I have been research mode (one of my most favorite times of the year), and I have about 95% of my mind made up on a big leap. Still praying much for wisdom, so much so that sometimes my mind will not shut down at night and I lie awake too long pondering the possibilities. Exciting stuff, but besides actual curriculum, I have a big reading list of my own to get through so that I can successfully carry out this style of education I wholeheartedly believe in. More on that in another post, when I actually have all plans a go.

This is a weekend for company! We were blessed to have Mom and Dad Asbury, Emeline and Lorraine (Glen's younger siblings and aunties to our three girlies), and Carli's friend Katie over for Sunday ham dinner. Mmmm. (The ham gravy and pineapple sauce were divine!). Last night, Kirsten and Caitie, dear claimed sisters of mine, and The Boy (Andrew) visited for lots of homemade pizza and laughter and getting acquainted with said Boy. (Nana Di, I have to tell you that he sat and played gently with Madeline, oohed and ahhed over her x-ray pics, and listened with earnest attention to Olivia's performances, so I'm thinking we can put a big A in the "interaction with children" column.) Today we're happy to relax with the Bryants around our grill.

We were supposed to be in Pennsylvania visiting my lovely mother for the weekend and beyond a few days to see Jordan's family, too, but due to the job situation briefly mentioned above, we thought it best to stay put for the time being until we know the next step in the journey. We're disappointed, but thankful for friends and family to fill our days so we don't sit around and mope about Jordan having all the fun! :) By the way, Jordan, I don't want to hear even one comment about Gibbles Fire Chips or Tom's Pizza. That would just be mean. Humph.

I trust you all a meaningful Memorial Day.

Olivia about to take off on a bike ride with Daddy.

Must have been fun...they were gone for more than an hour!

Letter to the President

Today we finished out our history lessons by putting our current President's picture on our timeline. When I told Carli that even though we may not like him or agree with him very much, we still need to pray for him, she told me, "I don't want to pray for him. When I see his picture it makes me sick in my stomach." [One of the little boys in her Kindergarten class (2 years ago) told her that he kills babies, so she's not been really fond of him since. We had to explain a little more than we intended to at her tender age of 5.] Our last assignment in history was to write a letter to him. Here is what she dictated to me (she'll copy it to writing paper):

Carli Asbury
xxxxxxxxxxxxxxxxx
xxxxxxxxxxxxxxxxx

President Barack Obama
1600 Pennsylvania Avenue NW
Washington, DC 20500

Dear Mr. President,

My name is Carli. I am a homeschooled little girl. I am 7 years old, and I'm almost 8. I'm just writing to say I'm going to pray for you. I'm praying to God to give you wisdom.

Would you like to write back to me?

Sincerely,

Carli

Wheels!

Just in case you missed it on Facebook...

Madeline's wheelchair rep brought her a demo wheelchair about 10 days ago. This video was taken within five minutes of the rep's departure. Her smile says it all! Watch her mouth...she's "counting" with me!

Oral Narration on Abraham Lincoln

Would you like to "hear" one of Carli's oral narrations for history? She's doing a pretty good job considering this is our first year doing Charlotte Mason style. We continue to work on what starting at the beginning, including the most important facts, etc., but for second grade…again not bad! J

For this particular narration, I asked Carli to tell me what Abraham Lincoln was like. She included a story she remembered from a while back (President's Day??), I thought it was a good example of Lincoln's personality. I then asked her to tell me briefly about Abraham Lincoln and the Civil War and slavery.

This is unedited. I did help her with the date and the names of the two armies.

 

Abraham Lincoln had a very big smile. When he was young (like 15 years old), he loved to study the law book. He lay with his nose in a book and his feet on the tree. He was very smart and kind. He was more than six feet tall.

 

One time there was a man driving down the road and Abraham Lincoln said, "Please let me pass!" And the man said, "No, I'm not going to." Abraham Lincoln stood up and got taller and taller and taller and the man said, "Stop getting taller!" and got out of the way into the mud. Abraham Lincoln laughed and helped him out of the mud.

 

He was elected President of the United States. There was a war in 1861 and one side was called the Union and the other the Confederacy, and they were fighting and Abraham Lincoln did not like it.

 

He did not like slavery, and he let the slaves free.

Before and After

Before surgery

Perched on Mama's lap...a little sleepy at only 6:15 AM

All dressed for surgery

Silly girl rolling her eyes (probably at Pastor Kraig!)

Granny comes bearing gifts from afar (Pennsylvania!)

Breathing treatment (she was as happy as a clam with Granny holding her)

And she's off to see the surgeon!

After Surgery

In PACU (Post-Anesthesia Recovery Unit)

Before Morphine

Now in PICU (Pediatric Intensive Care Unit)

After Morphine

Good Night!

Before-Surgery X-ray

The severe curve is called kyphosis.

Since she had her head tipped back for this x-ray, you also get a good look at her VP shunt.

After-Surgery X-ray

You can see the two rods side by side.

There is still a very slight curve, but the huge curve is gone!

The cables wrapped around near the top of the rods allow the rods to grow with her

so that she will not require surgery every year to adjust.

Before-Surgery Back Pics

This is one of the few really good pics of her back I have.

She was less than a year old here, I believe.

Ready for surgery

The discoloration over this area is probably due to how much they had to stretch the skin to put her all back together after her myelomeningocele repair two days after birth.

After-Surgery Back Pic

Yesterday Madeline was pretty sleepy most of the day, waking only to wimper, sign cup, and get more morphine. She drank lots of water and generally looked at us like, What did they do to me?? She ran a high fever which Dr. Didelot said is completely normal for spina bifida kids. Evidently the since so many of her nerves are dead, they cannot tell the brain that there is inflammation, so anything this huge causes high fevers especially at night for around three days. Last night she was running a fever up to 103.

So far today she has been awake more, and her temp is down to 99.5. She has had some valium for muscle spasms. She ate a couple bites of pudding and drank lots of PediaSure, cried when the bubbles and music went off on the thingy at the side of her bed, refused to smile for Mommy, and smiled and blew a kiss to Daddy when he came in!

We were moved out of PICU today, so we are all settled into our private room with a private bathroom and shower!

We've been so blessed by so many of you. Diana and Kirsten Metz kept the girls overnight so we wouldn't need to get them up so early in the morning, my mom drove from Pennsylvania to be with us during surgery and then to keep the girls through the week. Pastor Kraig and Aunt Pam and my mom's friend Susan spent hours with us here. We've received so many texts, emails, phonecalls and Facebook wall posts, and to top it off, a bunch of Glen's Twitter friends from all across the country went together to bless us with "out-to-eat" money (and evidently, we're going to have to eat a LOT (: ). You know who you are, and there is no way we could ever thank you enough.

Our worship pastor, Liz, sent me this verse yesterday, and I was so moved by it: Proverbs 14:26--Whoever fears the Lord has a secure fortress, and for their children it will be a refuge.