Thank You, Momma

Clayton is so sweet. (You knew that already, right??) In the past, he has randomly thanked me for this and that, but these days he seems to be thanking me for the things that he knows he can't do on his own. It just melts my Momma heart.

I hook up his feeding tube. Thank you, Momma.

I change his diaper. Thank you, Momma.

I'm washing his hair. Thank you, Momma.

I push him to another room upon his request. Thank you, Momma.

I put on his night splints. Thank you, Momma.

I put on his glasses or his hand splint. Thank you, Momma.

All I can do in these moments (to keep from crying, that is) is immediately shower him with kisses and tell him how much I love him! There just aren't enough words!!

For the Love of Scrapbooking!

I got to get away to a crop this past Saturday--it felt great rummaging through my supplies to find just the right thing for each layout. And it felt really great to use the creative side of my brain again!!!

Poor Little Fella

Jackson's been running fever off and on since yesterday morning. He plays a little bit, but he mostly wants to snuggle with Momma. I'm hoping it's his teeth coming in and nothing more serious than that . . . also hoping it's over soon!

Test Drive

After lots of debating, praying, and thinking, we've decided to pursue the power chair route for Clayton. The change is still very scary, but that's a whole 'nother blog post . . . we were able to look at our first one today, and Clayton was just about to come unglued from the excitement! He wouldn't even let the salesman get through telling us about all the gadgets--he was READY TO DRIVE! We tried it in the house, but he just isn't that great of a driver and he doesn't stop when told to do so! We took him outside even though it was cold, just so he could have at it with no limits. The whole chair was a bit big for him, but those details would be changed on his actual chair. The joystick was a little far from his reach--I'm not sure if he went in reverse because of this or simply because he liked "backing it up" better than going forward. At any rate, he was having a blast and was sad to see the chair go back into the truck. As for us, we're more overwhelmed than ever with the decision. We're praying we find "the perfect chair." And praying it actually exists!

Something So Little

I'll admit it. I've always been a bit jealous of my friends when they mention dropping their kids off at another one of our friend's houses just so they could run this errand or that, go to an appointment, etc. With Clayton's medical issues, I've never had that luxury. Many people were willing, but most knew Brian and I were leary simply because there were always the "what-ifs." And just when we decided to branch out of our comfort zone, Clayton had his first seizure which sent us back into protect and isolate mode.

So over the years, that's basically left us with only my parents as trained and ready babysitters. And even they get burned out--and hey, maybe sometimes I want to do something with them for a change!! Not to mention they both work full time and some of these times I'm needing a babysitter is while they are at work . . .

I can't remember when Rhonda and I clicked, but we did. We went to the same high school, but weren't friends then. We go to church together and somehow last year we just all of the sudden became good friends. She's just one of those people I feel like I've always known.

I think what I like most about Rhonda is that she's not afraid of Clayton and definitely not intimidated by his medical conditions. She kept him when I was having Jackson and I didn't have to worry a bit. He absolutely LOVES being with her--he starts squealing like crazy when he finds out he gets to be with her WITHOUT me!!

And so it was again this week that I was reminded how something so little can mean so much to me------I needed to go somewhere Wednesday and couldn't take both boys (I'm just not capable of pushing a stroller and wheelchair at the same time). Rhonda immediately volunteered to keep Clayton and I was able to go without worrying about managing both boys. It's something so small, but I drove away from her house feeling so NORMAL.

NORMAL. Are we finally there on our own terms??? If not, we're getting really close.

Thanks, Rhonda. :)

There's a New Game in Town

Once a month, the local homeschooling group meets at the bowling alley. We went for the first time in December and also made it out this last week. At first, Clayton was a little overwhelmed by the new environment, trying to figure out what was going on. But this last trip, he really got into it and even WON the game! Guess that means we'll have to make it a priority to get to bowling every month so he can get even better!

Back to Square One

Well, after a horrible nights of sleeping last week, Brian and I broke down. The last two nights have been spent doing things the old school way. When Jackson came home from the hospital, Brian and Clayton ended up sleeping in our bed, while Jackson and I slept in the extra bedroom. Out of desperation, we're back to that. And even though it's totally dysfunctional, I've slept better the last two nights than I've slept in a couple of months!!! Jackson wakes up and I just hand the bottle over to him with no drama (although he still snacks way too much each night!). And Clayton sleeps soundly through on the other side of the house. Not that he had an uneventful night--Brian said it took him a couple of hours to get to sleep even laying with him. We'll do this until Clayton's new bed gets here in a couple of weeks. We've got that long to get his new room painted and ready to go--and to talk it up BIG TIME! Hopefully he'll be on board for the change!

Friday

Not much to blog about, but thought I'd better write something so the blog won't go stale . . .

**Jackson's into everything--he especially loves the fake grass in the pot of the ficus tree. Yeah . . . love picking that up constantly!!

**I've changed Jackson's clothes three times today and Clayton's twice. It's only noon--why can't they stick to one change of clothes a day? My laundry pile just gets higher and higher.

**Speaking of laundry, Clayton's medport on his line was open last night when we turned the pump on. That means when I noticed it an hour later that an hour's worth of formula had pumped right onto the bed and floor. Nothing like changing the sheets at 11:00!

**And speaking of nightime, Brian and I get no meaningful sleep these days. Between Clayton's nightmares and Jackson wanting to snack all night, we're about to pull our hair out. Last night Clayton started SCREAMING and scared the daylights out of a slumbering Jackson. Clayton recovered as soon as we went in and turned the lights on, but Jackson was a ball of nerves for the next hour. :banging head against wall:

**And on that note, why is it that during the day Clayton is all about doing things alone (when we pulled up to Hobby Lobby yesterday he told me to take Jackson in while he stayed in the car with the music!), but the moment bedtime comes, he suddenly can't live without me! Every. single. night. You can't leave him until he's fast alseep or he has a major meltdown. And I'm not talking about an "I need attention meltdown," it's an "I'm scared to death!" meltdown.

**Someday, we'll be like normal folks and put our kids to bed and go to our own bed and sleep, sleep, sleep. Won't we??? Someday???

Snow Days

We got our second snow of the season this week and it was totally unexpected. Slight snow flurries was all I heard. Woke up to heavy snow Monday morning and by the end of the day, we had six inches. (I know my friends up north are laughing, but six inches is a lot around these here parts!). It's still quite chilly, the wind is harsh! We ventured out to eat lunch and run a couple of errands, but now we're back home snuggled up under our blankets. I think more "flurries" are in the forecast, so we'll see how long it takes for everything to melt--doesn't look like it's going to be the usual "here one day, gone the next" this time around.

Jackson @ Eight Months

**four teeth with a fifth on the way

**into everything--especially things he can bang to make noise! (cabinet doors mostly)

**loves, loves, LOVES his Momma! (pretty much wants me in his sights at all times!)

**thinks his big brother is quite funny--loves to laugh with Clayton

**loves his fruit, tolerates most vegetables

**wants his Daddy to feed him supper (this is at the same time that Clayton is wanting Daddy's undivided attention after being at work all day)

**loves to go swimming in the big bathtub--I think he could stay in there until his skin wrinkled away!

**doesn't sleep well because he's too busy snacking throughout the night. who said formula makes babies sleep better????

**wants to take a cat nap a couple of hours before bedtime just to make it harder on us!

**is very jealous of Clayton, we spend most of our time around here making sure everyone gets equal attention!

**has hair that usually looks blonde, but in some lights has a red tint to it, just like his Daddy's.

**has beautiful blue eyes to match the rest of the family =)

Officially On the Move

Jackson's been hard at work trying to figure out the crawling thing. And after a couple of weeks of just barely scootin' along, he's finally gotten it all coordinated together and he's on the move! He still spends a lot of time shaking his booty in the air before he gets started, but he's gotten to where he can follow me into a room and is even starting to reach for the things he shouldn't. Things are going to get interesting in a matter of days!

Here's to the miracle of babies who can get into everything!!!

T-O-N

A couple of weeks ago, we finished up the letters of Clayton's name in our Letter of the Week program. We've been busy and I wanted to share what we did for those of you who use these resources. For the letter T:

On the bookshelf:

My Truck is Stuck

Big Truck, Little Truck

Tiger Can't Sleep

Tiger Trouble!

I'm Mighty! (book about a tugboat)

Song of the Week: I'm a Little Teapot

Our math lesson for the letter T was about triangles. I used flashcards for this and I made triangles with play-doh. I've also started using Starfall as a supplement to our lessons. Again, a lot of repetition, but Clayton asks for it everyday when we are finished reading our books. He wants to do something on the computer and these quick lessons from Starfall get his attention.

Next on to the letter O. I am so happy to report that by the end of the week Clayton knew that an octopus has eight legs. We also worked on opposites as an extra lesson. I basically just said them out loud each day and Clayton caught on--I wish I had taken the time to get some flashcards with pictures though.

On the bookshelf:

Oliver's Milkshake

The Ox-Cart Man

And to wrap things up, the letter N. Clayton absolutely loved The Napping House by Audrey Wood and I'm thinking we'll need to invest in our own copy of the book.

On the bookshelf:

The Napping House

Too Much Noise

The Best Nest

Noah's Ark

Song of the week: Penny, Nickel, Dime, Quarter by Ron Brown

To help with the writing, we are using a LeapFrog Scribble & Write. Again, Clayton is a lot more cooperative with writing as long as it's NOT ON PAPER! He did these last two N's with minimal assistance from me (just steadying his wrist). And then he got rebellious there at the bottom--he can only do it so many times and then he is DONE!

For math, we discussed coins (NICKEL) again . . . he can sing the song to me, but he can't quite make the connection to labeling the different coins and their value quite yet. We'll get there, though!

Snow Much Fun!

Cliche, I know . . . but when we took a little outing to the field behind our house, the boys did love it! Brian doesn't like that we spent so much on this stroller and use it rarely--but when you need it, you need it! Clayton got to experience the snow close up since the stroller has the all-terrain capabilities his wheelchair is lacking. We just plowed right through the snow with one person pulling, another pushing, and Clayton laughing the whole way!

All By Himself!

I love it when we figure out how Clayton can do something by himself--and sledding turned out to be pretty easy for him! That is, of course, after we went through a few homemade sleds that just didn't quite work out, even with some great engineering by Brian and the neighbors. We ended up borrowing a real sled (why don't we have one of those for a just in case??) from a neighbor who stayed up all night sledding and had no use for it this morning.

I think this is the only time I've ever been thankful for a steep driveway!

And who says a boppy pillow can't multi-task? Those things are great for several uses, including a back rest on a sled! As soon as Clayton would get to the bottom, he'd yell, "BACK IT UP!" Translation: somebody get down here FAST so I can go again!!!

Finally!

After a sleeting all day, we've finally had the changeover to snow! Big, fat snowflakes--it's beautiful coming down!

Meet Jack and Annie

After reading about these toy people on Pioneer Woman's website, my mom quickly purchased a set for Clayton. He's never played with "little people" and he loves these little guys! He immediately started calling the girl in the wheelchair Annie and soon after we began to call this other young man Jack. (All in an ode to his favorite books: The Magic Treehouse Series). And since they had names, we were obligated to name their friends. Brian helped him out with that:

Left to right: Nelson, Jim, Mrs. Walker, and Susan

And just like any other boy, he thinks it's the most fun to torture them by throwing them off his tray, sending them over to certain death---Annie is usually the only one who gets to stay on the tray and play!

On Being Creative

Remember when I used to share my creations regularly? Boy, do I miss those days! I've been getting a serious urge to let my creative juices flow, but there simply isn't any time to drag out all my supplies, much less actually get something done that I'll be happy with it . . . Plus, I'm a little obessessed with my videos at the moment and I'm determined to get several boxes of pictures into some albums that I bought (GASP!) at least two years ago. I bought six massive albums (so they would match of course), and I've yet to put one picture in any of them.
I'm hoping that once I get going on that task I'll give myself permission to play a bit with my pics and dust-collecting scrapbook supplies. Not to mention my cards--my stash of handmade cards is nearly gone and I loved giving them instead of store-bought. We'll see if I can get going creatively very soon!!

Happy Birthday, Pop!

December 2006

Saved my flashback pic for today since it's my dad's birthday!

Happy Birthday, Dad!

Wagon Trail

The weather has finally been warm enough for the boys to start enjoying a few wagon rides around the neighborhood! It feels great to get out of the house, even if it is for just a limited time. They both love it, but Jackson doesn't have any trouble showing his enjoyment! In fact, I had to watch him like a hawk since he wanted to hang out the side the whole trip! He was a wild man!

Clayton didn't have time to get his picture made since he was so busy watching the cars and neighbors.

But he did manage to smile for at least one:

We've even had a caravan going on some of these trips. Clayton thinks he's neat stuff since he's pulling Jackson in the wagon. Jackson had a party when he was in it by himself--he was literally about to bounce right out of there with all the excitement!

Can't wait 'til spring!!

Spoke Too Soon!

We saw Clayton's speech therapist today and it seems he didn't quite get the usual A+ on this year's evaluation. He made definite gains in receptive and expressive communication but he regressed in articulation . . . hmmm. I do notice him getting lazy with his speech a lot, so it makes sense he wouldn't necessarily have gains, but regress? Tsk, tsk, tsk! Let's hope he turns that around to impressive gains for next year!

Y is So Last Year

We are still chugging along with Letter of the Week and the routine is working wonderfully for Clayton. Our last letter before the Christmas break was Y:

On the bookshelf:

Farmer Brown Shears His Sheep, A Yarn About Wool

Yard Sale

This Next New Year

See the Yak Yak

Song of the Week:

Yellow Submarine

Online Resources:

Letter of the Week

HomeSchoolShare

First-School

For our math lesson, we measured ourselves with a YARDstick. I had him lay on the floor to get measured, and he thought it was so fun when he got to help measure Daddy and Momma! And when we were telling my brother about it, Josh asked "how tall are you?" Clayton answered, very sure of himself: "TEN POUNDS!" =)

Art projects are always tricky with Clayton, so I kept it S.I.M.P.L.E. with this one! We played with yarn all week, and on Friday, I had him help me glue the yarn in the shape of a y. Not much, but it took all his concentration to help me with this!

"Tell the Blog That"

So since Katy asked, and since Clayton is always wanting me to "tell so-and-so that," I thought I'd take a walk down memory lane and talk more about Clayton's talking. His receptive language has always been leagues ahead of his expressive language. And I really feel like (as do the therapists) the onset of spoken word for him was mainly delayed by his lung disease, since breath support is such an important factor in speaking. His mouth motor skills did and still do lack, but as his lungs have healed, his speaking has become better and better. He started speech therapy in the NICU, but it definitely was more aggressive once he was here at home. And since he was still very sick most of his first year and a half, we didn't see many gains in his speech at first. He has pretty much always shown signs of knowing what is going on around him, but wasn't able to really begin telling us until he was around two years of age. And even then, we were usually the only ones who understood him on a regular basis. These were his words in December 2005 (28 months):

He spent 2006 getting better lung-wise, but that was the year his seizures began, and with those and a couple of other issues, he had a few hospital stays. But by 2007, he was on a roll again, and he had become quite the talker: You have spent the first half of 2007 talking non-stop! In these last few months, you have literally had an explosion of words, the count quickly grew--100, 200, and now too many to count! You have so many words we can't keep up! I'm so proud that you are able to tell the world what you are thinking!

And of course, he had his own version of several words. If he did get up the nerve to speak to strangers, we spent a lot of time translating for him:

And we can't forget the music! He has learned so much just by learning song after song after song after song . . .With any lull in conversation or quiet time, this is what we hear from you. While stacking your fist, we hear you ask for "Wi-Built." This is your way of telling us to sing your favorite song, "The Wise Man Built His House Upon a Rock." And with such a cute way of asking, how can anyone resist singing it for and with you? June 2007

The sentences came in 2008, with most of them being commands. He learned quickly how to boss, boss, boss! I recorded his most used sentences in March 2008: Oh, big deal! Ready to go! Mama, get my vacuum. Guitar, daddy! Get my music. Go outside. Daddy's truck. Go kitchen. Get my green! It's too much! Get my dishwasher. Go in there, Mamma! Get my wheelchair. Ready go play! Katie's bed. Bye-bye house. Couch! Pop cook. Drama! Get my floor! Get my kick, Mamma! Daddy's grill. Did you poot? I can't take it! Kiss it. Good grief! Pop, get my baby. Bye-bye truck. Ready go bed. Get my book! Pop cry. Granny's house. Mamma, get my blanket. Help me! Hold you. Get my blue chair. Baby, belt. Hush, Chase! Oh my goodness! Go take shower. Get my piano. Samson, hush! I caught ya! Don't worry, be happy! Sing, Mamma! Diaper change. Sit in my chair. Go take bath. Oh my word!

And nowadays, if he's in a familiar environment, he talks non-stop--still spending most of his time giving commands to most everyone in the room. Tells everyone where they should be sitting, what we should be watching on TV (Food Network), what room he wants to go to next, what activity we should do next, etc. When he is speaking clearly, he is understandable (at least I think so but I listen to him all them time), but he still cannot say the "l" sound or the "x" sound. We do end up translating a lot when we around people who don't listen to him a lot. His big gain in 2009 has been mastery of pronouns. Every once in a while he still speaks of himself in third person, but he has really figured out the Is, mes, yous, us, we, etc. There are other issues (lack of volume, repeating not-so-nice words/phrases!); but for the most part, speech has definitely been the area of therapy he has excelled in!