Today was a doozy!

I let Asa sleep in this morning! I assumed he needed the extra rest. He had a big day on Tuesday and woke some during the night. So I let Asa sleep in this morning! Not gonna do that again! How many times have I said that?! I'll learn one day!

Sleeping in threw his feeds off. Because his feeds were off, his meds were off. These things aren't good to be off! Maybe he would have had an off day anyway but I feel responsible for it since I let things go.

We just don't have the luxury of getting up whenever we want to. Or eating whenever we want to. We need a routine, a schedule! Sure we have a little leeway but it is much smaller than I originally thought!

I keep thinking about school. I know, it is 6 months away but so many little ones have started recently that I can't help but wonder. What will happen if their schedule doesn't work with Asa's schedule? Asa's will have to change, I get that but it isn't as it seems!

And speaking of schedules, April is another GO month for appointments! We have 2 at Vandy next Friday and a hearing test on the 21st. We had a GI appt but I got a letter today saying that it had been moved to May and it was with a new doctor! Our GI is leaving Vandy. And they are closing the clinic they came to here at home! So now we get a new GI and have to travel again. I really, really loved that our GI came here once a month. Oh, well! Gotta roll with the changes!

It wasn't a total loss today though! Asa started riding his little car his OT let him use! He knew how to push the button and make it go but when he did this there was a jerk and noise and a lurch. He wasn't crazy about this. He'd do it once and then when I'd say "push the button" he'd just tap the button, not really wanting to push it.

Today I put him away from the back door, which he LOVES, and he had to push the button and make the car drive to the door! He did this 2 times!! If he'd get used to the jump and noise, he'd really love the freedom this Power Wheel gives him!! He could ride without anyone bugging him!!

Oh and he did some walking with me only holding him with the Walking Wings! This really makes him work on his own! Lots of hard work!!

Tomorrow he'll be up and on the pump at 8am SHARP!! Trust me!!

The non-post post

I wasn't gonna post today. I don't have any pictures and I know as entertaining and witty as I am, you only come by for the pics!!

But then I've just felt so blessed today. When I just think about that crowd from the race yesterday, I feel blessed. And maybe now there is less "mito what?" and more "I've heard of that". And then all of that money to be sent for support and research. Wow, just WOW!

And ya'll don't even know the story of Angie and Cindy, the organizers. They didn't know the Culley family. They met them at another fundraiser done in September, during mito awareness week. They had no obligation to do this event. They chose to give of themselves! And they are busy ladies with jobs and families and hobbies. Yet they spent months and months making this dream a reality. And it was so organized and planned out. There are so many sponsors listed on this shirt I'm wearing that I don't know how the printer managed! These ladies wouldn't take "no" for an answer when they approached these businesses. You don't meet people so willing to give of themselves these days. Angie and Cindy, you ROCK!!

And then my mom and dad and Lacy and Danilyn driving over an hour at 7am on a Saturday to walk with us! I mean, even I had thoughts of sleeping in!! And Lacy gets an extra cookie for getting her sweet peanut up and out after Danilyn kept her up so late! How great is my family!! God has blessed us beyond measure!

And then tonight, oh, tonight!

Asa was clingy to me and I was sitting on the couch with him watching Extreme Home Makeover. Asa was laying on the couch with his head in my lap and I was rubbing his hair. I realized he was doing these new hand motions. He had his hands up over his head and was kind waving them. It kinda looked like the motion we play when we did Patty Cake. I tried and tried to get Asa to play but he never would go past the clap and we kinda quit playing a while ago. So tonight, with him laying in my lap, I said "patty cake, patty cake, baker's man bake me cake as fast as you can". And he started clapping....no biggie, we knew he could do that. Then I added "roll it up, roll it up" and unexpectedly, he rolled it up!!! Just like I'd done so many times many months ago! Then I finished with "throw it in the pan" and he threw it! He threw it! He threw his arms in the air over his head!!! Just like he'd been doing when I first noticed!!

How crazy amazing is that?!!! Oh, there is so much in that simple game of patty cake! Do you see it?

He remembered a game we played for a long time and he couldn't do it!

He was playing the game on his own, in his head, before I ever started singing it!

He had the fine and gross motor skills, coordination and planning to play right along with my singing! There was a loooong time when he couldn't hold a simple rattle and raise his hands up. He still plays with toys with his feet because it is harder for him to get his hands and arms to cooperate.

Oh, such a simple game but such a WOW moment here! Who knows if he'll play again in the morning but it is back on the list of therapy play at home!!

And you know what tops it off....I posted on FB and had so many respond with cheers and "likes" that I was amazed again! Asa's cheerleaders ROCK!! I teased I was gonna start working on the Macarana next. Well, I was mostly teasing but if you see me being extra goofy and shaking my junk in my trunk then you'll know what is up!

The Amazing Race 2010

This is Asa's team!! My Mom and Dad came. Plus my cousin, Lacy and her sweetie, Danilyn. I thank them all so much for coming and supporting Asa and us!!



Meet the Loftins. Bryan, the little boy up high, has mito. His parents are Bo and Christine. Natalie is the little sister and Bradley is big bro!




And this is Jackson Culley and his mom, Emily! I didn't get a picture of his dad, John and big brother and sister, Wesley and Emily. They are a great family and the race was in honor of Jackson! Millington is his hometown and they sure do love some Jackson there!!




This was one of the most amazing things I've ever been a part of. They estimate that there was at least 500 people there today. Nearly 300 runners, plus us walkers and volunteers! The UMDF will be sent $18,500!!! And that is after expenses! Can you believe it?!! I was so excited when we pulled up and saw so many cars in the parking lot already. And then as we were getting out, they just kept coming in! If nothing else we got the word out about mito, don't you think!! The next run is scheduled for March 26, 2011!! Mark your calendars!! Maybe I'll run next year!

Asa did great today. It was windy and busy and he was great!! He showed off his stepping skills for everyone. He played on the blanket with Danilyn, Cade and Gracie. He had a good time! He had a rough spot late this afternoon but at least it was at home and not while we were out and about!





Thank you, Mrs. Margaret, for the reminder of that wonderful verse!! I keep telling people that I wasn't sure if we'd see Asa step or drink from a straw but just look at him now! I should not be surprised that God answers our prayers, the big ones or small ones. He only wants to bless us! He wants to pour out good things all over us. We just have to ask and believe that He'll do even more than we can imagine.

A little like the race today. Maybe we had hopes of 100 people and a $5000 donation. But look what happened! It rained on Friday and is supposed to rain on Sunday. But today was great! I don't believe in accidents. I don't believe in luck. I believe in God's blessings on our lives!! Praise God from whom all blessings flow!!!

Milestone, baby!!!

Forget inchstone, we've got ourselves a bona-fide milestone!!  At feeding therapy today, Asa drank a juice box from a straw!!!  Yes, he drank from a straw!!!  The fact that he drank at all is amazing!  But a straw?!!!

His therapist started out offering the juice box.  He finally let her get near his mouth and she squirted some juice in.  Then he closed his mouth around the straw.  Then he started sucking and swallowing on his own!!

In a whispered voice I asked, "Is HE doing that?".  Jill whispered back, "Yes!".  Then we both went defcon silent!!  And our eyes filled with tears, the room became brighter, I heard some angelic singing!  Seriously, it was a sweet moment!!!  Jill has been working with Asa for 2 years now.  Her original goal was to help us avoid the tube.  Yeah, that didn't happen and Asa usually gives her a hard time.  She came back from maternity leave just last week.  We think this was Asa's welcome back gift for her!!

We tried the juice again and he refused until she got him his very own straw.  Then he held it out to me while he sucked on his juice box again!!  He even drank from a juice box at home tonight.  That I have pictures for.....

We also bought a new toy today.  I've wanted this since I saw it back a few months ago.  Then yesterday, when I couldn't get Asa out of the sun and heat, I decided we'd use this alot.  I was so very happy to see it was marked down $20 when I went to the store to get it today.  You won't miss us at the ball field!  And for a Smarties sucker we'll let you sit in our shade with us!  :)   It is 7ft. wide so it should hold a bunch of us, or one of us who decides to scoot all around!  When I opened it up in the house to try it out, Barry said I just brought all kind of bad luck on us!  The thing is huge!

Barry was just jealous cause this is what he was using while he grilled out in the rain and hail!  LOL!

And while Cade was doing his homework today, Asa scooted over to him and started trying to play.  First, he put a toy on Cade's chair and Cade would knock it down.  Asa thought this was great and kept putting the toy up there.  Then he started pulling on Cade's arm like he wanted him in the floor with him!  Cade finally asked me to move Asa cause he was distracting him!  HA!!  This really did go on for the whole time Cade was doing his work.  Asa sat under him trying to get his attention!

Lessons learned today....

I learned a few things today!

1.)  Asa likes the thought of outside more than he likes the outside!   He'll sit at the doors, opening and closing them but once you take him out, he wants back in!  Seems the wind, sounds, grass, sun are all a little too stimulating for him.

2.)  He prefers the feel of grass over the concrete walkway.  I had him in a little sunshade tent that had been Gracie's.  He scooted out of it and sat in the grass for a while.  But he didn't want to sit on the concrete walk unless he was in the tent.  I'd have thought he'd like the rougher texture more than the grass.

3.)  Speaking of grass....he ate grass!  Really, the kid who refuses pudding actually picked up and put a piece of clover in his mouth!  I realized he was making a face but I thought it was because he'd just gotten into the grass and it was still damp.  Only several minutes later I saw some green in his mouth and pulled out clover!!   I have enjoyed him not being oral and rarely putting stuff in his mouth.  Guess I'll have to watch more carefully!

4.)  Asa can push the car to go but seems to be happier just sitting in it.  Hopefully that will change and he'll explore his world.

5.) 70 degrees is when the cooling vest needs to come out of storage!

6.)  Boys who play outside need baths!!!

The Mito What? 5K is on Saturday!!!  I can't wait!!!  It isn't too late to register.  You can register the morning of the walk for $25.  It looks like the weather is going to be great.  There are nearly 400 people signed up.  Plus tons of sponsors.  I can't wait to give you the totals!!  It's gonna knock your socks off!!

Boys and their toys....

Last week Asa's OT mentioned a ride-on toy he thought would be good for Asa. He said it was a Power Wheel with the "go" button on the steering wheel. Now, we've had a few 4-wheelers, a Barbie jeep, a Princess car.....well, several Power Wheels but I've never seen one that I think Asa could come close to handling. So naturally, I came home a Googled. And I found this......

Then I checked it out at the toy store. Hmmmmm, seems like that might work. It has a seat with a velcro seat belt. The seat has a pretty high back. I think he might be able to handle that one. Who knew they made a Power Wheel car for an 12 month old! YIKES!

So, today Mr. Jim brought in the one he had at his house from his kiddos. And Asa was very interested! We thought he might startle at the sound but nope, he liked it! And this is one is way more secure for him. He pushed the button 2 times all on his own. He seemed happy to just sit in it and rock to make it move a little. I forgot to take my camera today so I don't have pics of him at therapy. BUT, this is at home.....

By this time the batteries were almost gone so it wouldn't really go. We brought it in and charged it some and then Asa rode in the kitchen! He pushed it once on his own. He just really likes sitting in it. Maybe he is getting to know it. Taking it all in. Kicking the tires. I can't wait to take him out tomorrow!!

And then there is Cade! Barry and Cade have been making 4 wheeler trails in the woods. Of course, there has to be a stream and water and mud involved!! The first thing Cade thought of when he saw Asa's car is that now Asa could ride the trails with them! SURE!!! Cade has come home covered in mud several times. This is today......

And you should see the 4 wheeler!

And just for the record, he does wear a helmet and it was covered too! ;)

We are all so glad it has finally warmed up a little here. You might notice that Asa is in his diaper only this afternoon. Yep, it was 70 and we were waiting in the car pool line and he was getting hot again. So off came the clothes! He didn't overheat though!

Happy Spring!

Today was the first day of spring and it felt like it!!  The last few days have been wonderful.  Asa has enjoyed some time outside and loved it!  Today it was 72 degrees and while that is wonderful, it isn't the norm and means some yucky weather is on the way.  It is supposed to rain tonight and the high for tomorrow is 50ish!  Fun, right!

I took Asa's gait trainer out to the driveway yesterday.  He couldn't push to well on the gravel but cracked up when I pushed him around.  He likes the bumps!  Sometimes I go over speed bumps in parking lots a little fast just to make him giggle!  Shhhh, don't tell Barry!  

Anyway, Asa did better on the walkway and back deck!!  Tonight he'd scoot to the back screen door and push it open.  He has been doing this for a while and loves how the door comes right back to him.  Tonight, though, he was getting brave and he'd get really close to the edge of the threshold.....almost like he was going to plop right on outside.  It is quite a drop off so I'm sure he'd not made it without falling!  He was getting brave though.  I took the gait trainer out but it was getting windy so he'd want right back in.  Then he'd want out cause it looked like so much fun!  If we had more room he could just get a ramp and go in and out on his own!  BTW, the plastic outside the door is a bag of Pedisure bottles I'd bagged up for Barry to take off.  I had them inside the back door and Asa put them outside!  HA, he takes out his own trash!!





Next Saturday is the Mito What 5K!!  There are 9 of us going to show support for Asa!  It isn't too late to sign up!  You can register on line here.  I think you'll be shocked to learn how much has been raised to send to the UMDF!  I know I am and we don't even have the final tally!!  It is going to be a great day.  Praying for good weather for all of our kiddos with temperature issues!

More pics, less talk!

I've been short on pics lately, right!  Well, get your fill tonight!!  These are just over the past week!

PT this week!

 

 Asa decided to tackle the steps this week!!  He was doing his usual walking and then veered left, towards the steps!!   He did well though and it became his new favorite therapy! He was great at up, going until his PT was tired, but down.....not so easy!!  He only did that a few times with any kind of proper form!

 Then, today, he thought he'd try out the wedge mat!!  A little harder since it gives a lot.  Oh, and he wanted to try the balance beam but it was a little too high for him to step up on!!!  What an adventurous boy!

He has been after this light in the van for a few months now!  He loves, loves, loves lights!  This one has been out of reach until today.  Not only did he reach it but he could push it and turn it off and on!

You  can see he is reaching up just as hard as he can to get it too!!  I know it looks like he is just reaching up and touching a light but for Asa this is sooooo hard.  The picture doesn't do it justice at all.  Tons of effort!!  And yes, his shirt is completely opened!  He gets so hot that I opened his shirt, opened van doors and window, 65 degree weather would  be enough to keep him cool while we waited on the 3 o'clock bell.  It wasn't, he was red and sick when we got ready to leave after getting Cade and Gracie from school.  Time to break out the cooling vest!!

Asa in the gait trainer on the deck wearing his pump backpack!  Such a big boy!  And the muscles on the shirt are fake.....just in case you were wondering!  :)

Asa's new PECS cards.  He gets to make choices, yes or no!  This is just the beginning my friends!  We have a great plan for him!!

Feeding therapy....not so great. Sensory therapy.....YAY!!! He played in the yogurt for a long time!

And I don't have pics but Asa started walking while you just hold his hands this week!!!  YAY!!  This was a long term (6 month) goal.  Well, the 6 months came and went and I wasn't disappointed cause I had my doubts about this goal!  This week though, Asa felt secure enough that when we'd just hold his hands, he'd keep on stepping!!  I don't think he made it the 5ft set in his goal but it is great progress!!!  He has felt so firm lately.  Usually we sit him down and his legs just collapse, ready to sit.  Lately though, he locks his knees and stays in standing.  It is an odd feeling to feel him stead and not so noddlely.  As my mom pointed out today, why are we so amazed by this.  Hasn't this been our prayer for so long.  Why are we surprised when it starts happening!  Woooo Hooooo!!!

Top 10 kind of day

Today has to be one of the top 10 normal days we've ever had!  A normal top 10 day, not a day with a lot of celebration or hoopla.  Not like the day you got married or the birth of your children or the day you accepted Christ as your Savior.  But a normal, regular day!!  This has to be in the top ten.  Let me tell you why......


Exhibit A:
We are on day 2 of no puking!  No gagging.  No sweating.  No clingy.  No sickies.  No venting.  No draining.  That alone makes it a good day!  I could just stop there but I won't!!


Exhibit B:
We made it to OT this morning.  Last week Asa got sick (see the above reference) and we had to cancel.  Not today though!  And while Asa didn't actually eat any of the Chick-fil-A gravy, he did play in it!!  Did you know that as tasty as that stuff is, it can hold blocks together like concrete?!  Just sayin!  So Asa played in the gravy and stacked blocks!  And he signed "all done" when he was "all done".  And he screamed when he was  "ALL DONE"!  Seriously!


Exhibit C: 
Even though Asa didn't eat the gravy, he did eat new things today!  He had 1/2 container of yogurt at breakfast.  He had several pinches of my PB & J sandwich at lunch.....even signing "more" when we wanted more.  He tried refried bean at supper.  And a hard taco shell, which I only let him suck on for a second.  Plus about 4oz. of juice throughout the day. And multiple handfuls of chocolate cheerios.   He ate more today than he usually does in a whole week!!


Exhibit D:
Even after all the stuff in exhibit C, he didn't get sick....see exhibit A!!!  Totally worth mentioning again!


Exhibit E:
Asa did some good upper body work by laying on his stomach on Cade's skateboard and pushing himself backwards!!  He did a little forward but a lot of backwards!!  The main thing here is that he could keep his head up off the skateboard while he pushed off with his hands.  He hasn't had that kind of upper body strength, well, ever!  And he didn't freak out while he was doing this!!


And there are lots of little things, like tons of laughter and silliness.  Lots of dancing when I'd say the word "music".  Lots of scooting.  Cuddling with Cade in the recliner, making Cade one happy big brother!!  Chasing Anna around while she scooted and hid from Asa.  Scribbling in a notebook with Gracie!  It really doesn't take much to entertain us around here!!


So, I think all of these tiny things add up to one amazing, fun day!!  Maybe tomorrow will be even better!!!

Ding Dong Cake

We had lunch for my mom's birthday on Sunday.  Well, her birthday was March 6th but we didn't have the birthday lunch until Sunday.....does that make sense?!   Anyway she gave me a recipe for a cake she wanted and it was a breeze to make!  There are no pictures though because mine turned out UGLY!!  But it is the taste that matters, right!   In the end the cake should look like a huge Ding Dong snack cake!

Ding Dong Cake

Cake
Devils food cake.....cooked as directed and cooled

Filling
1 bar cream cheese
2 cups powdered sugar
8oz. cool whip
Blend cream cheese and powder sugar until smooth, then fold in cool whip.

Icing
Milk chocolate cake icing


Bake cake according to box directions.  Add the filling between the 2 layers.  Microwave the tub of icing for 30-45 seconds.  Stir well and pour over cake.  Keep cake cool.

That is it!  Really!!  Now I went wrong by not getting the filling smooth enough.  And there was so much filling that I tried to use it on top of the cake too but when I poured the icing over it, it kinda slid all around!  Not pretty but sooooo good!   So my tip.....it makes a ton of filling so buy some fruit to dip into the extra filling!  Or just eat it with a spoon!  :)

My sweet Moma cooks lunch for 16 people each and every Sunday!!!  8 adults and 8 kids!  All at her house most any Sunday!!  And she cooks a huge, delicious meal.  No ham and cheese sandwiches here.....unless we've planned a picnic, which we've been know to do!  Yep, she makes a spread.  And we use real plates and cups!  I'm just saying, for our family of 6 we use paper an awful lot just so we don't have to wash!!

But on Sunday we cooked for her!  My sis in law made a great salad.  Here we do iceberg from a bag but not at Cindy's!  Super pretty and yummy!  It really is a restaurant worthy salad!!  And she also made homemade ice cream that doesn't need and ice cream freezer!  That and the cake were soooo goood!  But after making lunch for everyone, I don't know how my mom does it every week!



And on a total different subject....Asa didn't get sick one time today!  No puking, no venting, no draining!  Nothing!  Just a happy scooting boy!  Oh, and his scoot has changed!  He now kinda steps with his scoot.  He started out keeping both feet together folding in front of him.  Now he has them separated and will kind of step with his feet while he scoots!  It is pretty funny!

Gracie had ball practice tonight and I got to take her.  It was a lot of fun to see all of the girls running around! I never played soft ball (well I did play 2 years of church league but I only played so they'd have enough!) and  I can't wait for the season to start!

Is it Sunday night already?!

Why do the weekends go by so quickly? Why does Sunday night come around faster than Friday? And did you spring forward?! Asa started getting up at 5am on Friday and Saturday so I think he sprung before the rest of us!! Now we are just caught up to him!!

We have had a great weekend. Cade had ball practice on Friday and Saturday. Barry is so excited for him this year. I can't wait for the games to start!

Asa is still having several episodes of gagging and sick a day. It is different from the reflux sick though. With the reflux, you could just tell he was struggling. This is more like the autonomic reaction sickness. If things aren't going exactly right, he gets sick. On Saturday it was cool and windy. I took Gracie and Asa to buy groceries and we had to coordinate our van entry and exit so he'd get as little of the wind as possible. Even with the planning he was still hooked up to the Farrell bag most of the day. Some days I really want to get to the bottom of what is going with this and other days I just give in and accept it is just how it will be, no need to do any testing.

We had a chili supper and auction to support our local volunteer fire dept. I bid $4 on some steak knives because no one else was bidding and I felt badly for the knives! Today Barry unpacked them and found a $25 gift card for TGIFridays!! Pretty good turn around, right!

I've also spent a good portion of this week and weekend searching for the perfect backpack for Asa! I sort of have an obsession with bags!! I used one of Cade's old school backpacks and adapted it to carry Asa's pump and feed, plus the back pocket is for a diaper bag! It was really easy. But Cade's backpack is too big. We don't need that much space! I'd just load it up with stuff and then it'd be so heavy! Still for someone who doesn't sew, I did pretty darn good!

Hope everyone has a great week!!

Holland

One of the first things you learn in Special Needs Parenting 101 is the poem by Emily Pearl Kingsley, Welcome to Holland. Actually there is no such class but there should be!! Recently I found a follow-up poem for those of us who have been in Holland for a while and are making it our home. I thought I'd share both poems today.

Welcome To Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a

disability - to try to help people who have not shared that unique experience

to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation

trip - to Italy. You buy a bunch of guide books and make your wonderful plans.

The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn

some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your

bags and off you go. Several hours later, the plane lands. The stewardess

comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm

supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and

there you must stay.

The important thing is that they haven't taken you to a horrible,

disgusting, filthy place, full of pestilence, famine and disease. It's just a

different place.

So you must go out and buy new guide books. And you must learn a whole new

language. And you will meet a whole new group of people you would never have

met.

It's just a different place. It's slower-paced than Italy, less flashy than

Italy. But after you've been there for a while and you catch your breath, you

look around.... and you begin to notice that Holland has windmills....and

Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all

bragging about what a wonderful time they had there. And for the rest of

your life, you will say "Yes, that's where I was supposed to go. That's what I

had planned."

And the pain of that will never, ever, ever, ever go away... because the

loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to

Italy, you may never be free to enjoy the very special, the very lovely things

...about Holland

Celebrating Holland - I'm Home

I have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.

I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.

I think that Holland is used to wayward travellers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?

Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.

Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Most days I really like Holland. We've all adjusted to Holland and I have a hard time imagining Italy. And I've met some wonderful families while here! So many smart, kind, caring and encouraging parents. And Holland isn't so bad. There is always lots to keep you busy!! :)

Naming a post is difficult!

This morning started off great GI wise. I tried some babyfood but Asa wasn't interested. He did take a bottle of Pedisure from a sippy cup though. We didn't use the pump until lunch. That is when things went south. I feed Asa after therapy on the way to the grocery store. The last 2 Thursdays he has gotten sick. I wonder if there is something to it or just a coincidence. I thought maybe the car seat is at a bad angle but he also gets pumped at 2:30 in the car. We do this feed at 12 instead of 11:30. Could that play a part? It is probably just random but it is odd.

So I had to go by the bank for the PTO and Asa was being drained into a Farrell bag to keep him from puking. I had 9 rolls of change. I begged them to take it at the drive thru window but they can't take change. I know it is a good rule but is there no room for exceptions? So I park, get Asa and his bag of stomach contents and the money and trek into the bank. And no I'm not hiding the bag of gross. I did consider putting it in the diaper bag and taking that in but that would be something else to try to keep on my arm. Holding a baggie was much easier. No one said anything and maybe they didn't notice but I was proud we made it in and back out without him puking on their pretty floors!! Would have served them right though! YUCK!

On the plus side for today.....Asa went up the stairs at PT! They have a little step and deck built for the kids to practice going up and down. Asa always walks to leave therapy while his PT uses a rolling stool to support him. He isn't bearing his weight but the steps are all him. Usually as he nears the end of the gym he makes a right turn, towards the exit door. Even if this is only a practice walk, he takes a right is ready to go. Today, however, he turned left! Directly towards the stairs and deck!!! And he didn't hesitate one second to go up those steps!!! He loved it up there! King of the hill! He didn't do so good going down. In fact, only once was it his idea to go down, he was perfectly happy to hang out up there all day! In all he went up 4 times and down on his own (his own decision) once! Who knew he could do stairs. And just the fact that he wanted to try something new is amazing. That is so not his personality!! I think he wore his PT out though!! :)

His speech therapist was back from maternity leave but he didn't give her a big welcome by eating. :( I was hoping he'd really show out! Instead he refused her pudding and puffs. Oh, well, there is always next week. We talked about his frustration level and his receptive language skills. She thinks he is ready to start using a communication device. At least look into one. Just a basic picture board or book to start with. I'm gonna take pictures of his favorite things and put them in a photo album for him to start with at home. I'm thinking the fridge (door open, of course), the dish washer, the ceiling light and phone are all good things to start with!! My silly boy!

Enough about that guy! Cade and Gracie both have their first ball practice tonight! I had a PTO meeting but I can't wait to hear all about it!!! I'm sure I'll be so sick of ball before it is over but it is so exciting right now!! Cade is moving up to kid pitch and Gracie to girl softball (coach pitch)! Lots of changes and adventures!

Boy, that last post was pretty negative, huh?!! Somedays are just like that. I hate to see Asa in pain. I hate to have him puking. I hate to clean up puke. I hate to stop life to deal with puke. It doesn't take much to imagine that all this puking for the last 2 years is one reason he hates food. He barely know stuff is supposed to go in that hole, it is usually coming out! After this streak I'm wondering about things we could do differently. We don't see the GI until May. I'm hoping things are on an upswing by then. If we saw then this month there is no telling what I'd be begging them to do for him!

I know puke is minor for so many people. Puke is just an annoying fly in the grand scheme of things for so many. But to me it reminds me that things aren't right. It reminds me that our lives are different, changed. For some reason, using the feeding tube at meal times is normal. I have no problem plugging him in to get a feeding while we eat. I have very little problem with him not eating. That is normal. That is fine. BUT, when the puke starts flying.....that isn't normal. Makes me think of progression. Not a fun thought. I pray this flare up is because the insurance took away his Nexium. Now that we have it back, I fully expect him to go back to normal....right?!

And in these 2 weeks he is eating even less than before. Maybe the dots don't connect but it seems odd. He had cream of wheat, mashed up beanie weanies, cream potatoes, bites of bread. Now zero, zilch, nada. Even the yogurt and applesauce don't pass the test! So here we go starting all over.

I have a plan though. How many times have I uttered those words?! We have had set backs before when Asa has gotten sick (or something) and his motility has stalled or stopped. So now we have the e-mycin and while I'm not using it day to day, I think it'll work when he has a slow down. And since we have the Nexium back on board the reflux shouldn't bother him. As long as we can keep those two things under control we stand a fighting chance, right? Surely we do!

He had a dose of Nexium last night and took 2, yes 2, bottles of Pedisure at bedtime! I thought he'd get sick but nope, he was fine!! Now if we can only continue that trend!!!

Stinky!

Today was a pretty rotten day for Asa! He had some mucus in his throat and was gagging and puking this morning. He missed OT because of all the puke and gagging. He was so clingy that I couldn't get him ready and keep him from puking at the same time. Things improved this afternoon. But then tonight he flared back up.

Cade had been in his room playing with him. Cade was hiding and then jumping out to surprise him. Asa loved it. He really gets tickled. But the kids miss the stop cues! They keep the game going well after Asa has had enough. Tonight was no different. I got out of the shower and Asa was sick! I feel bad fussing at the big kids but they have got to learn he can't play like them! He can't play wild for more than a few minutes usually. It really sucks but that's just how it is.

So then I spend the next 2 hours in the recliner with him. First I drained him so he wouldn't puke. Then after a little while I started a gravity feed that took an hour to go in! Super slow for him. Still, he started getting sick. By that time I was done! I get so tired of spending hours a day keeping him from getting sick! You might wonder how tiring can it really be holding him for hours a day?! Well, next time I'll let you try it!!

On the positive side....the Nexium was approved and I can pick it up tomorrow. That means he won't get a dose until tomorrow night but hopefully things will get better. Things have to get better! Is 8pm too early to go to bed!

YEC 2010

I don't know if YEC is a Tennessee thing or if lots of you know about it. YEC stands for Youth Evangelism Conference. It is a weekend of music, messages, skits, laughter, praise, worship....all for the glory of God. Sure it is geared for youth but thankfully those youth need adults to go with them!! Maybe I'm just a youth at heart but I feel so blessed to have gone on this trip!!

So some of my brief notes from the messages we heard!

1.) God is a loving God but He will not chase after us. He will not compromise His expectations in order to draw us to Him. Luke 18:18 tells the story of the rich man. When told to give his riches away and follow Jesus, he refuses and chose wealth over Christ. Jesus didn't let the man have a pass on this issue just to have him as a follower. What do we need to give up for Christ?

2.) God is good but He isn't always safe. He will ask us to step outside our comfort zone and challenge our desires in order to follow Him (see the above).

3.) Holiness isn't what we separate ourselves from but what we give our lives to. It doesn't just mean stepping back from a place but stepping towards God's will.

4.) Wet sponges left sitting on the counter will stink!! So will Christians who soak it all up but never ring out God's blessings and message on others! If we don't spill over and soak those around us, we will end up soggy and stinky!!

5.) If you give teenagers an inch of rope, they'll take a mile......and use it to tie themselves up around their ankles!! No, we didn't tie any kids up but rope might be added to the packing list next year! :)

Amazing music, amazing messages, amazing worship!! There was a great presentation by Joe Costillo, a sand artist. You have to see what he does....there is no explanation! We saw "The Passion" and "The Prodigal". Let me know what you think!!!


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On the home front....all went well! I had no doubt it would! Judy kept Asa Friday afternoon and handled the pump well. Then Moma had him while Barry took Cade and Gracie for ball tryouts on Sat. She handled the pump too, mostly!! She did let him talk her out of one feeding though! And when I say "talk her out of a feeding" I'm using those words loosely. Asa doesn't talk so he pushed her hands away and fussed and she backed off. He told her he'd take a cup but then he wouldn't! See, even without words, he can "say" alot!! I can't be too hard on her though because on Sunday he was taking a nap and instead of waking him up for the pump, I took a nap too! :O! He was sick later that night so I know a schedule works best for him but sometimes it is hard to remember that in the moment!! And Moma promised she wouldn't let him talk her into that again!!

And on Sat. Asa called 911 and a sheriffs deputy came to the house!!! Asa loves the phone and apparently had called them and left the phone off the hook. We usually unplug the phone from the wall before we give it to him but I guess this time he made a connection! The sheriff said it wasn't a problem. I bet Barry was so embarrassed!! I think I would have taken a picture of Asa will the deputy and called another inchstone!!! None of the other kids have ever done this!!! Not that I'll encourage him or let him do it again but it is kinda great!! :)

Boring....

I feel so boring with these posts!

Asa had PT, no huge breakthrough but good. I still wait for that one therapy where he suddenly gets into sitting on his own or pulls up to stand. Not today though.

Then speech/feeding. Need we say more. He has no speech and doesn't eat. And lest you get the wrong idea, it isn't the therapist! They are wonderful!! It is this puzzle of Asa. His original SLP went on maternity leave and is due back next week. Our "sub" has been equally wonderful. She gave Asa a goodie bag today and I'm excited to see him get into the treats!! She also gave him some choc. cheerios! Does she know the way into his heart or what?!

Then I drove through and got me lunch. I was so tickled that Asa let me, no he wanted me to, feed him pieces of fries! And you have to wash fries down with dips of Dr. Pepper. I promise he didn't have much of either. Yet, 10 mins after the fry, Dr. Pepper, applesauce, Pedisure mix.....he puked! No, he explosively puked!! In the car seat! I got stopped and hooked a drain bag up ASAP but the damage was done! Not a fun cleanup!!

BUT, his spare outfit was a "Life Is Good" outfit with a sippy cup on it. It said "Half Full"!! God's little message to me?!?!

Went to the pharmacy. Ins. still denies Nexium. Should I send the puke bag dangling from the chair?!

After school, took the kids to Skate night for the school. Dropped them off and bought groceries since Sir Pukes-a-lot interrupted those plans today. Oh, Barry kept Asa tonight....he didn't go to the skating rink!

And at some point, before 10am tomorrow, I have to clean out the van and pack for YEC with our youth group!! Fun 2 days!!! Really, I'm looking forward to it!!

During that time I'm leaving it all in the very capable hands of Barry, Judy, and my mom!! Nothing to worry about at all!



Oh, and if you want an email notice that a posted is in, please leave your email address in the comment section or for more privacy, email it to me. I can add you to the email list. kawilson95@hotmail.com


Thanks for checking in on our boring life!!

Kiss, please

Yep, check mark another inchstone off the list!



Asa OT recommended we teach Asa to "kiss" so that he can "kiss" food and textures. Asa will "love" by leaning into us when we ask. He even "loved" a puzzle piece when I said "love the puppy". I had no idea he'd do this but he did! But we've never asked for a kiss.

So today I was kissing everything....the spoon, the applesauce, the toy, the cup, the mailman (not really, just seeing if you were paying attention!). Asa picked up on this pretty quickly! His "kiss" is sticking his tongue out! Not really what I expected but it should be effective for therapy just the same.

At this very moment, he is "kissing" a plate. Anna asked for a kiss and he held the plate for her. She should have been more specific...she wanted a kiss from Asa not to kiss the plate!!

Really, being able to stick his tongue out will be handy. He has only gone through a few phases where he will stick his tongue out, usually teething. And he doesn't mimic clicking his tongue very often. And you use your tongue to eat and talk. Usually you teach kids to NOT stick their tongues out but we encourage it with Asa!!



And no, things didn't go off as planned today. Asa made a mess (all that needs to be said about that!) right as we should be leaving for PT! So I cancelled, he needed a bath and we'd have been way, way late!! I did enjoy not having to rush around though so it is all good. But tomorrow, tomorrow I'm giving myself plenty of extra time!!! Just in case, you know!

Oh, but we did get Cade's contacts in this morning. It was pretty easy!! He wore them all day too. He still had a headache this afternoon. He has decided it is from doing work! Yeah, not too sure how he'll get out of that one!

Tuesday

Today started off rocky too. I know this stuff is minor for many, many families but I can't stress how routine we are here. How routine I am! The only way I remember my schedule is because I do the same thing day after day. Mess that up and who knows where I'll end up! I pretty much just operate on autopilot! And this is day 3 were little things have thrown me off!

So last night Asa was up from 12-2:30! He wasn't sick, just up. He has been drooly so I thought it might be his teeth and I gave him Motrin. My grandmother asked if he could have had a nightmare. I don't know, do 2 year olds have nightmares. I've never really thought of that. I know Gracie has vivid dreams!! You'll never convince her that a cat didn't jump out of a tree an scratch her, even though she had no scratches! And this morning she got up looking in bags and on stuff for a ball glove she dreamed her daddy bought her. Very vivid for her!!

Anyway, it is kinda sweet when all he wants is you! He just kept putting my hands on him and on his face. Really, really sweet. He has a thing for hands, you know!

So I was dragging this morning and tried to get Cade's brand new contacts in. Not so much!! After 30 mins. he went to school in his old glasses. Even after school we couldn't get them. We tried everything. I finally put his contacts in my eyes to see if there was a trick. I even had trouble with my eyes! Finally, finally I got them in my eye and I thought I had it figured out. When I moved on to him, it did go a little smoother and he has them in now. Problem is he doesn't want to take them back out!

And he got in trouble for being too rough while wrestling with Gracie. When he found out his punishment was that he had to go to bed early, he started saying that I poke him in the eye over and over and I don't have to go to bed early!!! HA!! Clearly this is deranged talk!! I would have stopped "poking him in the eye" before we left the store with contacts!! And an early bedtime is a privilege, not punishment, for me!

So after our late night, slow start and contact fun this morning before 7am, I was looking forward to some breathing time before therapy. Unfortunately this didn't happen because Cade left something in the van that he was supposed to give to a teacher for me this morning! So when I was hoping to close my eyes for a few minutes, I was quickly getting the pump ready, gather my stuff for the day, throwing clothes on me and Asa and dashing out the door. All was fine but by 10am I felt like I'd run a marathon!!

The rest of the day went easy peasy though. Except for when the wind took Asa's breath and he started loosing it. Gaggy, sweaty, limp, sleepy. It all turned out Ok and really he is doing this less and less. All of that OT and sensory work must be paying off!

In OT today he played with cheetos. Well that was the plan. He did touch them a time or two!! At home however I got him to let me put it in his mouth. He still wasn't crazy about it and also made me put it down quickly. He wouldn't even touch it to throw it off the highchair. He made my hand go off the tray and then he shook my hand so I'd drop it. So funny. I bet there aren't many 2 year olds who won't jump at a cheeto!!

Stay tuned for tomorrow. Will this be day 4 for us or will our world turn smoothly tomorrow?! Aren't you just hanging onto the edge of your seat!!!

Not our normal Monday!

Usually, Mondays are pretty slow around here. There is no therapy. There are no appointments. Usually, Barry goes to work and the kids go to school. Then Asa and I have a quiet day to ourselves. I have to confess that it is hard to go from caring for 1 non-verbal child to a weekend full of chatty, busy kids and hubby. In truth, Asa is much more manageable than the whole brood of them! Usually, Mondays are pretty easy!

Usually!

Today, however, was different. Asa was up when I got up. Anna had gotten him up before I got out of bed. It is always dangerous to let him get a jump start on you! He was kinda a mess but we managed to get everyone out the door and off to school. I even remembered Gracie's lunch money....but forgot the picture money! Anyway, my morning routine was way off today. Thankfully, Asa went down for a morning nap and I found a nice peaceful late morning.

During this time I made phone calls. One call was for Cade an eye exam! Turns out it has been 1 1/2 years since he had his eyes checked. He was having headaches and complaining things were fuzzy. The doctor could get us in today at 1pm. So after Asa's nap we hopped in the van and made the pick up rounds and went to the eye appt.

Cade has talked about contacts for a while. I was hesitant but the doctor was actually on board. So after his exam (he went from needing a +2 to +3!!) they put in a set of contacts. It all seemed fine. Cade was beaming ear to ear! He looked pretty darn handsome too!

Then they showed us to an area and Cade had to take one out and get it back in!!! Oh, dear! He got it out with little trouble. But back in was another story!!!! He tried, I tried, we tried together! It took a good 30 mins and some sore eyes but it was back in!! The staff was unfazed by our struggle and happily took my money and kicked us out with instructions to come back in a week. I was hoping they'd pity my struggle and forbid him to leave with them, but NO! An elderly couple from the waiting room was encouraging him and when we left a younger guy was giving him some tips! I wanted to scream "this isn't a gooooood idea" but I kept my mouth shut and we'll give it a week (or a day, at least!).

Cade was a happy little clam. We (I) took them out early this evening and we (I) put some eye drops in his eyes to help calm those red eyes down. He wanted to know why he couldn't just leave them in all the time! HA! His tune is changing but I think he'll be fine once we (I) get a routine going!

Asa, Anna and Gracie were so good during this whole eye doctor process. Superstars, I tell ya!!! We were there a loooong time!

Between those contacts and putting a Nerf gun together, my nerves were shot. This isn't how my Monday is supposed to go!! Maybe Tuesday will be slower!! :)

Oh and Asa ate a cheerio off the floor!!! Yes, I'm bragging about it!! He scooted over to it, picked it up and put it in his mouth!!! Oh, and of course we only put it on the floor as a test for him. It certainly wasn't left over from this morning when he threw it off his highchair!!!

And during the whole eye exam and contact lesson, I was wishing I had my camera so I could take pictures and document for the blog!!! There is a problem when you see a blog post in life!! Still the pictures would have been awesome!!