Thursday, July 21, 2011

Busy Summer Days

We've been pretty busy around here! Cade has just finished up his baseball season. They went 18-0 in the regular season! They played hard in some post season tournaments. And this past weekend was the district tourney but the boys just didn't bring their A game. They lost the game that would have sent them to the state tourney. I hate to end the season but it's been a good, long run! Really, so many families had things going on that it seems not going to state was a good thing!

We went to a birthday party at Chuck E Cheese on Saturday. Asa has been there before but only during the week and never to a party. When the party got loud I took Asa up into the climbing and slide area. He loved being up high and was just laughing and laughing!

He didn't mind the big Chuck E and even gave him a high five! Still the birthday balloon was more his size.

On Monday, my mom and I took my kids and my nephews to see Cars 2. Asa has never been to the movies because he isn't into TV and has sensory issues. But since we never really know how he'll react I decided to try Asa in a theater. Well, turns out Asa isn't a fan!!!! He did sit and watch the Buzz and Woody short at the beginning but he was not a fan of Cars. I had tried to prepare him for the show by telling him we were going to watch a big TV and it would be loud so we'd cover our ears. As I'd "cover our ears", Asa would hold his cheeks instead of his ears! So cute! It didn't help that it's 100 degrees here! Asa was over stimulated and gagging and hot so I drained his tummy and tried to take him into a store to cool off. Ha, the store wasn't even cool. After the movie we went to pizza place and I went to the bathroom to change his diaper. As I washed my hands Asa splashed in the sink! Why didn't I think of this before....the sink calmed him, cooled him off and kept him happy! Next time I'll remember that!!!!

Yesterday, we went to visit my SIL and took a nephew home. They just moved and have a splash park nearby. Asa wasn't a fan of the big sprays or getting splashed but he did like sitting and playing with this little fountain. They sprays didn't stay on but were activated by the kids. It seemed like the kids just ran from station to station to find the water. They exhausted me! Hehehe. We finished off the day at the neighborhood pool!

All in all, it's been a busy few weeks and we are tired!!

Saturday, July 9, 2011

The Holy Alphabet

The Holy Alphabet

A lthough things are not perfect

B ecause of trial or pain

C ontinue in thanksgiving

D o not begin to blame

E ven when the times are hard

F ierce winds are bound to blow

G od is forever able

H old on to what you know

I magine life without His love

J oy would cease to be

K eep thanking Him for all the things

L ove imparts to thee

M ove out of "Camp Complaining"

N o weapon that is known

O n earth can yield the power

P raise can do alone

Q uit looking at the future

R edeem the time at hand

S tart every day with worship

T o "thank" is a command

U ntil we see Him coming

V ictorious in the sky

W e'll run the race with gratitude

X alting God most high

Y es, there'll be good times and yes some will be bad, but...

Z ion waits in glory...where none are ever sad!

So when life throws you a curve, remember, that the shortest distance between a problem and a solution, is the distance between your knees and the floor. After all the one who kneels to the Lord can stand up to anything!

My friend Debbie posted this on her son's blog tonight and I just had to share! Isn't it great!! Please pray for Debbie and Hudson. Hudson battles horrible seizures. Because of work, Debbie and the 3 kids live several states away from her husband and the 3H's father. They are enjoying some good family time as one unit this summer. My prayer is that Hudson continues to do well, the seizure monster is better controlled and the family can have a fun summer together under one roof!

Wednesday, July 6, 2011

My thoughts on Roger Clemens

I know you all are waiting patiently to find out what I think of this whole situation. After all, I am a leading authority on all things baseball since I do have 2 All Stars! What do you mean Ponytail softball and 10 year old little league aren't the same as professional baseball?! Ok, it's true. I really don't know much about professional baseball. I can only tell you a handful of players and even then I probably know more about their personal lives than professional career!

At any case I'm gonna share my brilliant train of thought that came to me as I took my 10 minute shower. That's where I do all my deep thinking! There's no telling how brilliant I'd be if I took bubble baths!

So I started wondering how we can live in such a double sided society? Why are we wasting precious time and money investigating baseball and steroids? Do we really care if he was taking steroids? I don't think we do. Don't we show up to games hoping to see the big hits? The no hitter games? I mean don't we all remember following the count as Barry Bonds was on his home run quest several years ago? It was a nightly countdown on all the major nightly news! Ticket sales kept increasing as he came closer and closer to the big one. Did anyone care if he was using illegal drugs? Not really they just wanted to see the big hits!

We are a society of results. We pass off all kind of rule bending and plain ole rule crushing. We celebrate celebrities who are drug abusers or those who abuse women. No matter how bad the sin, we still buy the book, go to the movie or upload the newest record to our iPod. Perfect examples of that are Charlie Sheen or Lindsey Lohan. Have you ever seen a more perfect train wreck than the two of them but still they remain on top of the world! How messed up are we!

And then there is the whole fact that Congress is the one investigating! I'm not sure I'll ever understand that. Don't they have better things to work on than a major league baseball player using drugs just to give us what we want?! Didn't we elect these people to go to Washington to work for our benefit? We've already established that it is us who WANTS the players to shock and awe us.

So I think I've come up with the perfect solution! If we legalized steroids for professional players and tax them high, it'll be a win-win-win! We get our big show, the franchises get tons of money from ticket and merchandise sales and our country gets bazillions in tax dollars! Our national debit could be paid off before the 2012 election eliminating a million campaign commercials....HA, another win! And if no one wants to claim the tax money then I'm sure the UMDF would take it to find a cure for mito!

And to think that I came up with this perfect plan in just 10 minutes! Can you tell I'm just a little tired of all the superficial celebrity and athlete worship we do in this country! By the way I'll let you know when I decide if I'm running for President in 2012! I'm still designing the campaign bus! :-)

Saturday, July 2, 2011

A Special Trip


When Asa was born, 3 3/4 years ago, I found myself in a situation I'd never been in before. The doctors first used the word "hypotonia" and having no idea what it meant I came home and searched the Internet. It means floppy muscle tone if you don't want to google yourself. I'd never used the Internet very much. Mostly shopping and some coupon sites. Once I started opening the websites that had anything to do with "hypotonia" an amazing thing happened. I began to "meet" and share and love families who have kiddos who have floppy tone too. I learned so much about how to get my little guy to sit in carseats, strollers, grocery cart from people who have been there and done that. And that was just the beginning! There was constipation takes muscles to move that stuff out! I learned chewing and biting advice. I learned tips to catch the drool. There is so much to learn. It didn't stop there. There are developmental delays, feeding tubes, oral aversions, sensory disorders, speech delay and non-verbal. I've "meet" some awesome people!!!

And then there was the mito diagnosis. I learned that from my online buddies too. It wasn't one of the 5 specialist we were seeing who mentioned mito. It was my online friends! Boy, were they smart! And I've fallen in love with so many little kiddos that I've never met in person. Little guys that I've celebrated for, lifted in prayer and grieved for. Seems crazy to have such a relationship with a computer and pictures, doesn't it. But it doesn't to me!

I've met a few of these families in person over the years. A few in Houston on our doctor trips and a few are local to Nashville so I've met them at the mito meetings there. And this weekend I got to met another great family!

If you remember a few weeks ago I requested prayer for a little guy, Zach Moody. His body had gotten so tired of fighting mito and infections and after a week on hospice care he passed from the arms of his family to the arms of Jesus. Shortly after that his mom, Jen, asked if we'd like his wheelchair for Asa. Can you imagine a more giving and loving heart?!

We are trialing a chair for Asa and had just measured and gotten an order together for the very chair we were using. I called the DME and asked him to stop the order. Now you may wonder why we'd want a used wheel chair that was 6 hours away instead of letting insurance pay for a new one. Well, I'll tell you! First of all you are blessed to not know this info! Secondly, insurance will only pay for a chair every 3-5 years. Asa's Kimba stroller is considered a wheelchair. We got it about 2 1/2 years ago. We were pushing our limits even asking for anther one and there's a chance they'd turn us down anyway. Also I really think a power chair will be in Asa's future. "Future" because right now if he has power he thinks its a hoot to run over stuff! If you count it out he probably won't be eligible for a power chair until he is closer to 9 or 10. Now maybe he will have the strength and stamina to push a manual, or even better WALKING, but I'm being realistic here! Sooooo, by not accessing Asa's insurance for another chair we will be able to get him a power chair sooner! Can you imagine him with complete access!

So back to the Moody's! We said "yes", we'd be honored to have it. And 6 hours away is a nice road trip away. We planned on taking all the kids and having a little adventure but as I priced adventures, I quickly realized that it's pricey to entertain 6 folks!! Then Anna suggested she watch Asa and they could spend the night with my mom! I know....generous offer for a teenager but I'm sure it was partly because she wants babysitting money for new school clothes! Anyway, my mom had already offered so after some thought I accepted! A road trip alone with my hubby!!! Just me and Barry!! For 2 days! In a car for 6 hours each day. Wait a minute.... Just kidding!!

So Barry and I headed out and after 6 hours driving (and tons of traffic!), we meet Jen and Adam for supper before we headed to our hotel. When I first mentioned this trip to Barry he said "won't it be weird to meet someone from the internet". But I felt like I already "knew" Jen in a way. And I was correct! They were just as kind and easy to talk to as I'd thought they'd be. We all got along great and I truly enjoyed the meal. Well, maybe not so much the meal because I was so busy talking that I didn't even realize that I wasn't eating! Time just flew by. After we finished eating, we went to the parking lot and they got out Zach's chair. It looked like the perfect size for Asa and is a great chair. Even more special is that it came from a thoughtful family who wants to keep their son's memory alive and bless others like they've been blessed. I'm so honored to be part of it!

When we got home today and I put Asa in it for pictures he was so funny. We'd say "do you love your new chair" and he signed "love". He can push it on the carpet a little too. It is great support and Asa's been just sitting in it for a long time tonight. We are so thankful! Today would have been Zach's 4th B-Day so in celebration of Zack here's a few pics:


Thank you, Jen and Adam!!

And on a side note.... Barry and I are so old and married that we took full advantage of the 2 double beds in the hotel! We each slept in our own bed! I'm so not kidding! Best sleep ever, I didn't even roller over all night! Barry woke up and said "we really need a new mattress because I've never slept so good". I think it's because we had our own beds! hehehehe