Monday, June 30, 2008

Angel Kiss...

Hi fam..if you haven't's Luke video marathon week! I've been slacking on getting Luke on video so I've decided to power blog some fun stuff this week. You'll see his bye bye in yesterday's post!

The following is his BIRTH MARK video. Luke has finally discovered his big angel kiss on the bottom of his right thigh. It's a big cafe latte kiss. It's adorable and I love it. My stepmother tells me that my father has the same mark on the same side on the back of his thigh. I'll take her word for it. LOL.

Here you go! Enjoy my little mister hiking up his leg to inspect.

Saying Bye Bye...

Happy Monday blog fam. If you didn't read my blog over the weekend, scroll down to Luke's yoga move below. It's quite cute!

If you did....then I hope and pray your week goes well. With that said,...

Luke's so my kid. I say this because I'm a big transition person. Meaning, when I leave a party or function, I transition out slowly. I make sure I address the host/hostess and give them my thoughts and how I loved seeing them and give them big hugs. I'm a lovey person. I can't help it. I love people and with that comes very good, solid good bye's.

I never leave a party without closure. It's just me. My entrance is grand as is my departure. It can be quite annoying to my party companions as they are ready to leave and I'm still lurking around saying goodbye. DH normally heads for the car and leaves me by the way side. I don't care. It's just not 'in me' to leave out quickly.

So naturally, my kiddo says goodbye to the extreme. I love it. He's so my baby! Momma loves him greatly.


Saturday, June 28, 2008


Hey ya'll. Well, what a month with Luke. I snicker as I type this because it's truly been the craziest and strangest few weekends for us.

Meaning, for the first time in Luke's little life.....I've been venturing out to public places. This has been huge for me because we've sheltered him so much his first 2 years. So, this summer...I've decided to start venturing out and take the jump.

Now, my blog title point. Expectations.

So, here's the deal. You can only imagine the excitement in my mind to take him to a little zoo, or the mall, or better! Well, my excitement led me to expect great things from our little man. Granted, he's 2 1/2...but hey, I'm thinking he's going to love these places.

So, here's the rundown in summary of the last few events. Very funny actually. And, my expectiations are lowering by the event. I seriously need to just go with the flow and expect to come home sooner than later. Enjoy.

1) Event #1: Church.
Well, Ericka and I decided it would be fun to attend church with Luke for the very first time. DH was out of town. *a good thing as he probably would have said no.
So, me/Luke get there. Luke is excited and kicking as we get out of the car. I'm! This is going to be great. I'm nervous..but excited.
We get in the sanctuary and sit down. Luke's perfect. Playing with his animals and quiet as a mouse. Music starts, (me and Ericka are freaking out inside just waiting for him to cover his ears and wail!) Nothing. He loved it. Another gasp with excitement. Music over. Pastor gets up. Starts speaking. Luke wants to play in the aisle with his elephant. Ok, I let him. Then, he wants to talk outloud and babble while in the aisle. People start staring. I get up, take him out and we sit in the hallway for the remainder of the service. Expectation rating: 5 (great right up until the sermon to which I wanted to hear)

2) Event #2: The Mall.
Dh and I venture to the mall. Ride the courasel with horses. Baby is heaven. 2 rounds...we are done. Baby freaks...., cries and won't stop crying. Can't console him and snot is running down his nose. Dh tries to side track him at the Disney store..gets worse. I catch up and we decide to bail out. We head for the car. Baby still crying and screaming and then starts hitting me.
I lock him in the carseat while he's hitting me and then shut the door and walk around to the other side. Huge meltdown again. Total crying time from mall to home: 20 minutes. No kidding. Nightmare central. Expectation rating: 2 (very low here)

3) Event #3: The small, and I'm talking very small Zoo.
Dh and I venture to the zoo. Miss the trolley ride and decide to browse the cages with horses, zedonk and camel. 10 minutes later, we are viewing the camel. Camel sticks his head in between bars and peers right at Luke and barks at him. (whatever Camels do?) It was like a long "AHHHHHHHAHHHH". Really loud. Baby freaks out. LITERALLY FREAKS> Crying hysterically. DH tries to sidetrack him again with the flying monkey cage. GOT WORSE. Can't calm down. Snot running down his nose again. We leave. The attendants felt sorry for us and reimbursed our money back. Total zoo time: 20 minutes from car to cage and back to car.
Car meltdown time: 10 minutes. Expectation rating: 1 (very, very, very low and felt sad)

4) Event #4: The Pool
Longstory short, I had these grand ideas in my head he'd want to float all around the pool. Nope. He picks one place and sits there for an entire hour. I try to move him and float to other places in the pool. He freaks and starts crying. I put him back down, he readjusts and calms down and goes back to his happy dance. I can't get him to the sandbox. He's fixated with the wave entrance and wants to sit there the entire time. Expectation rating: 2 (he gets 1 point for wanting to be there) I just want to move around!!

I won't even elaborate on the last few errands we have run. In sum, it's been quite interesting and very challenging. I feel like little Luke. Poor little guy couldn't hold his head up and then BAM..overnight he could hold himself up. No time to adjust or get there slowly. Just bam! Done.

Well, I feel just like him. Overwhelmed as a momma with the BAM factor. Trust me people, NO COMPLAINING>......please do not take this as complaining. I just feel overwhelmed with processing how to handle him at these times. It's not something I've been slowly introduced too. You know? It's just we are. Does this make any sense?

So, I'm in the midst of the BAM FACTOR with my baby. It's been so funky, amazing, cool and humbling to watch.

Pray for us and my little mister. That he can adjust to this new social world. I want so much for him. I can't wait to see what God has planned for him.

Big hugs blog family, I love you.

Friday, June 27, 2008

Downward Dog Yoga pose

Hi everyone, happy Friday!

I've been taking some fun video clips of Luke here lately and it really shows his personality. The following video is his DOWNWARD DOG yoga pose.

I think he learned it from the Curious buddies - Let's move which he loves, loves!

note: I say pilates move on the video...but it's really a yoga move. Not to worry Ellen, I've got some clips of some pilates moves coming tomorrow! LOL.

Enjoy! Hugs, A

Wednesday, June 25, 2008

Daddy and me at the Pool

Because Luke is still not able to walk...(YET!!), we still venture out to the pool and he plants himself down at the wave entrance. He loves, love it. We are venturing out more this summer and the pool has been a great distraction from the Texas weather. Dang it's hot!

Below is video of Luke and Jonathan at the pool. As you will see, we've got the bomb pool. It's so fun! Hope you enjoyed my post today. Hugs, A

Congenital Myasthenic Syndrome and the heat...

Hi, Happy Tuesday. Water hose babybelow. Luke's summer fun on the porch. It's so hot's our only choice as Luke gets very lethargic during the heat.

I wanted to say something about 'heat' when dealing with CMS kids. In our case, with Luke's low muscle tone, we find that he gets really lethargic when exposed to high heat for a long period of time. To the point where he just sits there and can't move much. Even with the Mestinon medication.

I have seen on my special needs forum that this is very common with hypotonic children in general. So, I suppose it's because their muscles are already working so hard on a good day that when heat is exhausts them? Just not sure.

At any rate...

We keep him very cool! Video below is fun. He gets me in the end. You'll see! Hugs, A

Monday, June 23, 2008

Latest baby bump...

Baby bump front view. Not my personal favorite....but you get the picture.
****almost 1/2 way there. Whew....I'm ready now. hugs, A
p.s. been really tired. However, not feeling so ick at night. Which is good. I am having to take a few tums before bed. This is a huge deal compared to Luke's pregnancy. I was popping the tums from the morning water drink early am. Everything gave me heartburn..including water. But, this's very mild. Praise GOD!!
p.s.s. Would you look at Luke's long legs! He's getting so tall!!

Dad, Luke and Grandpa

Sunday, June 22, 2008

The Special Mother

Dear bloggies, I posted this on my myspace account about 2 years ago. I was browsing my site this am and read this again. I love it so much that it occurred to me I have never blogged it. goes. Enjoy. Love you, A

My words are....God is gracious.

Read this.....
The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

Saturday, June 14, 2008

Another Adult CMS friend found us!

Hey blog family, meet Adam! He found my blog and so graciously emailed us. I was thrilled that we've connected as I love, love seeing adult CMS people do so well. Of course, his story is beyond powerful. It's hard to read stories like his and not believe that we all have a great purpose on this earth. I was in awe reading his trials, his parents trials and his will to live. Or should I say..God's will to bring him this far.

Thanks Adam for creating your blog and telling us your powerful story. May many be so very blessed by reading your blog.

Here's his blog: Adam's blog

This picture below amazes me. Adam is on the right in orange shorts. See how he's barely standing up and hanging onto his siblings. This reminds me so much of Luke right now. The way he's leaning over and all. It's unbelievable to me.
Thanks so much Adam. I'll be checking your blog often!!

Monday, June 9, 2008

Another CMS family found us...from Australia

Hi blog fam...can you believe it?! Another CMS family. I love it! They are from Australia and have a son named Harry that is Eleven years old. He's got the epsilon defiency.

I am so elated to have people contact me! Sarah (the mom) told me that he's doing great. She said he seems to get stronger every year. Same symptoms as Luke when he was younger...poor suck/swallow, etc.

It's amazing! here's some pics. Beautiful OUTBACK family I must say. I can't wait to meet up with these people someday. Of course, once again...we will go there!

11 year old Harry below

Harry is on the right in both of the family pics above and below. Isn't he adorable. And the family!

Random Luke video...see Luke walking with one hand

New random video of Luke. It's actually worth watching. There's a big surprise in Luke's next big milestone. Love you blog family....desperately.....A.