Angel Kiss...

Hi fam..if you haven't noticed..it'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.

Enjoy-----a

Expectations...

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 yet...church! 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 thinking...wow! 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 BAM..here 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.
Andrea

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 video...to 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

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 here....it'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 involved..it 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

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 time...it'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

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.

So...here 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."

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!!

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! Ok...so 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.

First plane ride for Luke..by default! lol

Hey Blog family! We went on vacation this past week.
WHERE DID WE GO? Berlin, OHIO -------------AMISH COUNTRY!

Yes, the AMISH countryside. Why did we go there? We visited Krista Kay. My very first friend that I ever had at 2-3 years old! We've been friends for a long, long time. She actually has a blog as well and recapped our trip. If you want to read her details....click here: Krista's Blog.

To sum it up...our trip was miserable driving there. Literally. We gave this trip ZERO thought and should have!! I'm pregnant and Luke is 2.5yrs old. Yep...sums it up. So, after getting there and finally settling in....Jonathan/I decided for me and Luke to FLY BACK. Seriously! Like...on a plane. We were both really nervous for Luke to fly and we called the Pediatrician to confirm if she thought he'd be ok. When she asked me 'why are you flying back?'. I responded.."to preserve our marriage and sanity". Enough said!!

Luke did amazing on the plane. I was so thrilled. Our little man can fly! whoohooo. Jonathan drove in the day before and got home the same time we landed in Dallas. It was perfect timing and we were all happy.

So, recap of the trip: After the drive up to Ohio....the trip turned out amazing. I got to see Krista and the kids/family and that was so fun. The kids were sooo, sooo, sooo good with Luke. Krista..you have done a great job raising those kids girl! They are so polite and compassionate. It was very touching. Krista's house is gorgeous. I was envious as we could never find that land for a house here in Texas. It was the most gorgeous house and property I've seen in a long time. Wished we lived there!

Overall, we had a great time and loved the Amish country. Blog family....that was an experience. The Omish people are like watching the 1900's in live action. Seriously. They wear these dresses with bonnets, men with beards, horse and buggies....etc. Crazy strange to us civilians that live totally in the 'now' and 'present' technology. The Amish do not like pictures taken of them so I was forced to sneak a few from afar in. You'll see 2 little Amish girls below strapping up their horse/buggy. Also, I took one from the car you'll see below as well.

I loved Berlin, Ohio. It was the most charming little town and so pretty. We got to eat fresh fruit that was to die for, homemade Amish cheese, jams, country bisquits, etc. It was so fun to eat such fresh food. Jonathan was in heaven as he found an Amish Beekeeper and went to his Amish farm to buy some bee equipment. It was so neat he went out there 2x. I loved it. Also, Krista took me to a real live Amish farm where an Amish lady named "Kate" had a beautiful green house with fresh flowers and plants that she sells. These Amish have a million children! They were scattered all over their farm property and at some point we saw an Amish boy asleep in the grass at the farm entrance! I was freaking out! So fun.

So...that was the trip. It was so fun and I was thrilled to spend some mommy/kiddo time with Krista. Things sure have changed in our friendship! We've gone from country bars to late night Whataburger breakfasts, to raising kids and in bed by 10pm. LOL.

Ok blog family. I'm so sorry to cut this short. My blog time has been limited with me working so hard. I'll try to blog way more this week.

Much love and so glad to be back.

P.S. I have gifts from the Amish country for my BLOG SITTERS! I hope they love it as much as I do.

Big hugs!!

Fun pics below! Our one and only family vacation picture!

Amish kiddo's with horse/buggy
Jonathan/Luke at Charm Village
Krista Kay
Amish driver in front of our car!

Another CMS friend found us!! Wichita Falls, Texas

Hey blog fam,

Here is their new blog: Kyla's blog

Guess what?!! I was emailed a few days ago by a MOM from Wichita, Texas that has a little girl named Kyla that is 6 years old. She was diagnosed with the EXACT GENE MUTATION as Luke. (the Rapsyn gene)

That makes 2 kiddo's that have the exact mutation. Kyla from Texas and Nathan from France! Wowsie!
I talked to Kyla's mom and her name is Sabrina. She is 30 years old and the really amazing story is that THEY HAVE A 2nd CHILD!! AND.......their 2nd child does not have CMS! I was amazed to hear this.

With this said, we are excited that we live so close! Well, close enough to drive that is. We'll have to fly to France to see little Nathan when Luke gets older!
Ok blog fam...community, community. That's my heart for my Lukester.
Big hugs!

Picture below of Kyla! She's so cute! And the one below that is mom and her 2 girls! How fun!
Younger picture of Kyla below and older picture with mom.

Luke is loving his Gait Trainer now!

Happy Momma's day

Hi, I was going to give you all a glimpse of my baby bump in live color action. However, I'm so huge...I opted for my baby shadow. Enjoy-----oh, video below of Luke's gift to me. Hugs,

love, fatty

Happy Momma's Day blog mom's! Love you much-----A

Below was my gift.....so fun!

Glory to God

Hey everyone, here is Luke throwing basketball hoops. He's hoop'in. Dunk'in it. Throwing it down!

This video is for LULU as it has a ton of meaning. Luke was born with contractures on his hands and the doctors were telling us he had this 'other' diagnosis when we were at Children's that would cause his hands to be contractured for life.

I remember stretching his little fingers every day in the NICU (as the therapists taught me too) and I was praying as I was stretching that little Luke's hands would be healed. During prayer time one night on the way home from the NICU, God said to me "not only will Luke's hands be healed..but he will play basketball and I visioned a basketball in his hands wrapped around it...all healed". I freaked out as I really felt the Lord tell me this.

I went home...told my few select friends, Jonathan and mom.

Last year, mom bought Luke a shirt that had a basketball on it and it said "Glory to God". She said "Aner, our baby's hands are healed and I believe".

Here you go Lulu. Jesus healed my baby's hands. Oh, and the really cool thing is...Luke loves to watch the neighborhood kids play basketball across the street. Hmm, only the Lord people! Huge hugs blog family, I love you,
Andrea

To God be the Glory....

P.S. I know, I know! It's isolated. No pants on Luke. I need help on this. Don't be hate'in!

Painful but necessary PT sessions..

Hey fam, a long overdue update on Luke. We had PT this am and boy..what an emotional drain on the momma. It's so hard watching your child cry and cry...knowing it's the best for him.

Uggh! I hate it.

At any rate, what you are about to watch is a session therapy GONE GOOD! It took a few crying tantrums...but he eventually got over it and realized..."momma ain't saving me".

The contraption you are about to see Luke in is called a Gait Trainer. It's to help him learn to WALK. In the past, he's hated this thing. But, now..he has no choice. He's about to be forced into it daily---every morning to be exact for 30 minutes. Jonathan and I are really cracking down and not allowing his tantrums to override our desires for him.

I want my baby to walk..in a diaper..with cowboy boots on. Is that so selfish? LOL.

Seriously---we know he can do it..we just need to crack down and be disciplined about his will.

Enjoy---or hold your ears. Whatever the case. Hugs, A (more to come)

The Mayo clinic call

Hi, so excited. Real quick. Just got off the phone w/our pediatric neurologist at the MAYO clinic. She was thrilled to hear about the new baby. She said that there is no need for an amnio. She said they can test the baby's blood at birth and have the results for CMS back in 1 week.

She said that if the baby has CMS that it will be very apparent at birth. Even if I didn't have gestation diabetes this time, this new baby will present the symptoms of global hypotonia, etc.

And...they can give mestinon AT BIRTH and it works amazingly. Meaning blog family, if by God's grace all is well and the baby presents CMS...we can bypass a TUBE! SURGERY! EVERYTHING. I may even be able to breastfeed with mestinon.

I want to cry. It's the most hopeful news ever. I love Dr. Selcen at the Mayo Clinic so much. She's from Turkey and she's so kind, so attentive and loves our little Luke. She's just so encouraging. And you know why?!! Because this lady sees it all!! She and Dr. Engel smiled at us when I asked about having Grandkids with Luke. They both looked at me and smiled and then proceeded to tell us about other patients like Luke that do great.

I say this with humbleness...God's grace. His Grace shows up mysteriously in many ways.

Love you again blog fam,
A

Luke's school meeting for his 3year...

hi,
busy day. I had a meeting with the school district for Luke. He's transitioning from the Early Childhood intervention program (a state funded program that provided home care for OT, PT , dietician services, etc) when he turns 3.

I was so amazed and relieved to hear that because we live in a smaller district that Luke will be so taken care of when he turns 3. We will meet with about 10 people (not kidding) in August and work out a school program for him that will customize to his needs. Some of it may be homebound care but the great news is that the state takes care of all the funding!!

I'm so excited for Luke. More to come on that front.

In reference to me, well, pregnancy clothes are out and the below picture is affirmation that I probably should not wear my hair like this ever again. Note: no makeup. Probably not the best decision for the day.

My concern: THE BELLY BLOAT IS COMING ON STRONG. I'm terrified at how big I'm going to get. It's only 7.5 weeks and I look 3mths pregnant! Very worrisome.

I look hideous today. I made Jonathan take the picture and it's not a great angle.

LOL

Enjoy

Update on me....baby #2...yes, it's true

hi,

well, got a prayer request. Got another little secret brewing that a few people have guessed. (Paula...mom's BFF)

Longstory short, got an appt. next Tues.

why? wanna guess?

Here's some hints:
1) I can't drink more than 1 cup of coffee per day (utterly painful)
2) I have to scale back on sweets
3) have to pee a lot (God I hate this part)
4) Luke pats my tummy (strange?)
5) Jonathan's in denial until these past few days
6) I'm nervous
7) small family(some don't know yet) stunned and quiet :)
8) my friends are like "wow".
9) I'm fat.
10) I know, not planned again. Are they ever planned in my family. Not.

At any rate, the big appt. is next Tuesday to see if there is a formation and good signs that all is ok. Just need prayer for whatever we hear. Period.

Sorry blog fam to be vague. But, just want to get next Tues. over with.

Hugs and I'll post exactly my thoughts after Tues. In the meantime..pray for God. His will and timing.

Hugs again..miss you blog fam. I'll stalk you more often. Things are getting more normal after the big roadie trip.
A