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

These things are lethal!

Hey everyone,

Who needs a security system when you have small hard plastic dinosaurs on the floor to stop a 300lb intruder in their tracks right at the door!!

This freaking miniature dino/creature/animal almost about killed me one day last week. And yes, I was barefoot!

My friend Krista and I had this conversation a few months ago and discussed that all the small toy cars on the floor could stop anyone in their house from walking forward. So funny!

Luke's newest thing. Small hard plastic figurines. Preferably extinct animals. I didn't take a picture of the long necked dinosaurs! They were all over the place.

He had to hold his Tiger pre and post surgery. Now, he wants to go to bed with one. These little things are lethal..I'm telling you.

Ok..had to share. Happy Sat!
A

Luke's Hernia surgery went great

Hey everyone,
Luke did great. We are home and he is slowly falling asleep as I type. I'm about to go in there and attempt to take a nap myself.
The hospital was so kind and gracious. Dr. "H" did everything we wanted and they allowed us to do more than we asked. We were impressed and relieved.
Luke had hernia surgery on both sides and he's got 2 little slits right above his boo boo's.
We are staying on top of the pain meds as we don't want him to feel any pain the next 2 days.
I'm off to bed. Love you.......and for those special notes and prayers....we need them.
Hugs,A

Luke's 1st family reunion

Hi blog fam,....we went to the Hughes family reunion today. Well, I call it reunion but they actually do this every year. It was quite fun. (I was surprised!) We've missed the last 2 years because of Lukester's medical issues, but this year..whooohooo Luke is doing great. (btgog)

So...we went. It reminded me of the Lake Texoma days at the Lake when I was a kid. We would go there every 4th of July (that was our family tradition). So, I was appointed the photoggy and I offered to take a full family picture. Everyone was thrilled. You'll notice I'm not in it. (the downside to photography)


The Texas location was somewhere past Valley View, Texas off Lake Ray Roberts. Translation: In the sticks.

The fun part was they fry up croppy and catfish every year. Affectionately called "A fish fry".



They also had an Easter egg hunt and Jonathan and Grandma Betty took Luke to find the goodies. Luke's eggs had a ball, a plastic dinosaur and a penny in it. So fun.

The below picture is Luke's granddad and great granddaddy. *yes, I'm kicking myself for not getting that 4th generational picture. Don't get me started on this. I'm wanted to cry when I remembered halfway down the road after leaving.


In sum, it was fun. Luke did great right up until the very last 30 minutes and then he just had a meltdown. He gets that way when he's over stemmed. So, we departed quickly and he cried for about 10minutes in the car. Poor pumpkin. He just can't handle all those people all at once. (note to Luke from mommy: it's ok baby, momma/daddy understand and we will always support you when you feel overwhelmed) Takes a lot for a child to be isolated and then bam....dropped into a huge crowd.

Ok...so, here you go. Enjoy
Big hugs and Happy Easter......A

Happy Easter lolli pop kid

Hi..Luke above. The sun was a killer. Note to self: Don't wait till 10am to shoot. Oh well. We got some cute ones. Did the photoshoot today with Lulu. There are some really great ones. I'll post on a slideshow soon. This just happens to be a few that he's smiling! Of course, we set this great composition up and he decides to make that open mouth face. Yep. My baby frustrates me.

At any rate, stay tuned..more to come.

Love you,

A

Garden fun

The bluest eyes in Texas....

Many of you have emailed about my photography. I am a photographer and love taking pics of Luke. (as you can only imagine)

Here's a glimpse. You'll see Luke splashed all over my website, Click here: Andrea's website

Luke and Kate

My friend Lori has a daughter named Kate. They live in our neighborhood. Luke has a crush on Kate. They stare at each other and Kate smiles...Luke looks away. A man in progress.

Of course, we will teach Luke to be a gentleman and bring her flowers from our garden someday.

We have our weekly walks and this is Luke staring at Kate above. So funny. I think they both have beautiful blue eyes. They'd make pretty babies. EEEHK! Did I say that? Crazy. No way. He's not allowed until age 30. No way Jose!

Happy weekend loved ones. This weekend is "BORING". A good thing.

Surgery date is set

Hi,

It's me. Kinda gotten out of my funky dunky. My post title is in honor of Ericka. We have this 'thing'. We have started this "I'm going to Chicky feelayhaydaymaydoreeay". Not sure where this has evolved but the word is getting longer as the days go past. Cracks me up.

And then...there's Lisa.

We danced in this hair supply store together at the front counter. We had a moment. The music was playing and it just happened..we started rocking out. The clerk looked up and Lisa stopped dancing. I didn't. And Lisa says "your supposed to stop dancing when people stare". And the young clerk says with her back turned to us "Not everyone has to stop". Totally craked me up.

Lisa did my hair today. I love it. I'm ready for Spring. Or at least my hair is. :)

1) UPDATE on Luke's BOO BOO's:
His surgery is scheduled for March 26th. It's been knocked around a few times but I'm hoping this will stick. More to come on that front.

Everyone has sent emails inquiring about Luke and I wanted to blog it.

Ok...so? How is everyone? you doing ok? Blogging can be lonely at times. You blog and then you get your few comments and then you think...who am I blogging for? oh..that's right: ME, my family and then Luke someday.

I feel so privileged by anyone else that reads about our seriously dysfunctional life.

I love you bloggies.

I so do. Even if you don't stalk me. I just love blogging. Such a release of emotional pent up energy.

Have a good night....,
A