Luke and Congenital Myasthenic Syndrome

Happy 6th Birthday our sweet gift from God.

2011-11-21T05:31:00.000-08:00

To God be the Glory. There are no other words we can say today. Lord, thank you for today. Luke...you give us pure joy. You are the most precious child and it's a pleasure to love, raise, laugh, play, walk, run, eat, drink,read, and breathe with you. We love you desperately. Mom/Dad and Hannah bow.

Luke lost his 1st tooth!!

2011-06-29T04:37:00.001-07:00

Hey blog family, guess what! Luke lost his 1st tooth today! It was hysterical because I kept saying to Luke "Luke, go awwwww". He finally opened wide and I said "momma fix it". I immediately pulled it right out. It literally has zero 'tug'. LOL! It was ready!

My favorite part was when he realized I had his tooth in my hand he stared at it and then ran to the nearest mirror. It was Hannah's mirror that was hanging on the gate. He stared and stared. Then, an hour later while eating a muffin, he went back to the mirror and watched himself eat his muffin. LOL! So cool. I told him the tooth fairy was coming but he literally had no clue what I was talking about. We've never discussed the tooth fairy!! I'll have to work on that. In the meantime, enjoy!

I call this video "TOOF Luke". (in honor of Ericka!)

Our first piano recital!

2011-06-07T04:36:00.000-07:00

Piano Recital! Many of you know that Luke and Hannah are in piano lessons. Luke/I have been in piano lessons for quite awhile and we decided to go ahead and put Hannah in the lesson mix on Thursdays. My children are so bright!!!

Luke did amazing!! His piano teacher said "Luke may very well end up just being that amazing performer when there is an audience". We were in awe. He will fight us playing goody goody stop stop during practice. it's maddening at times. But then when there is an audience my child plays goody goody stop stop all across the key board!!! LOL! it was amazing!

Hannah bow "Bowed" and played one note. ADORABLE. I actually played a little rendition of popcorn and peanuts and I don't have this on video. (sorry) But, my teacher said I played flawlessly. Like son Like daughter Like momma. LOL! They were amazing!

If you turn up your volume you will quietly hear Luke playing. It's precious! Love you!! Until next time..Practice, Practice!! :)

I call these pictures "Piano cuteness".

I call the video "Piano perfection via Luke".

note: They bow before and after. :) Adorable!

Luke's Preschool graduation!

2011-06-04T04:34:00.000-07:00

It's here my bloggies. Big boy is heading to Kinder! Can you believe it?

I showed up the last day and took Hannah bow with us! OMEEEGRACIOUSNESS. This child loved it!! Can you say Hannah bow Pre-K! She will love it.

Luke was so excited to see me and said "Momma, sit on the rug" as he patted the rug next to him. I immediately walked over there and he got in my lap!! So precious! I so loved it.

Ms. Bird (Luke's teacher) gave him a book and hugged him and said her goodbye's as he's heading to Kinder to a whole new teacher/classroom. Really made me sad!! He's been there since he was 3. :((((

So, off to big boy school we go next year. Here are some pictures my nurse/attendant took of us that day. I want to point out...I looked amazing. :)

Here you go! Love you! I call these pictures "Goodbye Pre-K".

Please note: Hannah bow crawled over and sat on the rug with all the other kids. She sat right in front of this little hispanic boy and would not leave. She just sat right in front of him (away from the focal point where the teacher and kids were looking) and awkwardly stared at him the entire time. It was hilarious. Poor kid! She definitely made it obvious he was special in some way. All the kids were staring at them both. LOL!! Way to go Hannah bow...the uncomfortable awkwardness with people will get better as you grow older. Just like her MOMMA!! LOL!!

The Hannah bow stare down below. LOL!! THE ENTIRE TIME PEOPLE!! LOL!!
Another view of the Hannah bow stare down...look closely below.

Below Luke is dancing during the song. His teacher has told me he has always done this from day one. He dances round and round while the other kids just stand there on there little color squares assigned to them. My son however....dances around. Yes, we strive for normalcy...but I gotta tell you...I'm ok with Luke dancing. God is good...period.

Kiss da momma!

2011-02-14T04:33:00.000-08:00

Ok...This is truly a video that is heart melting. My baby kissed da momma on the lips for the first time in his life!! At 5 years old Luke decided to take my face, angle it right at him and KISS ME and MAKE THE "MMMMMMMWUA"> Sound with it!!!! LOL!!

I was sitting there and all the sudden he came up, grabbed my face and intentionally kissed me on the mouth. It was adorable. I about died! After he got the reaction from me I immediately said "Heather..you gotta get this on video" and threw her my phone literally! Hence why the sideways view. Dang those iphones!

The funny thing about this day is that he did it over and over. And, he even tried to stick his tongue in my mouth!! LOL. I kept my mouth shut tight on those! LOL. But, after the day was over...all DONE. The next day I said "Luke..give momma a kiss". He ran. So funny!!!!

So, I had my day of glory. Loved it. Love my baby boy. I call this video "MMMMWUA" in Luke's sweet voice.

My day

2011-02-08T04:31:00.000-08:00

I just needed to post about how much I love my son. He's my world. He's perfect to me. And I love him so much.

It's been a very hard week. My Luke grounds me.

Love you,

P.S. If you can, please pray for my BFF. I love you Deb. God is the only one that will never fail us. For this, I am thankful. Love you so much.

Cabin fever ended we hope!

2011-02-05T04:31:00.000-08:00

I know. I affirm you. I look amazing in this light. Jonathan took the picture. The kids were vegging out with me and watching Sesame Street. It was so sweet. They just sat there real still and let momma hold them tight. At one point I tried to get up and Luke said "NO" and hugged me tighter.

Insert MELT HEART. Of course, I stayed. :) GLADLY!

Here is the ONE picture of me during our staycation. Luke got out today and walked; Jonathan went to work and we ended the day with me/Jon going out to eat for a bit by ourselves. WE DROVE..it was amazing.

The first picture below I call "Snuggle momma".

The bottom 2 pictures were taken 2 days ago when the kids were begging to go outside and I had to tell them it was too cold. I call those pictures "outside".

Hugs!

Snow staycation

2011-02-04T04:29:00.000-08:00

I call these pictures "SNOW GO". Please....GO.

As you can see, the babes love the snow. I had to get a few shots of this for Luke & Hannah bow because if God keeps them in Texas for as long as me/jon..then they might possibly not see this again in another 25 years. At least that's how long it's been for us!! WOW! Isn't this insane!

Snow day and recovering

2011-01-11T04:28:00.000-08:00

Well, Lukester is feeling better. He has not coughed as much today and I totally give God the praise. Thank you for praying. We need a few more days of ABX in Hannah bow and I pray she feels better. Man...this has been 4 weeks of ****!

That said, todays' theme is "Squirrel in the snow". Luke said this about a cajillion times! LOL.

We bundled him up right outside the door while he played in the snow. Inside/outside fashionable wrapped in blankets. :)

I call these pictures "Snow Globe".

P.S. Pray for Hannah bow please......

Me and the babes! (Congenital Myasthenic Syndrome)

2011-01-10T15:51:00.001-08:00

I was blessed with the Shuffields coming in town! We had the most amazing time ever! Here's a sneak peek of Tisha's pics! I love finally having pictures of me and the kids!!

This is one of many that I adore. I'm currently blowing up now and printing wraps for the walls next week. Can't wait to get them in.

Thank you Shuffields..I'm in love with them!!! LOVE YOU!!

Luke's recital

2011-01-10T15:50:00.003-08:00

Over the last 2 weeks Luke has recited "Twas the night before Christmas" to me. It's the first page of the book we read and it's sooo cute. I've desperately tried to get this on video and in our failed attempt to get it all this video totally cracked me up.

I call this video "NOOO, NOOOO, NOOOO...THANK YOU".

Goal for 2011.

2011-01-10T15:50:00.001-08:00

Time of day: 3pm.

Shirt of choice: His jammy top from the night before.

Shoes: His monkey house shoes.

Temperature outside: Have no clue.

Age of kid: 5

Where is his sister? No clue.

The million dollar question: What do I look like? No comment.

Judgement: go ahead...I'm numb and exhausted...hey, at least I'm the historian here.

Goals for 2011: Be a better mom. LOL! (enough said)

Luke's first official Christmas present!

2011-01-10T15:49:00.001-08:00

Luke gets it this year. It's amazing, awesome and more awesome. We are thrilled.

That said, Luke struggles with 'new' things. In the last several months, He will embrace a 'new' thing if we give it to him for a moment. But then, he'll start freaking out and say BYE, BYE _____(insert item here) and then proceed to throw it across the room and run, hit, knock things over, etc. It's very frustrating for us as a family as we truly want to see his excitement and we **know** that he's excited. He just gets overwhelmed with the transition of having a new item. Does this make sense?

So, our new Christmas game plan. Dispatch "Mindy". Our speech therapist. She's amazing. She's attentive, gifted and truly **cares** about the well being of our child with the 'little' things. She goes out of her way to help us as parents. It's a blessing from God. I give Him the glory as I truly realize after today how much the little things mean to our family.

So, this video is your Christmas present Mindy. I did not give my therapists anything this year. Why? I honestly did not think about it until just now. Wow. Bad mommy. At any rate, I hope this blesses your Christmas holiday.

**If you are going to watch this video, you must watch it until the very end. It's soo key to see the end result. And yes...HE KEPT calm after the video stopped rolling. We are so excited!! Love you Mindy and thank you for **caring** about our dinky little dysfunctional family.

Piano!

2011-01-10T15:47:00.001-08:00

House is spotless. All things are in place. Christmas lights are on. Food is bought. Presents are wrapped and most importantly...Laundry is done! YES..it's true. AND THE DISHES! :)

A very happy momma.

We are slowly feeling better from our sickness and by God's grace and mercy...we will all be well on Christmas day! THANK YOU JESUS.

Thank you Lord.

So...behold, my sibling piano video.

I call this video "Pester piano Hannah". She loves to pester brother and stick her index finger in his face at all times. It's hilarious. Notice Luke desperately trying to control himself from freaking out on her. LOL!

Love you blog family...May your Christmas be blessed.

Luke's OT therapy

2011-01-10T15:46:00.001-08:00

Because I've been a slacker blogger, I'm trying to catch up to some fun events that happened over these last few months.

One in particular is Luke's progress in PT. (physical therapy). It's been amazing to watch and we are so thankful for his therapists. We are in awe of what they can get Luke to do! it's really pretty awesome.

That said, here is a glimpse of his hard work. He's our love bug. We are desperately in love with him and his accomplishments. I guess mainly because we think "wow..it's a miracle". Everytime.

Behold..Lukester! I call this video "Mountain furniture..and Luke".

Hugs!

Luke's birthday week!!

2010-11-15T04:14:00.000-08:00

Forgive me bloggers! I've been really bad about updating!!

This week is Luke's birthday week! He turns 5 years old. We are so excited and thankful for our little man!!

For the moms/dads that have found this blog and have children with CMS...please message me...I would love to add your picture on our blog!

Much love and be back soon! MOM

Met another CMG friend!!

2010-05-11T06:44:00.000-07:00

Her name is Lauren!

Her blog address: http://laurenet0112358.blogspot.com/

She's a true delight!!! Thanks Lauren for emailing!!

Happy Mother's Day

2010-05-10T06:43:00.001-07:00

Happy Mother's Day to my momma+my mimi+my momma colleen+my MIL Lisa+my MIL Betty:

I love you!!! I pray all my sweet friends and blog friends have a fantastic Mother's day.

Below are our sweet babes that bless us abundantly!!

It takes a Village

2010-05-10T06:42:00.004-07:00

My house is Grand Central Station. Seriously. I'm not kidding. When I tell you that my neighbors think we are having a party everyday because of the cars outside, I'm so not kidding.

It's insane.

So, Lisa Allen took this picture because we were putting on Luke's shoes.

It seriously takes a Village with my kids. A HUGE VILLAGE.

The picture below is called "Hannah's back". (lol) Ok, made me laugh. Just thought I'd throw you for a picture title curve ball. :) LOL again!

Blast from the past

2010-05-10T06:42:00.003-07:00

Well hi happy blog family! It's blast from the past Friday again! This time: LUKESTER!

As you can see here at around 15mths old Luke was given this chair from ECI (Early childhood intervention) and what a little miracle this chair became in our home. It was a life saver for us as Luke had no muscle tone and could not sit up on his own.

So...guess what! Our ECI therapist brings in the same chair for HANNAH!! We laughed out loud because it brought back so many memories of Luke in it.

One day, as you can see below, Luke decided to sit in his "Childhood infant" chair. It was so funny to see his legs cascade over to the floor. Wow...our big boy is growing up so fast!

So...enjoy the blast from the past pics below. Note: BONUS OF HANNAH BELOW.

I call these pictures "Blue Chair".

PAST

PRESENT

BONUS! Hannah bow in the same seat now!

Have a great weekend blog family! Love you! A

My new thing

2010-05-10T06:42:00.001-07:00

Today my primary nurse (day shift) Candi said that Luke was being a little toot with his work today at school. After a mini tantrum she was trying to discipline him accordingly and then he screamed at her across the room "Candi, bananas PLEASE!". Of course, she laughed and surrendered.

Many times Candi will text me pictures of Luke sliding down the slide at school. A sneak peek just for momma.

Then, when Luke is tired he will bypass me and snuggle with Candi. A refreshing relief since it's day time and momma has to work.

So, I'm blogging this post for Candi to say "I'm thankful for you Candi".

Thank you for loving my baby boy. And, thank you for loving my baby girl.

I feel blessed you have come into our home.

Big hugs--A

My new thing

2010-05-10T06:41:00.001-07:00

Hi, it's me Luke.

Daddy gives me a bath.

Mommy freaks out on daddy because daddy will work on his computer around the corner.

Daddy says "I'm right here".

Mommy says "Kids can drown in 3 minutes and in 2 inches of water, I don't care...get in there".

Daddy and mommy get loud and scream at each other. (yes, we admit it)

So, last week, daddy gave me a bath.

Daddy freaks out when I walk in his office naked and dripping wet. I don't need help anymore. I just get out when I'm ready.

Mommy freaks out again. It's just my new thing.

Mommy calls this picture "bath legs".

The parting of the sea

2010-05-10T06:40:00.004-07:00

I love the old testament. It's my truest love. I reflect back on it so much because it awes me. If that's even a word. "awes". Whatever the case, I'm inspired and moved by God's great word and His greatness in this historical event.

Can you only imagine? Blows my mind.

That said, it was a must for me this past weekend when all alone on Sunday. I had to put a "part" in between my kids because Hannah loves to pull Luke's hair and the drama can be too much when alone with no help!

So, I broke down the gate near the kitchen and drug it in the living room. I was done. At some point, I had to go to the bathroom and eat!!

So...behold, the parting of the living room! LOL!

Personal note: God is in all and over all. May I teach my kids accordingly and with great grace and love. God, I so pray this. I want them to know Him.

Exodus 14:21-23
21 Then Moses stretched out his hand over the sea, and all that night the LORD drove the sea back with a strong east wind and turned it into dry land. The waters were divided, 22 and the Israelites went through the sea on dry ground, with a wall of water on their right and on their left.

School field trip

2010-05-10T06:40:00.003-07:00

Well, we did it. I did the parent field trip thingy and Luke did the ZOO.

Both equally a huge accomplishment. I swear..my child is SOO ME!

So, Luke did great. He had a huge sensory meltdown for the first 45 minutes. But, by God's grace, we managed thru it and thank GOD for my nurse CANDI! She's so intuitive and was so great during the whole process of him freaking out. I really needed this co-support for sure.

He finally got it together and then we browsed the zoo. It was so adorable to watch Luke so curious.

I, in all my cuteness as you can see below was really not into the whole parent chaperon thing so I opted to just take care of Luke. A parent tag along I guess you would say! LOL. I really wanted to focus on Luke. Which was seriously necessary since our last zoo visit was nothing short of a nightmare tagged with a crying fit all the way home.

So here goes! I call these pictures with the exception of a few that needed it's own title..."YAY! WE DID IT".

Place: Frank Buck Zoo in Gainesville, Texas
LUKE RODE THE BUS on the way there! He loves the bus!

His teacher Ms. Bird is waving at me above the giraffes! So funny!

The monkey's were seriously a 'pack' and it was funny to see them face me all at once! LOL

Above is Luke's Teacher Ms. Bird . We love her! Curly blonde smile lady here. Love her! Can you spot Luke?

Seriously...the picture above is my favorite picture. I call this picture "My Big boy".

The above picture in all its sweetness with my boy...is called "Fat arms".

Ok, hope you enjoyed! that was our Tuesday! love you! Andrea

Purple dino

2010-05-10T06:40:00.001-07:00

Well, Luke's first official neb treatment SOLO. For the last 4.5 years he refused to let us mask him during his neb treatments. So, we've been holding it in front of him and needless to say it's been seriously time consuming.

So, one night I was exhausted. I thought, Ok..I'm going to try it. I said "Luke, look...it's a purple dinosaur". He laughed and said "purple dinosaur". I said, yes! Purple dinosaur. At that point, I strapped it on and he loved it. He laughed and allowed it on the entire time.

So...guess what! He's officially big boy with his nebs now. The nurse loves it as well!

So, I call these pictures "Purple Dino".

Note: I thought not including my voice during this video below would be more fun to watch Luke. But, after replaying the video with no vocals and just quietness...I realized immediately that I actually entertain myself more than I thought. This video is boring with no vocals from momma. So, enjoy the no vocal video. I most likely will not do that again as having no vocal drama is just not my style. :)

Blast from the past

2010-05-10T06:39:00.001-07:00

The following picture was taken in Sept. 2007

I called this picture "Tubby time".

Now, this is taken current. april 2010.

I call these pictures "Tubby time take 2".

UPDATE ON HANNAH: Feeling so much better!! She's doing great. She's even starting to crawl today! whooohoo! Thank you so much for praying!

Monkey house

2010-05-10T06:37:00.000-07:00

Over the last few days, Luke has been taking his monkey and stair stepping him up this tree you see below in our garden. So, I casually texted Jonathan on the front porch and wrote:

"Puppers wants a monkey house in the tree."

So, a few seconds later Jonathan texted back.

"Daddy will take care of".
Then, one day later...this is what Jonathan created FROM SCRATCH. No kidding. He used all the sticks, leaves, etc...from our yard/backyard. The only thing from the inside that Jon used of course was his infamous fix all...super glue.

So..here you go. Behold..."Monkey house in a tree".
Please note: (insert, I erased this part and if you missed it..sorry!!) Hugs..yours truly...the faithful blogger Andrea

P.S.S. Luke loves it. Of course, I take full credit for the idea. :)

I call these pictures "Monkey House".

Luke, my sweet baby boy. Oh...how I love him!

Can you see the 'dang monkey'? He's under the roof getting cool. :)

Luke also likes to give Monkey a bath. This is our afternoon ritual as well.

Luke watching daddy build the monkey house!

This last picture is me testing my camera out. It's jumpy on me right now. Sending it in.
Hugs, love you, A

Our big boy is officially walkerless!! wow!!

2010-03-31T04:15:00.001-07:00

I can't even write. That's how much emotion this gives me. I can't even come up with the words. I'm overwhelmed with emotion. Thank you Lord for today. Love you, A

Paper shredder party

2010-03-28T14:27:00.001-07:00

This is what happens when you rock sister to sleep and then blog...

Total time under no parental supervision: 14 minutes...give or take a minute or two.

I call these pictures: "spank the butt".

**we keep our paper shredder by our large trash can in the laundry room area. You can see where Luke snuck off and did this without me knowing. And, he was as quiet as a MOUSE. I'm not kidding!! The kid knew he had to be super duper quiet.

Happy Easter upcoming!

2010-03-13T19:43:00.001-08:00

Ok...here's my big easter bunny. He's doing so much better. I can't thank you enough for praying!

We love him so much and when he's sick..we all suffer. Love you.

And..great news! Mimi is out of the hospital. She's very weak. So please keep praying.

I call this picture: "Waiting on the camera click". (a long story...but everyone in the house will understand)

More later!

My little walking and fake falling boy!

2010-02-17T19:42:00.000-08:00

Some of you might remember Luke 'fake coughing' a few years back. Well, this child is seriously starting to develop the cutest and most theatrical personality. It's so adorable and funny!

I love it blog family. I want my child to LAUGH a lot. Just like his momma and daddy. We are a family that loves to laugh.

Hugs and enjoy.

I call this video "fake falling".

Merry Christmas blog family! 2010

2010-01-11T19:29:00.000-08:00

Jonathan, Andrea, Luke 4yrs and Hannah 1 yr!

A moderate trim

2009-12-11T19:37:00.000-08:00

Haircut for Luke...cute little bangs for Hannah bow. It was Hannah's first haircut and Luke's first Toys R Us salon haircut.

Ericka went with me. It's all her fault they got their haircuts. :) LOL! (inside joke with Aunt Lisa...and yes Lisa, I affirm Ericka..I lie) Love you.

I call this picture of Luke: Bobblehead.

I call this picture of Hannah: Baby girl got bangs

Words cannot express!

2009-12-11T19:33:00.000-08:00

Both Jonathan and I have cried this week. Words will never,ever express the gratitude we have for God and the blessing this child has been to us. We are in tears about it and can't thank everyone enough for praying for our Luke. God is faithful..in every way. We love you Lord. We love you our sweet Luke. We are crazy and desperate in love with you sweetheart. Love, Mom and Dad

I call this video "WALKING".

Halloween 2009

2009-11-02T18:42:00.001-08:00

Well...we did it! Another Halloween full of decor and more decor!

Ok..As you can see, our little Hannah was a fairy princess and Luke (our wonderful CMS CHILD) was a HOBO. Chandler and Delilah (our grandkids) were a pirate princess and a fireman! So cute!!

I cooked over the top Chili (I put italian sausage in it and that's the secret ingredient!)and everyone loved it.

I just felt a great sense of family and love on Saturday! What a blast!

Pictures below! Enjoy. P.S. Lisa decided to put on Hannah's Tutu on her head! LOL! I call that picture: freak! LOL!

Happy Halloween !! Enjoy!

Our little Hobo....Isn't this Adorable! Yes..my child is smart and wonderful. He's living out a productive CMS LIFE. This is LUKE BELOW! he knows his alphabet and numbers!! He's amazing!!

I love this picture below!!
Baby girl....yes, I know..over the top adorable!

Attempt to take a family picture inside....yes, here we are!

Our fun house!! Jon did a great job!

Lisa! Freak!!

Delilah and Chandler (our grandkiddies) Over the top cute!

Daddy and Hannah

A classic picture! From left to right..youngest to oldest!

I look amazing below. LOL! My fav. pic to date!

Lexie/Jonathan and the kids. (for those whom don't know...Jonathan is my husband's oldest Son) This is Lexie (his wife..my nannie) and the kids!

Found another CMS friend!

2009-08-15T04:19:00.000-07:00

Liz contacted me via email and started her own blog! Another CMS friend! YAY!

Here is her blog address: http://cmsliz.blogspot.com/

And I love, love that our cms friends send pics! Liz..your beautiful!

Luke-Tricycle!

2009-05-27T06:51:00.001-07:00

Hi loved ones, love you.

The following video is of Luke and his tricycle. The school allowed me to take this home with us to practice.

If you watch the video all the way through you'll get to listen to the high screeching pleasant sound wail that I hear all the time when I try to get him to work!!

Enjoy! Love you.

I call this video "Push".

Swine Break 09

2009-05-06T06:52:00.000-07:00

I heard this title on Facebook! Totally cracked me up.

With Luke not in school......I am craving quiet time in the am. I took this video a few weeks ago to be funny! Little did I know it would not be funny 2 weeks later....Lord, get my son back in school...I need the relief. I hear "readeee" about 100x all before 9am! LOL...

Love you blog fam----be back with some fun pics!

I call this video "Precious Morning"

Well hi, how are you?

2009-04-28T06:54:00.000-07:00

Ok, here is video of Luke. Stick with it. He gets better and better with his greeting.

My son is like his momma. He loves to greet. I'm grooming him for greeting in a church lobby!! LOL. My favorite thing to do in the whole wide world is to greet in a church lobby. Give me a badge and I'm so there. I love it. This said, listen carefully. He starts out by saying "Hi, how are you". Then...progresses to "Hi, how are you doing?". So adorable!

Here's my baby. I know..he's big boy. But..always my baby love.

I call this video: "Hi, how are you doing?".

Hannah (Luke sister!) lounging out!

2009-04-25T06:55:00.000-07:00

Hi...I'm homebound. Can you tell? This video is so adorable. See sicky video below as well of the kids. My sweetie pie babes.

I call this video: "Hand Head".

Luke eating by himself! whoodeehooo!

2009-04-25T06:54:00.000-07:00

This is Luke eating guacamole by himself! Luckily the guac. sticks to the spoon really well making it very easy for him to feed himself. :)

Our big boy! I call this video "Eating with a spoon".

Monkey boy..my little mister!

2009-04-23T06:56:00.000-07:00

Ok....Luke story:

His took his little floating people in the bathtub and looked up at me and said "Ever-Body". I said "what honey?". He said "Ever-Body". I said..."did you just say EVERYBODY?!! He looked right back at me and said "EVEREEEBODY".

It's amazing. We are thrilled with his progress!! I love ya'll! fast blogging today!

I call these pictures: Diaper butt Pilates/Yoga Monkey boy

Luke walking part 2

2009-03-28T06:57:00.000-07:00

Ok, so hi loved ones. Here I am again. 1 week later! LOL---however, I so wanted to leave Luke's walking up for an entire week so that anyone that might have missed it wouldn't have a chance! I wanted everyone to see it.

So....wow.

Luke is a little walking maniac. It's a blast. He's really going fast. Lulu is here staying with us for a few days and she was really impressed today. She says "he is RUNNNING". Just like Forest gump would say. LOL.
ok..so video power blogging here. See below. Love you! A

Ok, sit down...Luke is walking!

2009-03-23T06:58:00.000-07:00

Dearest loved ones,

There will never be enough words to type the following news. It's so huge for us blog family that I literally cannot even remotely begin to write the words. Our baby is walking. Something that we've prayed for, begged for, hoped for, dreamed for, pondered for, worried for, scared for, doubted for, ---on and on. He's walking. Yes, it's true.

Luke is officially walking upright with his walker!

He's had this walker for a few weeks. I've tried and tried to get him to start walking with it. Finally today, he got right up and asked me to pull him to a stand in front of it and he took off. Luke became very GUMP LIKE. I was shocked and thrilled.

I call this picture below: "GUMP". LOL! He did not want to stop walking! ask my neighbor! A total nightmare going home!!

Also, every neighbor kid within our block ran down to us and would scream to their mom's "Luke is walking Luke is walking!". Darci's son ran in the house to tell her and Darci ran out. Just like on Forest Gump when everyone starting running behind Gump! LOL!!

Every step he takes..............literally TAKES..TAKES, TAKES my breath away.

Video below: I've watched it 10x already!

Loved ones, my eyes are full of tears. I am weepy, overjoyed, proud, crazy and passionately overwhelmed with emotion in reference to our big boy. I just want to say, "Thank you Lord". Thank you.

I love you all...A

SO MUCH MORE TO COME! I promise! Love you again, A

A lot and video

2009-03-11T06:59:00.000-07:00

Oh family. So much going on. Hence, my title above. When it rains...it drenches around here. Like..soggy wet people.

What a day. And..it's 10:30pm and not over. Hannah is WIDE AWAKE! Like....whiny awake. It's maddening. Luke is finally out and I have to wake him up in 1 hour for his zopanex breathing treatment.

Last night was scary for me/jon. Luke woke up coughing like crazy...couldn't catch his breath and for the 1st time since the Mayo Clinic we had to suction Luke. 3x last night to be exact. The night before I had to get Lulu to assist me with suctioning and I felt horrible asking her to help. She was dead asleep on pain meds and I was freaked that Luke started doing this. Jon is finally back in town from business and he came back to the cry/sick house.

Long story very short, Luke has hand/foot mouth gunk. The Dr. said he's got blisters on his throat and we have to monitor him very close. His coughing fits freak me out. Literally.....freak me out.

So, it's late and I've got to work tomorrow. My first Denise job of the year and I cannot miss it. I'm just so dismayed by Luke going to school. He loves it, we love it and yet...3rd time he's been sick since Jan. 6th. That's a lot. And..every time so far Hannah gets it. Although...it's radical. She kicks sickness so fast. I think I'm really getting a good reality of Luke's stuff taking forever to heal versus Hannah. I didn't realize it until Hannah Bean.

This said, I'm so bummed by this.

On the Lulu front, she went home early am. She was glad. I'm sure of it. I really think she was not happy to be here. The minute I got her back here and comfortable..I was heading to the Dr. for Luke and it's been non-stop damage control on the kids ever since. I've had zero time to take care of her and I feel horrible about that.

Overall, I'm thinking she didn't have a great time as her last blog entry stating she was home did not include any updates about her stay at my house. Ummm, ok? Oh....and we had a little screaming match back and forth during one of Luke's suction episodes. She told me to calm down and I told her to be quiet and not tell me to calm down.

A drugged up post op patient telling me with post traumatic suction syndrome to calm down. Not a good mix.

Ok...so, that's the skinny. Or Fatty. Whichever you prefer. I feel seriously fat these days. Gotta lose this weight. ugh.

Just pray for Luke and Hannah blog family. A small prayer will do. I just want my bambino's to be healthy.

Ok...video of Lukester below getting his breathing treatment. He's so good! He says "all dun"..."all dun" when he's wanting it to stop. It's so sweet and heart wrenching at the same time. Our little mister.

I call this video: "Breathing Treatment by Penguin"

p.s. Lulu..you left your pillow and crocks.

Love you, A

More Luke talk and Hannah

2009-03-03T07:00:00.000-08:00

Hi, good morning. Happy Tuesday. Well, it's early. I'm up. Trying to figure out what I'm going to blog today. I saw this picture of Hannah and cracked up. This was a full on body shot of her 3mth photo shoot that didn't make the editing cut. However, I love it.

Isn't she just heavenly to stare at. She's pristine. Perfect. Amazing. Can you tell we are in love. Desperate again for yet another child. (what is God doing to us with these little gifts He sends us...I swear they break your heart up in so many pieces that you can't recover. It's sublime.)

I call this photo:
"Flat on back"

Also..again, Luker talking below. He's my little talking bunny these days and it's so sweet. I love his voice. His little "no" and how I will start cutting his nails (which he hates) and then he'll say in his sweet little voice after 1 finger.."all done, all done". LOL. He's really trying so hard to communicate instead of screaming out of frustration. I can so see how my little man was frustrated because he couldn't talk. My sweet boy. I love him so such.

Oh...Not to worry...I have 2 little talkers! Hannah is coming as well. She's on her coo'ing kick and I finally got some video of it. Every time I try to video her she'll stop immediately when she sees the video device! It's cute. She's so attentive and smart y'all. It's amazing. She's super alert and strong, strong! Her 3mth well appt. went great. She's 12.4 lbs and right on target. My pediatrician said again that her tone is above average for a DS kid. She's doing wonderfully. Sigh of relief there. I want her to be healthy!! So..thank you Jesus.

Ok..I love you blog family. I love, love, love, love, love you. Big hugs, A

Animal talk

2009-03-01T07:01:00.000-08:00

Ok..you ready? Here goes: He says BYE in the end...don't miss it. We are thrilled blog family. Luke is cracking us up! I never thought I would get so excited on what a duck says. It's so fun!

I call this video: "GOOD BOYEEE". And..it's key you say this with a huge Texas accent.

Dang Monkey

2008-12-07T17:00:00.000-08:00

Hey blog family, hope your weekend was eventful.

Mine was...well, stressful. Much to say on that front.

However, on a lighter Monday note...I decided to blog about Luke's latest.

Here lately, we can't seem to lose the monkey fetish in our household. As most of you know, Luke loves these little animals. He's been so fascinated with them that in the last year he had to always have one for the car, in the doctor's office, or grocery store. He could never leave home without carrying an animal.

Well, the last 2 months...he's been stuck on this monkey! At first, we thought the monkey would be a phase much like the Lion, giraffe and bird, but nooooooo, not this dang monkey. It's officially attached to his hands.

He takes a bath with it, scoots with it, rides in the car seat with it and SLEEPS WITH IT! I have to pry it out of his hands post sleep time.

My kid loves his monkey. Here you go. Monkey boy. (I'll blog about the 'stuff' tomorrow..too tired to blog 2nite) Love you, A

Cuz I'm cute and that's all there is to it!

2008-12-05T17:00:00.000-08:00

Luke: I ain't lying. I'm cute. I know it. I scream, kick and get my way a lot. So what? I'm a baby. Well, at least my mom still says I am. So..I'm going to milk it. As long as possible. Ain't no baby girl gonna step on my turf. I'm cute..and that's all there is to it.

Mom: Stop taking Hannah's paci away from her mouth. I'll beat your butt mister. Stop that!

Bottomline: Luke is testing momma! Can you see it in his eyes below! Sneeky mister.

Pup chop muffin in PT therapy

2008-12-04T16:59:00.000-08:00

Hi blog fam,

Ok. A much needed blog post for Luke. He's rocking it out in therapy. It's unbelievable. Luke has had a new Physical therapist for about 2 months now and she's amazing. He really likes her and works so hard for her. An answered prayer for us.

We are praying, praying he starts walking in the next few months. He's climbing on EVERYTHING, taking more risks than ever before and really becoming independent.

He's even starting to hug his regular therapists when they come in. Our little social bunny. (just like his momma) lol.

Ok...so brace yourself...it's amazing! We stand in awe of our mister!
Love you so much family,
A

Oh...one critical note: Notice the huge hole in the back of Luke's pants! That's right friends...Luke scooted a hole in his pants! You see?! I'm not the crazy no pants mother you think I am. I'm really not. There IS PURPOSE in the madness around here. My mister is a butt scootin hole pants fool. So extend grace loved ones! lol.

A Splash of Luke's new sister..Hannah Hope

2008-12-02T17:01:00.000-08:00

Luke Smiling.....isn't he adorable?

This post is for the Grandparents of the family. A little spice of Hannah bean.

Of course, had to post Big Brother first. A close up shot of mister.

Photography by Ericka O'Malley.

Only one little issue with our photo shoot: Little Hannah is too strong! I can't believe I can actually type these words out. However, we missed the Anne Geddes approach of wadding up a newborn in various positions and they just lay there accordingly. Not happening with this little missy. We would fold up her legs under her belly and she would kick them out! So funny.So...flat on the back she goes. Enjoy--she's our angel girl.

Thanks Auntie E...we love you.

Hope you enjoyed! She's becoming seriously alert this week. So fun to see. Love you all, A

The Mayo Clinic confirmed...

2008-12-01T16:58:00.000-08:00

That Hannah does not carry the CMS gene mutation.

I got the email several days ago and wanted to post this as I know some of you were not aware.

My heart: Uggh, my heart. Well, I got sad. Then, I got sadder. Started thinking of 'well, she would have been healthy if it were not for downs'. Etc, etc. Lots of thoughts.

Many of you have said "I'm speechless". Well, know that we feel the same way still off and on. Just speechless and walking each day out.

I must say, she's incredibly strong. Very healthy. Just like a naturally healthy newborn. It's radical actually. Aside from the label of down syndrome, you would never really know.

I'm going to be bold and speak my mothers' intuition. She's going to be fine. She's going to be bright, smart and high functioning beyond what anyone could possibly see now.

I see it in her eyes when she looks at me. Just like when our little Luke could not move very much and a past therapist we had early on claimed he had neurological problems..."I boldly rebuked it, fired her and then said 'no, my child is in there..I know it, I see it, he has the will, God has shown me in his eyes'.

By God's grace and mercy...Luke is exactly what God showed me! Smart, bright and learning by the day.

I claim and profess boldly the same intuition that God gave me over my Hannah. She's going to be amazing. No specialists needed for momma.

Love you blog family...thanks for listening.

To God be the Glory,
A

Thanksgiving..our sweet dysfunction 1x a year!

2008-11-29T16:57:00.000-08:00

Thanksgiving day. A day of hectic food cooking; rushing around and trying to meet the deadline eat time; loving the new baby; attempting to photograph a family portrait; and pretty much random fun in the Hughes household. I was feeling 'physically' ill off and on all day. This c-section stuff is a killer. Hope to feel back to normal soon.

So...let's begin blog family. I will try to make this quick..I'm in rush blog mode these days and I hope and trust my summary bullet points speak about our hearts and mind when posting.

Here goes...much love, A

All the pictures below are power blogged. I just put them up there for your viewing. I'll sum up the day and you can view the pics and figure it out! It was a good day.

Attempt to take a family picture of me/jon and the kids. Total nightmare. Not surprising. Jon hates pics and is difficult through the whole process (to which I am greatly bitter about) and Luke is....well, same O Luke. Enough said. Hannah was the only one cooperative. Here's the best of the best below. *can you see my bitter smirk? LOL
p.s. Ericka..this family shot above in front of the toys is actually quite appropriate. The toy box is our life these days. I actually love the background setting. :)
Family member pics scattered throughout. I think you can figure them all out. Lulu is the blonde...my grandmother wore her cowboy shirt because she got 10% off at the Grocery store for wearing it. Gotta love that. (cracked me up)
Josh and Ronya came and that was fun to see them. (ohhh, to have college romance love again) So fun to watch.
Ericka/Lisa are always invited to our Thanksgiving. Thank you ladies for loving us 'just as we are'. We love having you. Picture of Lisa and Ericka below. I loved it.
Random picture of Lisa and stuffed olive.
Luke having a 'out of sync' moment! He hated the noise on his new laptop computer that grandma got him. :)

Luke and Lulu.
Momma and Luke time.
Jon's kids and their kids. So fun to see them!

Jon's skin funk picture.
Uncle Josh and Luke time!
Bubba and Pa
Me sipping hot latte that Jon made with a dash of starbucks liquor..so good.

Lastly, INSANE GOOD food pictures. We are DANG good cooks people. We really are. Texas cooking at it's finest. I love Thanksgiving food,...turkey, sweet potatoes, corn casserole, apple spiced rum cider, aspargus casserole, green beans, mashed potatoes, cranberries, dressing (to die for from Lulu), deviled eggs and so on and so on. Aww, let's not forget the homemade pies from 'momma' my stepmom. She rocks those out.

Hope you enjoyed family...love you much. A

THANKSGIVING FOOD -------a glimpse of great cooking.

Hannah is here..update

2008-11-21T16:54:00.000-08:00

Dearest Blog family,
It's me Andrea. I trust and hope everyone knows how much I appreciate your support and prayers for our little Hannah.

I know everyone is desperately wanting to get more updates on our sweet baby Hannah. Please forgive our delay.

I will start out by saying this will probably be one of the most difficult blog posts I've ever written. I honestly don't even know where to begin or what to say and how to say it. My words and my heart are torn.

At about 11am Thursday morning my husband, the NICU doctor, and my relatives were in my room before I really could comprehend what was going on. Before I could grasp why the NICU doctor was even in our room, the doctor started to speak.

Long story short, the day of Hannah's birth they noticed some features in Hannah that looked like Down Syndrome. They sent off for a test and she began explaining to me that the test that they sent off for Hannah came back positive for trisomy 21 disorder. Meaning, our little Hannah has Down Syndrome.

Dear family/friends, we were heartbroken to hear this information. I broke down and cried while the doctor was speaking and had a hard time getting my composure back. Jonathan remained calm until we both asked everyone to leave the room so that me/Jon could be alone. We needed to be alone. Jon got in bed with me and we cried together and cried out many things to each other and God in the hopes that somehow we could manage to get a grip on the diagnosis of our sweet Hannah.

We are still in shock and taking it day by day. Our family/friend support are amazing and we could not ask for anything more from them. They have done all they can and will continue to do so.

The truth of the matter is Jon/I denied the Downs tests early, early on. If we had done the tests and we had been told Hannah was going to have Downs, we would have proceeded with the pregnancy and prepared then. We would have driven to the hospital as planned and had her as planned on Wed. morning. And..we would have been praising God for a healthy child all the way.

Nothing would have changed. All would have gone as planned and our little Hannah would be our sweet daughter no matter what. This is comforting to me and Jonathan. Very comforting. Jon is passionate about voicing his opinion on the subject of God's creation. I am equally as passionate. Nothing would be different.

So, here we are with this gorgeous child. This amazingly gorgeous child who is already reaching in and grabbing our souls. I swear...just like her big brother, she had to come in with a huge entrance.

We were told by the NICU doctors that with downs kids they have to be monitored especially close with their hearts and thyroid. I'm not entirely 'up' on the facts but as best as we can tell, we are being told that Hannah's heart is doing great and her feeding sucking swallowing are amazing. She's taking a bottle every 3 hours like a champ and the speech therapist is telling us that she's doing amazing.

Currently, she's on minimal oxygen and this is where we are asking for prayer from you loved ones. Please pray she can get off the minimal oxygen and we can go home with her in the next couple of days. We are just 'anxious' to get her home.

So my heart....I will blog about that later this week. My heart is a lot of things. My spiritual heart is a lot of things. The only thing I want to say out loud right now is that I'm proud of my husband for loving our little Luke and Hannah desperately right along with me. He has said some beautiful things to me that I will 'treasure' in my heart for a while during this special time.

We are taking this one step at a time. It would be a privilege if you walked each step with us. We will need the support and prayers and most of all...grace filled love.

We once again stand in awe of what God has brought to us. She's our little angel.
In His Grip,
A

Photography by Ericka O'Malley.....thank you Ericka..you know how much these mean to me. I love you. A

Getting so close..random thinking..

2008-11-14T16:53:00.000-08:00

Hi family, well, my last official weekend is here as a mom of "1". I have been thinking these last few days as I'm on my computer as my "1" baby is taking a nap and I'm in bliss on the computer just typing away with no distraction. ha.

I keep thinking and pondering random thoughts in my head..here's a glimpse of my private reality that rolls through my head....literally in this order.

'wow, will I have any downtime with 2 kids?
'will Hannah sleep when Luke is sleeping?'
'I gotta get them both on a good schedule cuz I'm going to need some downtime'
'Is my life over?'
'I think it is'
'Lord, am I being selfish thinking like this?'
'I'm so getting a nannie'
'I'm worried Jon won't help pull the weight of having 2 kids'
'God I hope she's healthy'
'Lord, please...I don't think I can handle another special needs child'
'I know, I know...You're in control God'
'how am I going to leave the house now?'
'I so gotta get a nannie'
'ugh...I gotta start working in 6-8 weeks or we will go broke'
'how am I going to get Luke to school on time with a new baby?'
'I think my life is over'.
'I really do'
'help Lord, help me deal with this transition..I'm nervous about this'
'God I hope we can come home with a baby on Sat.'
'ok Lord, just deal with me..deal with Jon...deal with Hannah and Luke'.
'Just be there for us...K?'
'Love you Father..I just need You.'.

So, there you go. Above are my thoughts. My wrestle with God I suppose. And myself! Praying all will go ok and honestly praying that God be with us even in the midst of our doubts of what the future holds..big stuff and little. I do feel your prayers blog family. Please keep praying.

Love you much---ok..be back with nursery stuff the next post.

hugs,
A

Oh Gracious, the largest gift ever given to us!

2008-11-11T16:52:00.000-08:00

Oh Blog family, amazing, amazing, amazing news!!

I wished so much I could name "names" and give the thanks OUT LOUD for this amazing gift that was given to Jonathan and I today. However, I have been instructed by the "giver" that I can't. (ok....hard to do...but I respect it and will not name names)

Long story short, the last few days have been heavy on my heart since I felt compelled to pick up this Cord blood brochure in my OB's office and read it over. Now, keep in mind, I have been staring at these brochures for 6mths people! 6mths! Not once did I ever pick one up until this week. I actually have a client with a special needs child that prompted me to really think about it these last few months. It's been nagging at me.

I started to read about the benefits of the Cord blood and how it can help with malignant cancers, treat diseases of all kinds, etc.

So, I go to bed last night and can't stop thinking about it. I kept thinking..wow, someday the Mayo Clinic 'will' come up with the cure to CMS. (Luke's inherited gene mutation) And, some day...God willing..Luke may need stem cells that are a perfect match from Hannah's DNA. I mean..who knows?! Mestinon (Luke's miracle drug) was just created in my grandmothers' lifetime for pete's sake?! you know?

So...I call them and have this amazing conversation with a representative about how it's cured children of long term diseases and malignant tumors, etc. I probably asked this lady a million questions and she was so patient and kind about Luke's story. She proceeded to tell me about the gene therapy they've been doing and it just floored me. I was sold.

So...I said a prayer and made a call. Within 2 hours, the deal was done (paid for in full by the givers) and my blood cord kit is being federal expressed to me tomorrow for us to take to the hospital next Wednesday!!
Oh my gosh ya'll. I'm still floored. And...I'm comforted beyond belief that someday this could help Hannah, Luke, me, Jonathan or a close blood relative with a debilitating disease and/or cancer. (understanding that a match has to take place within our DNA)

It's a huge deal for my heart to know this is going to be stored and taken care of. I'm elated. Even if it's all unknown....to have this...brings me much joy and peace to know we HAVE IT. I think being a special needs parent awaiting a cure has motivated me greatly in this area. I'm sold out on this.

We are storing this at the most experienced private CORD BLOOD BANK in AMERICA.

CBR - CORD BLOOD REGISTRY

And, if you want to call and inquire...please call Jennifer (our representative) and tell her I sent you. She will take great care of you. 800-588-6377 (press opt. 1) and then key in her extension 686.

So, I end with this. To God be the Glory. I am so thankful to God for this gift and SHOUT OUT to the LORD the names of the givers and say "thanks be to God for whewing them to do this!".

Love you blog family------Just had to share immediately!

Luke the dare devil...scary!

2008-11-10T16:51:00.000-08:00

Ok, so, here's how it all went down this weekend.

My son is becoming mister dare devil and it's terrifying the ba'jesus' out of us!
First off, I'm on the phone in the living room chatting away and watching Luke play on the floor.

Then, Luke scoots off to the next room where I assumed Jonathan was residing! Not so. Jon was in his office on his computer.

Translation: I thought Jon was watching Luke and Jon thought I was watching Luke.

Total child neglect time from parents: Approx. 7 minutes. (give or take a few seconds)

So, within this 7 or so minutes I realize that Luke is laughing and giggling abnormally loud and it was coming from the next room to which made me suspicious because this is my office and there's typically not this huge breakdown of laughter in this area. (no toys..no play stuff, no TV)
I start to walk in my office and look up and behold..I see Luke sitting on the side bar of the chair by the fish tank with BOTH legs dangling over and hands are FREE! He's balancing himself right at the fish tank. I about died!! I screamed "Jonathan! Get in here..you've got to see this and I thought you were watching him!?!!". Jon runs in and freaks right along with me and says "did you see him do this on his own?". And I say "UGH! NO!". We both were in awe that we could not speak. I was in a gasp of air and could hardly carry on my conversation with Ericka thereafter. Freaky!!

So! Today..I almost got a reenactment of this scene and he decided at the last minute not to hike his legs over. I personally think it's because he had his clunky shoes on. The neglect incident was with ZERO shoes on!

I also included Josh the day before in the video which I believe prompted him to do this the very next day.

Just call my son Dare Devil! I have been known to say this many times about my amazing son when he would kick his legs really hard while laying on his back pre-diagnosis. I used to say "he's very athletic!". Honestly....I'm starting to believe my prophetic stance. Who would have thunk it? This child will RUN when he finally starts walking. I'm here to tell you! We will have a little Forest Gump on our hands. Sweet personality and all.

I can't wait. Until next time....here's a video for your viewing pleasure. And YES! I know. NO PANTS. Let it go blog family...you have no idea how many shorts/sweat pants this child has scooted HOLES IN! I'm done. So...just a diaper and his special shoes. So funnY!
Don't be hate'in girlfriends! Love you, A

Pics of Joshy and Luke THE DAY BEFORE BELOW!!!!

OK...see picture below. Imagine me walking in and seeing LUKE sitting just like this except...NO ADULT SUPERVISION!! All by himself. How in the world did he hike both legs over, balance and then position accordingly without falling right into that glass fish tank? Grace of God people...Grace of God.

Fun Video below..worth watching. It's hysterical...diaper and shoes only will crack you up. My poor little mister. Momma should be fined for this type of bloggin!! Please note! He free floats it a couple of times. Meaning...he attempts to stand with no support! Watch towards the end on this! So fun!

Luke's school plan is official with slight change

2008-11-07T16:50:00.000-08:00

Well, I had another (yes..another) school meeting yesterday to recap and review Luke's school plan. Again, we met with all the therapists that assessed Luke 2 weeks ago as well as the principle of the school present! I was a little surprised that the principle attended these meetings but hey..we'll take it!

After going over Luke's goals from each therapist,etc... my facilitator Karen proposed that we skip home bound schooling and bring Luke up to the school everyday 5x a week for 2 hours and 45 min. per day. He would be in a contained room (actually very large classroom) by himself for the first few months doing therapies and cognitive education. Time: 8am-10:45am

Meaning, the staff is willing to isolate Luke and all the therapists will go into his classroom away from other kids to keep from getting illness. I was elated!

Of course, our plan of slowly bringing 'healthy' kids into the classroom with Luke is still on target and set for the future.

I could not ask for a better plan! I am in awe and so impressed with this school and so very, very, very thankful that they would invest so much time and energy for our Luke.

I plan on making sure all the therapists and teachers that are involved are gifted greatly by momma. Whether it be a free photo shoot, volunteering, etc... I just want to do whatever it takes to make sure that I accommodate them in anyway.

I'M SO EXCITED! MY BABY STARTS SCHOOL DEC. 1st!! Whoohooooo!!

Of course, I'll be taking many pictures in the months to come! Stay tuned for more on this topic. Lulu bought Luke school clothes for his Birthday so he's all set. All we need is Aunt Lisa to give him his haircut and then my little mister is becoming a big boy as of Dec. 1st.

Be back for more...love you, A

Halloween recap

2008-11-02T16:47:00.000-08:00

Hey everyone! Halloweeny recap. The night was actually slow for us with trick-or-treaters? It was confusing as last year the weather was worse and we had more kids. I think it's because halloween fell on a Friday night and everyone wanted to attend costume parties! IMO!

So, it started with the painting of the belly pics by Ericka. (see blog post below if you missed the pumpkin belly pics...so fun!) And, then Jon made an apple cider recipe that became a huge hit with the local neighbors. Luke did not take his nap until late that day and I ended up having to take care of him right in the middle of all the action when the kids were coming and going. So...for me, I was bummed cuz I didn't get to have more fun but Luke was seriously whiny and did not want anything to do with his halloween outfit. (ask Ericka..she'll tell you!)

So...I got some shots of him with his Santa suit on yesterday while he was in Hannah's room jumping all over the bed. As you can see below, he still wanted nothing to do with this costume! (BIG SIGH) Maybe next year!!

Ericka's artwork on my belly video below! It's fun to watch her in action painting. You'll get to see my belly perspective these days. I shot the video looking down! So funny.

As you can see, this picture below is foggy! It's because of the fog machines going. Hence,....why every one of my neighborhood kid pictures were foggy! I didn't post them due to the fog factor. Don't get me started on the fog machines! They were over the top and I begged Jon to please shut them off. He refused and I just gave up taking pictures. It was fog ridiculous.
However, we passed out glo necklaces again and the kids AND ADULTS loved them.

Luke wearing his scary jammies. I just gave up on the outfit and slapped him in his jammies. He was much happier!

Ericka's costume was a garden. We loved it and thought it was very creative! LOL

Again, if you missed the belly pics...see blog post below!
Overall, the night was a success with the cinema and neighbor fun. See you next year! Love you, A

Hannah's first Halloween outfit

2008-10-31T21:47:00.000-07:00

Ok bloggers...get ready for some serious halloween pumpkin belly fun! Yes..that's right! Ericka painted my belly tonight and boy....was I a huge hit on the block! LOL A big ROUND hit!

Doesn't this look amazing? I was seriously impressed with Ericka's artwork and over the top loved my belly! Isn't this so funky to look at? I loved it!

I'll post more halloween pics from the night tomorrow. I just could not wait to post these and had to get them out there for your viewing pleasure. LOL :)

Thanks to Lisa Allen for the idea and paint! Oh! And..photography by Ericka O'Malley below. She not only painted my belly...she took these amazing pics! So fuN! Enjoy and be back for more!! Love you, A

p.s. Won't Hannah just love this when she's older? I think she'll love it! Not to worry...I'll post Lukester's outfit tomorrow. (a long story!)

Preparing for the fun

2008-10-31T16:45:00.000-07:00

Hey blog family, well the day is here...big halloween fun. Jonathan has the entire house decked out and we actually have a screen cinema going! Video below. It's a projector on our garage door playing "Halloween themed cartoons all night, Charlie Brown, Scooby doo, etc". I have wanted to blog this all month! But..my pregnancy has me so tired that my blogging has lacked. So sorry to blogbarde you but I wanted you to see this. The neighbors have loved it and of course we are looking forward to seeing all the little kids dressed up tonight. **pictures to come!

Of course, we are stalked and ready to go with glo sticks and glo necklaces. They were a huge hit last year.

BOO! That's what Luke just said to you.

I'm going to attempt to paint my stomach like a pumpkin! This was Lisa's idea so it should be quite interesting to see what happens! LOL

Ericka is coming over for the festivity fun and Lulu is 'somewhere tonight?'. She won't say. I think maybe she has a date and just won't tell us?! (hmmm, could be?)
Lisa has a costume party to attend and of course DEB ditches us every year for Tisha fun. LOL

So...stay tuned for more fun pics of Luke tomorrow. He's going to be Santa Claus!!

Below is our decor and Video Cinema! note: yes, it's been going on all month long! And..you'll get to see our electronic scary ghost lady moving and hanging from the patio ceiling. Creepy scary!
Love you!
The master halloween decorator below (DH)....and mildly obsessed with decorating I might add!! (Luke is in front of our cinema)

Organizational post

2008-10-26T16:43:00.000-07:00

Ok..by request..here is my organizational photo's of what we did this weekend. Wished there was a 'before' picture. However, I'm not sure I want to be reminded of how bad it really got. Seriously people, it was TOY HAZARD potential. I could not walk across the living room floor without almost falling over on a stuffed giraffe, metal car, block from 'somewhere' and your random plastic pieces that we had no clue went to what?

We got the shelving at IKEA. click here

These storage racks below are from Target. We bought one retail price and the other at a garage sale for $10. You can't beat this little system. Holds little toys perfectly!

Whew! Off to the next project!! Nesting, Nesting, Nesting!

Sunday, Sunday

2008-10-26T16:40:00.000-07:00

Hi loved ones,

We've been seriously productive this weekend.

Cleaned entire living room out. Went to IKEA and bought the really cool Trofast system. I was in heaven organizing these toys and getting them off the floor. We even put 3 bins of 'baby' toys in the garage for Hannah and we will pull them out as we need them from the garage! Whoohoo! Space and breathing room.
Hanging all pictures / stuff today for Hannah's room and hopefully my closet shelving.
Cleaning out Luke's closet and almost done! I've had to take breaks in between doing this as it's just exhausting!

Oky Doky...almost done. Video below is Luke playing 'momma'. He's so fun.

Love you and hope your weekend was a good one, A

Luke Meltdown

2008-10-22T10:36:00.000-07:00

Hi blog fam,

I'm so behind in my updates. This video was taken in Sept? I believe. At any rate, it was dang hot here and Luke had a serious meltdown as he's always wanting to be outside. Poor little Hannah girl is going to be forced outside quite a bit. Luke loves outside. At any rate, for historical journaling purposes..I felt it necessary to post a meltdown. Someday..he'll see that we loved him through it. Poor little bubba. I seriously cannot wait for him to walk and talk. I really believe this will help the frustration of communication greatly. God's timing.

Love ya'll enjoy. (if you can get through it...somewhat painful..however, he does calm down in the very end)

Luke's school update

2008-10-21T09:25:00.001-07:00

Hi Blog family! Happy Mon. (I'll explain the pic above in the end!) LOL. Hope your weekend went well. Ours was exhausting. Not that we did anything eventful on Sat/Sun. It's just that me/Jon were really tired this weekend. So, we sat around and did nothing. Much needed R&R for sure.

Ok....Luke's school update! We had his meeting on Friday and wow....it was so cool. They literally had this play assessment room with all sorts of kiddy stations, toys, tables with play doh, crayons, etc.

Jonathan took off work and me/the nurse and Luke were sitting in this room with about 15 people (therapists, diagnosticians, ST, OT and PT people). It was rather intense actually and somewhat stimulating for Luke. Luke definitely showed signs of his sensory stuff. Meaning, he would cover his ears when too many people were talking and interacting with him.

I was personally stressed about this and we did have an 'issue' upfront in the meeting. Long story short, there was this 'young' person that was a therapist and he kept getting in Luke's face and talking, asking him questions, talking in his space. Luke kept holding his ears and crying and I was getting anxious. Finally, after about 5 minutes of this...this PT therapist lady looks at me and says "I'm curious if Luke is bothered by him". (she pointed to the guy that was talking and in his face). YES! She said it. I said "well, I didn't want to say this...but yes, it's you". And, I pointed at the guy. (Awkward moment #1)

At this point, he backed off and all was well. Then, literally about 5 minutes thereafter Luke got stressed over a 'toy noise' and held his ears again. At this point, the same young therapist that was annoying Luke said "oh, that's strange".

Ok...pause here for a second. Note to everyone: Momma doesn't do well when people call her baby 'strange'.

So, of course, I immediately look him straight in the eye and said "it's not strange. It's called sensory integration issues. Nothing is 'strange' about it. The word strange is not valid here, he's sensory driven and you have to recognize that. Again..I repeated to him "nothing is strange".
I verbally bolded the word strange to him several times.

Insert Awkward moment #2 here. The room fell silent the the seasoned and mature therapists picked right back up where we left off.

My point was heard. Young therapist guy got quiet and not a word out of him the rest of the 2 hour meeting! Yes, you heard it. They spent almost 2 hours with Luke in this room.

Finally, after a few meltdowns from Luke I say "you know, Luke does so much better when Jon/I are not in the room with our home therapists. Would you like us to try that here?". They mutually and quickly agreed and guess what?! 5 minutes after leaving the main lady that was heading this thing up came out and said "we have a totally different kid in there". LOL. Yep...we know. Sadly, little Luke's parents cave in and protect him. We know this about ourselves. He literally pushes all of our buttons and boy was it apparent that day.

So...the great news and summary: After 2 hours of with parents present, not present, etc....they really, really got to see Luke perform to his fullest potential. Thank God the school has the foresight to give children 2 hours of play time so that they can see whom they really are. I swear if this had been a 30 minute meeting..they would have never seen Luke the way we see him.

The 2 therapists we talked too thereafter definitely said Luke is not ready for a classroom setting. However....

Here's what we came up with:

9 hours of HOME BOUND cognitive teaching from a teacher that will come to our house 9/hours a week.
4 hours of "WALK-IN" therapy that will include OT, PT and ST in the school setting! Meaning, we'll take him to school and he will have therapy in a room 4 hours a week.

Now, this is the beautiful part. They will bring 1-2 children in with Luke during his walk-in therapy sessions to get him accustomed to being around other children. The amazing part of this is that they can hand pick "healthy" kids that will not be sick and we can slowly transition Luke into the school system without him feeling so overwhelmed! Isn't that amazing?!!

Our goal is to slowly integrate him with other children and get him comfortable with the school building, the going to therapy and coming home, etc. We will slowly BUILD his school classroom in a way! Isn't that sooo cool. We are just so thrilled with the plan and we hope this will protect him from sickness during the flu season as well. (we are praying!)

This said, that's the skinny! Luke turns 3 in Nov. and this is when the transition from ECI to public school will take place. We hope to start Luke the 2nd week of December! Whoodeeehooo!

Ok blog family, thank you for your prayers for our sweet Luke. We are so proud of him and can't wait for the socialization he's going to get at school.

Personal note about being social: Had to say this real quick. When Luke was in the NICU (yes....2 mths old)...there was a nurse named Elsie. She came up to me early one morning when I arrived and she said "did you know that your son Luke is social?". I about fell over. I said "excuse me? how can you tell that?". She immediately explained to me that he was crying and wanted to face the nurses as they worked. So, they turned his little cribby around so that he could see them walk back and forth and then he was happy!". LOL

So...guess what! The same thing happened during this school meeting. One of the therapists walked out and said "your son is very social". Can you believe it?! I was like "uh huhhhh, just like his momma!". I had a proud mommy moment.

Ok family, I love you desperately.

Ok! Belly Luke shot below. This was taken at Luke's bday party! I'm trying to prepare him for Hannah. I'm not sure he really gets it yet. So funny! Hope you enjoyed. These pics crack me up!

Luke's turns 3 -- a month early!

2008-10-15T07:11:00.000-07:00

Hey blog family,

I've been looking forward to posting this blog. We did Luke's bday party 1 month early due to ms. prissy pot is coming soon. I wanted to make sure I had the energy to give Luke a great party. His 'real' bday is Nov. 21st. So....he's one lucky little mister cuz he got to celebrate early! We had a great time. Everyone had a blast and I was thrilled that Luke was so good and enjoyed himself.

A note to CMS Parents: Luke still cannot eat solid foods..so we allowed him to taste the icing on the cake. Thankfully..he didn't like it. (we were worried he would want to eat the cake part..) Choking is still a huge fear for us as he'll choke on cheese puffs in therapy. We are still working on this. Also, Luke has offiically been diagnosed for 1.5years. That's a big deal for us. He's making great progress physically and cognitively.

The pictures below are a 'serious' summary of the day. I have so many pics ya'll as Aunt Lisa and Aunt Ericka were snapping away. But, I don't want to overwhelm you. So, here's a quicky recap. Now..keep in mind, everyone was there in the family with the exception of a few missing. I just chose to recap the highlights. Enjoy!

Luke's turns 3!!!

THEME: ZOOLOGY PARTY! Jungle animals and little animals have been his favorite thing this year. So, I chose a fun zoology kit that I got off the internet. It was perfect!

Oh ya'll! THE CAKE!! Jon/I went down to the bakery and ordered a huge TREE CAKE. We put animals under it and we were so, so,so, so excited at how the Cake turned out!! Isn't it so cool?! I was thrilled. In addition to cake, the food we served was hot dogs and chips. Can't go wrong with that huh?! Cheap and easy!

The birthday kit that I ordered came with a sign that I could personalize! Fun fun!

Luke preparing for his big day! He loved watching the balloons and all the goodies on the table.

OF COURSE! His latest obsession are BALLOONS! We made sure we stocked up on balloons and Aunt Lisa got him the mother load of Balloons as well. He was in Balloon heaven!

Luke opening up his GIFTS with me and daddy! He loved everything he got. He got wooden blocks, tons of books, great clothes, educational toys. We were elated! Thanks everyone! You did good!!

Papa Roma and Luke playing and having fun. My dad really bonded with Luke! Luke normally covers his ears when dad makes animal noises to get his attention....this time.... Totally different! He was screaming and laughing and begging for more. We actually have some of this on video. I'll post later this week. So adorable!

CAKE EATING TIME. Luke got the topper of the tree. However, one bite of frosting and he was done. LOL. Honestly, a great thing for us as we were afraid he'd want the cake part. So, we didn't have to fight that battle and we were relieved. (you know..the solid food thing is still a work & progress)

GUESTS and an attempt at a family birthday picture below! I loved the picture. We are all smiling! Just not 'at the camera'. LOL

The rest of the pics were the recap of Deb's new mini van. Luke playing and having fun! And...my favorite part..Luke actively scooting over to Jillian (Deb's little girl) and wanting to give her a hug. This will be a whole new blog post later this week. It was over the top adorable and confirmation that my baby needs to be around more kids!

I hope you all enjoyed. We had a great time as did Luke. We are so proud of him that it's hard to put in words. Jonathan and I just adore his personality and disposition. God (as always) just does so well giving gifts to us. Lord, we thank you for our Luke. He's amazing and so very perfect to us. If by chance we don't think you daily for him and get into the busyness of the day......please know that we thank you in advance every day for this precious child. Thank you Lord for year 3! He rocks our world.

Love you all so much blog family,

Pumpkin Patch 08

2008-10-13T07:10:00.000-07:00

Ok, so. Here we are. Pumpkin Patch 2008.

Rundown:

The girls took a pre-shot of me to test the light. Yeah...that's me below. Thanks for the side view shot. Sexy.
Ericka and Lisa were the photoggies and by God's grace...I just have amazing friends that would care enough early Friday morning for a much needed photoshoot! Love ya'll!
First 10 seconds and shots...baby doing ok.
After about 20 seconds...baby starts making the sad face. (mom started to panic)
1 minute into shooting...baby starts lifting his hands to his ears. (oh Lord, here we go)
1 minute 10 seconds....baby starts holding ears, crying and then leans forward away from the sight of camera's.
3 minutes later...mom breaks down, gives him a paci and we pretty much say "ok..whatever we get....we get".

TOTAL Happy Pumpkin time: 3 minutes (give and take)

TOTAL Meltdown time: 30 minutes (off and on)

TOTAL FUN TIME: Well...us girls had fun! LOL

TOTAL RATING OF THE DAY: 7 points. (I gave us 2 extra points as Luke did calm down but just wouldn't look straight and/or smile)

Enjoy the sequential order of the pics below. You'll definitely get the picture!!

FOR MORE PUMPKIN PICTURES: CLICK HERE for ERICKA's PHOTOGGY SITE (they are all so cute!...meltdown and all)

Umm, dedicated photographers always do whatever it takes to get the shot. If you need this type of loyalty...contact the 2 girls below. LOL!!

umm, yeah...the above picture is called: Strange belly pumpkin out of nowhere?

My heart: Gracious me. Well, we really tried. The Sun was brutal and Luke just wasn't into the posing on pumpkins. I'm so ok with it. This is my sweetie pie. Meltdown and all...they are adorable to me!! LOL

My belly above cracked us all up! All I needed was some orange paint!

Hope you enjoyed our Pumpkin Patch excursion. Love you! A

My sweet little mister

2008-10-11T07:09:00.000-07:00

So, this is my baby. I don't think I've ever had a picture of Luke so real and candid as this one above. Aunt Lisa took this picture at Starbucks yesterday post pumpkin shoot. I can't stop staring at it because it's so hard to get that 'shot' of your baby where they just 'wear' the emotion. Luke is like his momma, you'll always know what he's thinking. He wears his emotions.

This sweet expression is what I see everyday in my sweet baby's face in the picture above. It's Luke. To the "T". He says "momma, I'm cute, I know it, but sometimes I don't get my way..makes me sad, but I'm ok after my meltdown". note: the music was too loud in Starbucks and he started crying holding his ears. Aunt Lisa asked them to turn it down and by God's grace they turned it off! He recouped and then sat on the coffee table staring and kicking at Lisa. She took the shot.

So adorable!

Ok...stay tuned for Pumpkin Patch 08 pictures. I'll save the details for that blog. Long story short: Pumpkin Patch 08 was an experience. LOL

Love ya'll!

Pumpkin Patch Past 07

2008-10-10T07:09:00.000-07:00

Hi everyone, (note: these pics below are last year!)

Note to CMS PARENTS: Luke had just been diagnosed with CMS a few months earlier. So, he was able to sit up on the pumpkin in a matter of a few months! The Mestinon medicine is truly amazing if it's applicable to the type of CMS that your child may have.

Today we are headed to the pumpkin patch with Lukester. I can't wait! If you recall, last year I got some amazing pictures of him. Below are post mestinon so he was able to sit up on the pumpkins last year.

This year, I'm going to need some serious assistance as I have no clue how he'll act. He's been more like a toddler wanting to sit on the ground and move off and not be still. So....in memory of last year's adorable pumpkin patch pictures..I just had to post them again.

Stay tuned for PRESENT PUMPKIN PATCH PICS! Coming this weekend!

Let's hope we can get these fun shots below! Happy Friday, love ya'll!

P.S. See these pants he has only below. They are rolled up. Well, they ride at his ankles now! He was my little dinky man last year. Now, he's my big boy! Wait till you see how tall he is!

Balloon face

2008-10-05T06:55:00.000-07:00

The following picture is why I have to have my photography friends step up and take pictures of my own kid. This picture was taken literally seconds before his angry face set in. I loved it as you can see the build up in his expression. He's about to blow.

This picture is called: "Mom, I'm over it, you have taken so many pictures with that big black thing in front of your face. You just say Luke (real loud) and all I can see is your mouth. Your loud mom, and..your screeching voice annoys me. I can't take anymore. Please, for the love of all that is Holy---stop clicking that thing and pay attention to just me" love, Luke

P.S. Don't miss his new shoes post below. So fun!

Luke's new shoes and walking update

2008-10-04T06:54:00.000-07:00

Hi blog family,

Update on Lukester duke. Well, he finally got his new cool rockin AFO shoes. They have hinges on the back and he's really doing well with this version. After a few disappointing trips to Payless for xx wide toddler shoes, me/Dh finally broke down and went to Stride Rite in the mall. We found them there and they were a perfect fit over his AFO's. (we won't talk about the financial cost -- let's just say XXDW cost a smidge more)

The PT (Physical therapists) are raving about his progress in these braces as he's got so much more balance and control when trying to stand up straight and walk around. (keep in mind, walking around means...being pulled up by us and US walking him around) Or..the gait trainer.

So, here's pumpkin chop pop. He's fascinated with the halloween decorations on the coffee table which is a good thing as it encourages him to pull up and stand straight for awhile. It's really cute.

A huge thing: He was standing up next to Jonathan's computer chair the other night and Jonathan said he side stepped from his chair to the desk. 2 steps!! By himself. Of course, I missed it! But, the therapists have told me he's been doing well with side stepping! whoohoo.

My mister in his new cool shoes!

Of course, he still loves to perch himself under plants. It's so funny! So, I had to post more plant hair pics above for your entertainment.

VIDEO BELOW of LUKE STANDING IN HIS NEW SHOES:

Hugs loved ones,
A

Funny feet obsessed mommy

2008-09-30T06:53:00.000-07:00

Ok, so I couldn't resist. I'm at Carter's (children's clothing store) and I pass by these shoes in the halloween jammy section for boys. I cracked up and had to buy them. What am I doing? I'm so becoming the "Holiday Outfit" mom. I've already bought Hannah's Christmas dress; Luke's Thanksgiving clothes; Luke and Hannah's Christmas morning jammies and now Luke's Halloween jammies. AND! Hannah's "first thanksgiving" outfit for the day of Thanksgiving.

Honestly, the only thing I'm missing at this point is Luke a Christmas sweater to match Hannah's Christmas dress. (to which I'm awaiting to see what baby Gap gets in this week for the Holiday stuff) I'm actually calling the store to see when the shipment is coming in?! (I so need help!)

I'm obsessed with Holiday Clothes.

Ok...enjoy Luke's new monster feet that match his jammies. The really funny thing is: I put them on and he loves them. He moves his feet and stares at them and keeps them on!!

NOTE: The drum stick goes everywhere with us now. He likes to click, click, click on everything in the store, the house, the floor, his toys etc. The only place we've banned "The clicker" (that's what we call it) is in his bed. He'll click, click, click on his bed and not go to sleep! LOL

Our blessed guest

2008-09-27T12:56:00.000-07:00

Our beloved Paul! Hi blog family, we had a special visitor last night for dinner. See him above? Isn't he adorable? NOTE LADIES: He's single and amazing. LOL! (you're so gonna kill me aren't you Paul? Don't be mad.....the above sentence filtered out of me...it's isolated..I swear) :)

We were so excited and anticipating this all week long. So, above is Paul--but you can call him "P diddy". Paul and I originally met at church while he was on staff serving and I was a small group leader a few years back. So, he's come back from serving in China a few months ago and blessed us with his presence! We missed you Paul!

Ok, so I must confess that I have favorite people in my life. I really do. I don't want to be that type of person that plays 'favorites'.....but sometimes..you meet someone and you walk away and think...I really love this person. They touch my soul. This is what happened when I met Paul for the very 1st time. He just grabs your soul. He's good people. (note again ladies: GOOD PEOPLE) He will have you rolling and has the most intoxicating sense of humor. It's so fun. I didn't want him to leave. (private reality) But...life must go on!

So, here' the fun rundown. Lisa/Paul drove over early afternoon and Lisa cooked this amazing meal. (thank you honey!) Truly! Amazing meal. Meatloaf stuffed in bell peppers, a blue cheese salad, whipped cauliflower and steamed veggies. Do you not want to just take Lisa A. hostage in your home? I do.

At any rate, we had so much to catch up on as Paul has not seen Luke since he prayed for him (MANY TIMES) in the NICU. YES..you heard it. Paul would jump in his car and race over to the hospital and lay hands and pray over our sweet Luke when he was so, so sick in the NICU.

**I just want it noted...when a man of prayer does this for your baby...you want to tackle him and never let go** Hence why I freaking love this man. He's just a light.

So, he got to see our Luke in full form. Aunt Lisa is brilliant and bought Luke a balloon to which he swoooned over. (she so knows Luke) So, Luke was giddy and elated to have balloon time. So fun! I was overjoyed that Paul got to see the miracle in Luke. It was a blessing.

We basically sat back and enjoyed the great food and we just talked, talked, talked. I was in Hoggy heaven .

This said, we ended with sitting on the couch watching some of the debate and I took this opportunity for Paul to write a note in Luke's baby album. I've been wanting the people that came to the hospital and prayed to write a note to Luke so that one day...Luke will see how much God loves him through other people and their prayers for him. It's emotional..but so very true. I was elated that Paul got to do this for us. (thank you Paul, love you)

That said, the night was ending and P Diddy and Lisa Loo had to depart. Lisa/Paul...I didn't want y'all to leave! (ok..I'm needy right now) :)

So...I'll end with pics. And...you can't miss the obnoxious video below. It will crack you up in reference to the halloween decorations! It's quite embarrassing actually. (lol)

ok so, the picture rundown: you know how Luke would smile for the camera on our last outing? Well, guess what. He would stick out his tongue every time Lisa or I would say "smile". It was hysterical.

Pumpkin chop and coveted balloon; Daddy and me; a smirk smile we got on camera!

Lisa loo and Paul above. (a fun pair)

DEEEEELEEEEESHHHHOUS FOOD!

Me and Paul at the dinner table...

So, the night ended and I was sad. Life is too short when it comes to community and fellowship in my opinion. I loved having everyone over and enjoying talking about the Lord, His ways that are cool and His ways that are confusing. That's my love. It's hard to explain other than it's nice to fellowship with sandbox playmates.

Ok...so, signing off. We love you Paul and can't wait to see you next time. Huge hugs, A

P.S. Below video is called "Exiting my house". You'll see. (you can always expect 'grand' entrances and exits at our house in September. (lol)

p.s.s. Note Lisa's hair do. Isn't it sexy?

Luke preparing for Hannah

2008-09-22T12:55:00.000-07:00

I've been pulling Luke's old baby toys out. Now, he's fascinated again with this crib toy. He played with it all day yesterday. I remembered how the music was really getting to me towards the end of it's pack up time. Now, it's out again.

This is Hannah's blanket. Luke has discovered this and wants to play with it all the time! He dive bombs it, wraps it around himself, covers up with it, etc. He loves the texture I think. Below he's playing 'where's Luke?'. It's our favorite game.
Self portrait of my belly yesterday. I'm so large.
Yes, it was Sept. 21st yesterday. Jonathan already started with the Halloween decorations. God help us. :)

More to come...I'm wiped loved ones. Need to retire. A

Gpa/Gma flying fun!

2008-09-19T12:54:00.000-07:00

Wow..I'm finally blogging this. So sorry! I'm 2 weeks out. Literally.

Ok:

Off to see Gpa/Gma and spend the night at the Farm. I cannot express in words how much Luke loves this place. Animals and flying all wrapped up into one! He's in grandparent heaven.

1st off, we celebrated Gma's bday. She got purses, perfume and fun stuff. She was shocked and elated. And, she made us an amazing breakfast the next morning with amazing morning coffee. Even Jonathan asked for a 2nd cup and he's a serious coffee snob.

The really great thing for me personally was that Jon/Luke slept in the next morning and me/momma (that's what I call Luke's Gma)..she's my 'other mother'.. and my dad were all up at the crack of dawn and got to sit on the back porch with this amazing Texas view, great cool crisp Tx morning weather and enjoy coffee and conversation without Luke scooting everywhere. (A luxury I never get) God's timing.

So, after the birthday fun and the boys getting up finally!....we headed out to DAD's TOY BOX.

see below!

Translation: A plane hanger! Dad's little toy box is what we call it. So fun. He's a pilot and quite the avid pilot I must add. He's got jets and fun little planes all ready to fly at a moment's notice. Well, I think the jet is still in progress. Another cool thing he does on the side. (see jet below) He buys them from abroad and brings them back to the US and rebuilds for US standard flying regulations. (I think I said this right?)

At any rate, So...here is Gma/Lukester awaiting the preparation of Dad/Jonathan flying out for a quick spin around the sky. Of course, Jon was super excited.

We followed Daddy/Gpa out to the run way in the car and this is Luke staring away. He was in awe. So fun. Video of them flying below. It's quite fun to watch. Sorry for the video quality. I've requested from Santa this year a high powered video camera. I'm not messing around with this video stuff anymore! I want better footage. LOL

p.s. no pictures of me! UGH! But..I'm on the video some. I think? I need to pay attention to this more. The picture taker always gets dissed.

Hugs loved ones..hope you enjoyed!

Pumpkin pop chop and school update

2008-09-17T12:51:00.000-07:00

Hi, ok..my new name for Luke. Pumpkin Pop Chop. (I know? don't ask..I honestly could not tell you) note: The glitter graphic above will make sense. It's giving you a glimpse of our school decisions that need to be made. This is me above! LOL

Ok....much anticipated SCHOOL UPDATE ON LUKE:

I'll try to make this brief. Longstory short: Luke turns 3 in November. ECI (early childhood intervention) releases all their kiddo's at 3 years of age to the Public school system. Crazy early!

Luke is eligible for the special needs program at the age of 3 in the public school right down the street. I've met with the coordinator and 'transitioner' lady named Karen 3x now. She's been so sweet and so very patient with me in allowing me a lot of time to 'think, fill out the chaotic paperwork, testing, etc'.

Logistics:

We have this huge evaluation meeting in October where about 15 people from the school staff will be present. PT, ST, OT, Nurse, School administrators, Motor lab teachers, etc. They will evaluate Luke in person and watch him play. I'm hearing this takes 1-2 hours? Wowsie. After each and every person watches him and tests him with games, toys and interactive play...then they write an assessment up for Luke THAT DAY. (literally)
At this point, we meet with the advocate lady KAREN and we create a customized special school plan for Luke.

Did you read that?! A CUSTOMIZED SPECIAL SCHOOL PLAN FOR LUKE! WOWSIE! I'm so excited.

She has said many times that this school district that we are in is like "FAMILY" and they take care of their kids. I'm so excited and so grateful we live in the sticks. She confirmed this as well because apparently a larger school district has limitations. I feel bad now for complaining so much about where I live. :) (it's far from city life..IMO)

Ok, so. The rundown. Pumpkin Pop will have 2 options after the evaluation. It's totally up to us on what we want to do as parents.

1) We can opt for HOMEBOUND schooling the 1st year to eliminate Luke getting sick. (a huge concern for us). This would entail a lady coming out to the house 4 hours a week to teach Luke one on one.

2) We can opt for 3 hours a day (3x per week) at school in a classroom setting. The school is right down the street and yes...MY NURSE WILL ACCOMPANY HIM at all times. (I'll drive them and pick them up) I'm seriously not a bus person yet. I need to have some control over my baby. I'm already freaked! :)

What are we going to do?!

DH= Wants homebound.

BW= (BW..stands for bitchy wife) LOL. = Wants both!

I'm honestly nervous about school but my gut instinct is that Luke will grow leaps and bounds in a school setting. I'm wanting to take the risk. I'm nervous...but I feel it's best for him.

Decision: Not made yet. We'll get back to you.

In the meantime..that's the skinny. sorry to rush this blog..but I'm so dang busy bloggies.

I hope to slow down so very soon!

Love you bunches. Pray for our discernment and wisdom as parents. I want so much what's best for LUKE. Not us. A tuffy decision.

Big hugs,

Plant hair

2008-08-28T12:51:00.000-07:00

Here lately, Luke has been scooting his butt over to plants. Tall ones. Then, he strategically positions himself right under them and just sits there and laughs.

He favorite thing to do is pick flowers and hold the flower, or tug at funky looking plant stems etc. ...pretty much anything that is planted in a pot or the ground is a playtoy for him.

Last season I posted where Luke was in Jon's garden and tearing up stuff having a hay day. Well, this season he's a little more polite about it and just stares and laughs. It's very sweet. He wants me to point and say "Plant", "Flower", "green stem". :)

Daddy always says to Luke "be nice to the green people son". It cracks me up. Jon is a green people lover. Not me!

So...I call this picture below "Plant hair". I even took some video where I say "Plant hair" about 50x. It's quite annoying after reviewing it. lol. Oh well, it's called mommy baby time. We get bored and start scooting over to other neighbors yards. So fun. (video below)

p.s. Sorry to the neighbor where Luke messes up your rock bed. I really feel bad about it. I try to put it back together...but I saw where you were not happy with my results from a distance. (oops) sorry. I don't talk to this neighbor nor do I know her name. And, I'm certain she does not know my blog..however, sorry strange neighbor?! k?

Vespa riding baby!

2008-08-25T03:26:00.000-07:00

Oh gracious. I know, I know. Brace yourself Lulu. Luke wanted to ride with daddy on his Vespa so, so, so bad. Everytime he saw Jon riding by he would scream and cry. So, we broke down and thought...hmmm, what can we do?

I ran in the house and found his 'walking wings' strap holder and ran outside. Me/Jon got his bike clip and clipped the back and it was the perfect harness for our Vespa baby. We call it "Vespa rigged up baby harness".

I fully understand this is ridiculous and not the safest thing in the world. But, Jon only goes down the street and Luke is in heaven!! Ok....here goes...video below. I must confess...I typically would not advocate for this type of adventure..but after a very intensely boring day for Luke....we broke down. We so badly want him to experience life and adventure. Yep...we are risk takers at it's finest. (one thing me/Jon both have in common for sure) :) Enjoy loved ones.

Birthday fun for Uncle Josh

2008-08-23T03:28:00.000-07:00

Ok! The above 2 family pictures of me/Luke/Jon are a huge milestone for us. Last night for the first time Luke started to SMILE AT THE CAMERA! NO kidding! This truly deserves a post on it's own to which I still might do! Aunt Lisa would say "Luke smile...." AND he would look at her and smile really big! At first, we thought it was coincidental....but then we tested him like 3x! He did it all 3x! It was amazing!!! I stopped and had a serious moment at the table while gasping at the photo's on the camera. Me/Jonathan were very touched and the entire table was so happy as well. Our little man smiles at the camera now! Urgent note: Photo shoot needs to happen Lisa, Ericka, April! Like...NOW! Ok...love ya'll. We had a blast! A

Update: ...last night we celebrated Joshy's bday at Babe's chicken! So fun! If you ever have the privilege of meeting my little brother...you're in for a real treat! He is the funniest person you'll ever, ever meet. (I'm very serious!) Josh turned 20. Wow! I can't believe it. I remember holding this little munchkin and changing his diapers. No..I'm not kidding. I really did.

So..Happy Birthday Bubba! We love you greatly!

Here's Joshy with his Babe Chicken hat on. They made him get up and dance. So funny.

The following pics are Joshy/Ronya (his girlfriend) and our family party guests! Enjoy!

A Cms friend from Athens, Greece!

2008-08-08T21:15:00.001-07:00

Hi everyone, meet Constantine below. She's 7yrs old from Athens, Greece and has CMS.

Her Aunt Yiota speaks and writes in English and sent me the following email about Constantine. She's a precious little girl and so very loved!

FROM YIOTA (a cut/paste of her email to me)

I am very happy to hear from you.
I believe that is very important for all of us to be in touch, support each other, exchange information.
There is not really much information for CMS, most doctors don't even know it and most of the times we fell very lonely. I'm sure you understand all this.
We can not understand how it came. No one in the family has it, at from so back relatives can remember. I hope that when we have news on her DNA things will clear up for her and all members of the family.
Constantine is on Mestinon, she takes it every 3, 31/2 hours (not during sleep). I wouldn't say that it always work. It seems that if she goes through a bad period nothing really helps.
Yes, when she is sick ( temperature, flu) she becomes weaker. She also had some light form of asthma, and until last year she used to get sick very often, do musks etc. She would get everything that was going around in the school. What helped us on this is that we started Homeopathy. I don't know if you ever heard of it (its an Alternative medicine theory), but we really saw a big difference. Her health has improved very much and she deals with colds much better.
To give an example, this year (from September) she got sick 2 times, us to the last 2 years that she would be in bed 6 to 7 times.
She goes to regular school, 1st great. She is very clever and has an artistic talent. For the moment she doesn't use a wheelchair. She can walk, but short distances and she needs help with stairs. When she is good she can do it but herself. Other kids are very supportive, but she compares herself with the other children and she comes up with all these, sometime difficult to answer questions.

This email is at work and I am here every day (M-F) from 11 to 19 local time.
Nice talking to you.
I am sending you some pictures to see Constantine and her mom.

Very very nice talking to you.
We will chating for sure.
Kisses to Luke
and of course You, for all you do for him.

xxx
yiota

Another CMS friend...Jasmine

2008-08-08T21:02:00.000-07:00

Meet Jasmine below. Her mom Kay contacted me and sent me her precious little girls' picture. Kay said that Luke's birth story and Jasmine's birth story were so alike. I was so thankful she wrote me! Here's Jasmine's pictures that her mom sent me and the email Kay sent me below explaining her story.

FROM KAY (mom to Jasmine) This is a cut/paste from an email sent to me:
Thank you for the response to the questions as that is very helpful and so glad that Luke doesn't have problems with his eyes and jaw.

It might be easier to tell you all about Jasmine from start to finish (i hope you like reading lol!!)

Jasmine was born on the 11/12/04 after a prolonged (and very painful) labor, as soon as she was out she had multiple fits and they gave her a muscle relaxant. its a wonder she survived that!!the med knocked her out cold for two weeks. all we were told was that she had extremely low muscle tone. she just layed there in an incubator, ng fed and had oxygen. after the two weeks she opened her little eyes for a few minutes then i don't remember her being awake much. they let us take her home after 18 days that was when we was in a living nightmare 24/7. i felt like a robot the first 3 months cant remember much. husband (paul) was at work and i was very stressed with no support.jasmine would be sick constantly then stopped breathing good job i have the sense not to leave her for 1 minute or she would be dead now.i know i can be dramatic but i was only 20 yrs old and had just had my first baby i didnt know what to expect but i knew this was not right. but after i had resuscitated her and phoned the hospital they would tell me to bring her in and put me in a room on my own and just tell me i was being dramatic then send me home. i just couldn't get it through to them that there was something gravely wrong. anyway it went like that for 3 months, then it all changed when i could not resuscitate her at all had to call an ambulance, was rushed to hospital where they worked on her for hours her heart stopped so they put a insulin jab in it and was bagging her for a long time. we live in lincoln and was at that hospital but it wasn't good enough so the recovery team came from sheffield to take her there, they didn't think she would survive the journey, but thank god she did. things changed dramatically from there she was on the ventilator for weeks and they could not get her off it so they decided to put a tracheotomy in. time passed she didn't sit up, hold her head, talk or nothing the first year she just layed there. she couldnt even swallow her own secretions. the only great doctor i have met was dr ritty in sheffield he did an nerve test on her and then she was diagnosed with cms. Finally we knew what we were up against, then a new problem, none of the doctors knew anything about it and could give us no advice.so i have just always gone with the instincts that mother nature gave me, and never been wrong yet. along the way she has had nissan fundaplaction and a muscle biopsy and a g -button.she really changed when she had the mestinon, big wide eyed although still straying. went to the loo everyday (i think we are the only mums that appreciate that) smiled instantly was the best moment ever, i cried. she walked when she was 2 that was ace and she has been storming on since then. and when she had the trach removed in December that was it, the best moment in my life she laughed and said oh no because her nappy fell to her ankles. and really it has gone from there we have broken from this world of silence to laughing everyday at the things she says!! she doesn't eat at all she never has, i was told never to try anything because she was so ill all the time, but that is one expertise i know nothing about, and here in the uk there is a shortage of speech therapists. but she can drink a little but will only have water (well at least she is healthy) she freaks out about her g button moving does luke? i have had to strap it down so it doesn't move or she complains all day. This the first time i have written her "story"

lots of love kay, paul jasmine and isabelle her little sister xxxx p.s. you can add the pictures to your blog i don't mind love to all

r1979@hotmail.co.uk
KAY (mom to Jasmine)

Another CMS friend contacted me!

2008-08-08T20:52:00.001-07:00

Hi everyone, guess what! Another CMS friend!

Meet Denise! She has the Dok-7 gene mutation and is 36 years old.

She's from Cape Breton Island, Nova Scotia. It is located on the east coast of Canada.

She located me on the Facebook CMS forum that has been developed.

Here is her email to me and some of her story. She's quite an amazing lady!

FROM DENISE (this is a cut/paste from her email): CMS is so rare that it is important to share information to anyone we can! That is so interesesting about the lady in the UK whose son was just diagnosed with DOK-7! Dr. Engel was saying that Ephedrine can work but the Albuterol seems to be more effective and less costly! He said that aside from missing this enzyme(DOK-7??) a lot of the receptors on our muscles are either missing or jumbled up together(trash). I really don't have a good clear understanding of it yet b/c it is so new and I am finding it hard to get good info on it. Dr.Engel is going to send us an article on it soon. He also took a biopsy from my brother and I b/c he has never saw more than one person in one family with CMS that all have such varying degrees of weakness! I was saying to my sister, Louise(unnaffected) that we were like lab rats caught in a maze. They were really puzzled by us and wanted to figure things out! We were glad to do whatever they wanted and so grateful to have a name for our muscle problem after all this time. The amazing thing for us was that there was this medication that could and did help us.(never thought there was such a thing) I still can't really believe it. It is all so surreal! My brother, Hughie(also affected) was joking to the surgeon after the biopsy that Dr. Engel(present during biopsy) was like a kid in a candy store running off with the muscle samples to the lab! lol He is dedicated, I tell ya!
Dr.Engel did say that the chances of our having children with CMS would be extremely rare, as you said. My mother and father both are carriers and are unnaffected themselves. (recessive gene) There are nine kids in my family and 3 of us are affected. I am the second youngest child.(36yrs) Hughie, who is also affected is 42 yrs. He gets along well and is an accountant for Nova Scotia Power here. He is less affected than myself. He has been on prednisone(steroid) for about 18 yrs and found that it helped him physically. (I tried it when I was 18 yrs old and it did nothing for me)He is going to ween off them now that he is on the Albuterol. He always found that he would weaken when he went off the prednisone. He said that it was a choice of quality of life over quantity. He chose quality. He is a healthy guy though. My sister, Darlene(41yrs) is the least affected of the three of us. It is very difficult to notice that there is anything wrong with her. She has found that after having each child(2 healthy kids) she weakened more. Both Hughie and Dar have benefitted greatly from the Albuterol like myself.

I am the most affected by CMS. In the last 5 yrs or so I was really finding it difficult to get around. Some days it was even too hard to walk out to the car. I hated going anyway b/c it was such an effort. I also didn't want my Dad, who is 75 yrs old now, dragging me around. He is too old for that, even though he is quite fit for his age. Now I am out and about all the time. (under my own steam)My best friend has just moved back home from Ontario about 1 year ago and I never even went to her house until recently b/c I didn't have the energy for climbing her steps. Now I am popping in there all the time. It is like I have my life back again and I still get up every morning and wonder if I will still feel good. I went to the movies the other day for the first time in about 3 yrs.It sometimes feels like it is too good to last. It is hard to get used too. It seemed like we went to the Mayo and discovered we had CMS at just the right time b/c the type we had was only recently discovered. I guess it was meant to be. I am sooo thankful!

About our birth, everything seemed to go along smoothly(as smoothly as birth goes that is) and our breathing was fine. The first time Mom noticed that there was a problem was when we were starting to crawl around. We couldn't lift our heads up. Mom said Hughie would crawl and drag his head along the floor. We seemed to meet most normal milestones but you could pretty much knock us over with a feather.(lots of bangs and bruises) Thank God I have a head like a rock! haha We never really ran except in an awkward kind of jog. I had to have rods put in my back when I turned ten because of scoliosis. Hughie and Darlene avoided this. Aside from that, I was never in the hospital(or Hughie or Dar)until I was 29 yrs old and got a very severe pneumonia in both lungs. It was touch and go there for a while but now I am more aware of colds and viruses. I find that I have a good cough but when I get really sick and worn out that I get so weak that I can't cough effetively and this is when I get into trouble.

Keep in touch and take care!

Denise
davale06@yahoo.ca

Target..take cash..or don't go!!

2008-08-08T20:50:00.001-07:00

Hi ya'll,

Field trip: Went to Target late yesterday with Lukester.

Private reality: Went to buy 1 thing. Came out with quadruple the stuff. Why? oh why do I do this? Target is the enemy! LOL

However, Luke loves this store. He gets so excited about riding in the basket. It's so cute. I actually enjoy this more than the shopping part because it's so cute.

Ok, first off. My intention was to buy these Yogurt drinks. Apparently...A hot commodity. I can't find them in 2 Walmarts and I just surrendered and drove to Target. After all, they always have it! The drinks are key to Luke as they are "nectar" consistency and that's all he can drink without aspirating. At least until we do our next swallow study. I can't wait for that!

On a good day..the total purchase cost would have been $7.80. However, it was not a good day in Target. Not sure what happened. It's crazy. I guess I'm like Aunt Ericka. She's got a Target problem as well. (is that ok I revealed that on blogger E?) I'm sure she's ok with it. :)

At any rate, the baby, baby toys are right next to the maternity clothes and I couldn't help myself. So, I stroll around and see baby DOLLS! Oh goodness. Something happened. I've sworn not to buy anything until Baby Hannah comes but what's an emotional pregnant momma having a girl supposed to do? I wanted to be the first person to buy our little angel her 1st baby doll. I don't know why? I just wanted to be the first one.

So...here goes! Behold..Hannah's first baby doll. Isn't she cute? Her hair is funky on top but I love it. It's got short bangs and something curly and poofy on top. Just like her momma! I haven't decided if I should take her out of the box. I'm awaiting that tug! :)

Then, of course, I had to get Lukester something that I've been thinking about for awhile. I'll go into this more later but his kid is addicted to this little video game. I actually had to hide it this am due to the overwhelming force it took on him last night. He played it for 2 hours! I was freaked out. It's a very innocent and fun game but I think the appeal was that he could hold it and touch the screen. It's not even age appropriate and he loved it! Whoohoo! I think he's going to be like daddy....a computer techie. It was adorable.
Lastly----my son this am. SEE HIS FACE in the below picture?!! TRANSLATION: MOM! It's 7:30am....get that dang camera away from my face! AND THE FLASH! HOW COULD YOU MOM!

Hilarious. These are the side affects to being in photography and using your children to test shoot on all the time. Note to self: Don't do it! It taints them and they will run when you pull the camera out! Hence...my sweet annoyed child's face below.

Happy Friday blog family! We love you! A

p.s. Note the Panda Bear he's holding. It's his newest animal addition. He loves, loves these little animals. So much so, I think I'm going to make his birthday theme....zoo animals. It's truly his thing. He even had to hold an animal in the car at all times now. God forbid we leave the house with the giraffe, lion and many others.

P.s.s. I know..no pants. I need help. However, notice his shirt...it says "Luke". Krista's cousin made this for Luke and I love it. I'm going to get her to make one for Hannah and Luke..same color. It's precious! Thanks so much Callie! I love it!

It's so hot here in Texas!!

2008-07-29T20:48:00.000-07:00

People....it's so hot. Seriously...I'm dying. Yesterday was so miserable on the front porch that Dh had to bust out the misters. TEXAS HOT.

note: CMS KIDDO's and/or hypotonic children are very prone to getting lethargic in great heat. Watch for this! Keep them cool and moist!

I must say, I cried last night watching the news. It's devastating. The heat has really affected some people here in Texas. I pray for them.

Here's a clip of me and Luke desperately trying to get cool.

note: I really don't think the heat misery is due to pregnancy. It's really hot this year. More than last year!!
Enjoy my baby mountain. I've passed up the word "bump". It's not a baby bump anymore!

3rd year wedding anniversary

2008-07-25T20:46:00.000-07:00

Hi family, it's me & jon's 3yr Wedding Anniversary. We married this time 3 years ago in the Grand Bahama's on the beach. It was a Christian ceremony and very intimate with just 'us'. We had a huge reception in Texas thereafter for our family/friends. In case you don't know...I have a huge baby bump under this wedding gown. Yep...pregnant with Luke. (5mths) As you can see, I'm slightly bigger with Hannah at 5mths. (encouraging)

Water Baby routine

2008-07-24T20:46:00.000-07:00

As most of you know it's been dang hot here in Texas. Like, can't breathe hot. Seriously...hot. Hot, hotter, and then hotter than HECK hot.

At any rate, we are stuck inside and have NOTHING to do. Luke does not do well in the heat and we all are pulling our hair out to figure out what to do daily to keep him from getting cabin fever. He gets so tired of being in the house.

So naturally, we bust out the water hose and we feed the plants, the porch, the driveway, the cars, and pretty much where he scoots and plants himself..we'll feed that area as well with water. WATER BABY BIGTIME.

He loves it! See pics I took from this weekend below. He's our little water hose mister.

P.S. The misters that Jonathan put on the front porch make no difference in the temp. until around 8:30pm. Bummer. We were hoping it would help. But...not until much later.

Enjoy the below. The pics are called "Crazy water boy". As you can see below, he'll get water in his eyes and it doesn't stop him. He just wipes and goes.

For all those special momma's and daddy's

2008-07-22T16:04:00.000-07:00

Hi fam, this video is for all those special momma's and daddy's out there that put their children 1st. No matter what. God says "Children are a gift from the Lord". I watch this and pray.."Lord, please let me have the priviledge to treat my children as the most precious gift ever given to me". They are truly gifts. This father loved his son as God loves us. He's an inspiration and example of Christs love for sure. Thank you Jesus for the gifts you've given our family! Love you much! A

Weekend visit from Gma/Gpa...

2008-07-21T16:03:00.000-07:00

Had a great weekend. It was busy and relaxing at the same time.

For starters, Friday night we had a visit with Aunt Ericka. We shuttled over to her house and me/luke snagged her and we drove to Willow Bend Mall. What a blast! Luke was in heaven as we found him a balloon PRONTO because he saw other kids with one and freaked! So, we snagged him one and it was all over. He was in Heaven!

Then, Saturday: Dh came home after a long sabbatical and I needed church. So, he spent some much needed time with baby and I sprinted to church with big belly in tow. Ericka saved me a seat and thereafeter we drove to Snuffers for dinner and had some seriously huge burgers! And cheese fries/fried mushrooms. Over the top good! I was thrilled to have some girl time less kiddo.

Then, Sunday: Pop drop from Grandma/Grandpa Skinner. (my dad and other mother) Of course, they brought the usual...amazing food for me, to die for books for Luke and homemade cookies for Jon. We loved the visit.

So, here's a glimpse of our weekend. There is much more to say...but I'm power blogging tonight. Got a big week of work. Love you all, A

LUKE and POOL TIME! ME and FATTY TIME! Yes, I know. I know. I look pretty.

ICE CREAM MAN CAME!

Luke sitting with dad and Jon.

FAT WET EXPLOSION WATER DIAPER BELOW. He could barely scoot because it was weighing him down so much. Yes, we have swim diapers. We just never take the time!

A cheese puff...

2008-07-18T16:02:00.000-07:00

Hi, well, Lukers has been entertaining graduate cheese puffs. Yes, considered a solid food. Whewsie!

We've actually been testing him over the last month. So, the following video is from last night in speech therapy. Our therapist Jennifer comes over at 6pm in the hopes he'll be somewhat hungry. Problem is, I forgot to tell my new nurse to cut his feeds that day. Oops!

At any rate, I wanted you to see him crunch down on "A" cheese puff. It's quite scary actually. Last week was seriously video worthy as he choked and I had to scoop it out of his mouth. Uggh. I'll spare you the details. The joy of a tube fed kid. For sure!

I will say, Luke is not orally defensive with foods and textures by God's grace for sure. That's a huge deal with a gtube baby. HE LOVES food and we are thankful for it. But, it makes it so hard for us as he wants to try everything we eat. So, we still hide out when eating and we never can sit down together as a family and have dinner. It's just our life.

So, that's our food update. He's just maintaining his cheese puff chewing and sometimes he'll swallow one. But, a few minutes later, I hear a 'crunch' noise. We think he's pooling it in the back of his throat much like he used to do with stage 2 baby food. However, the upside is he's eating 6-7 jars of stage 2 baby food with ZERO problems per day. We've come a long way. This is just another journey for us. Our big agenda is a SIPPY CUP as well. More later on that!

Ok..enjoy. This will scare Lulu. She's very protective over Luke. She's very 'choke' shy with him. So brace yourself Lulu...he did good. Love you, A

Oh, one more thing. All by God's grace and mercy below. Hugs, A

A visit from one of Luke's nurses

2008-07-17T16:00:00.001-07:00

Wow ya'll, guess what? Wanda did a pop drop. (Wanda was Luke's RN nurse for a full year) Luke and I were thrilled. It certainly cheered me up and must say, SHE LOOKED AMAZING. So much so that I told her it looked as if she got a face lift. The recovery from her breast cancer has been amazing. She's got her hair coming in and it looked adorable. And..her eye lashes are all in as well. She's been giddy about that.

As you can see, Luke has grown up a bit since she's been gone and she just could not believe that. She even saw him turn the TV back on after I turned it off. That cracked her up! We miss the way Wanda loved our Luke. That's tough to find in a nurse. She grandma loved him for sure.

Below are pics I took of her on my porch. Doesn't she look amazing? We love you Wanda!

The picture below was taken by Lisa Allen! She was here and this was downloaded along with Wanda's pictures. This picture is called "Pouty Luke". LOL! I don't recall him being pouty when she took this picture, but it does look as if he's got quite the pout look!

Hope you enjoyed, love ya'll and thanks for praying for me. I can feel them this am. Hugs, A

A glimpse of the sono...

2008-07-15T15:58:00.000-07:00

Hi....have fun.

Aunt Lisa took these and the video. You can see Hannah moving around. :) So strange to call my baby Hannah now? I'm in shock still.

On the video below you'll see that Lisa decided to video tape my legs being raised at the table. I thought it was great videography as you won't be able to see too much after that. So, enjoy my legs in full view.

After that is Hannah's hamburger. (that's what my friend Darci calls that name I refuse to type on my blog)I know, I know. TMI. LOL. Sorry, I can't help myself. I used to call Luke an apple with a stem. Ok, I'll blogup. (translation: shut up) Oh...and you will hear our excitement on the video for your viewing pleasure as well! LOL Hugs, A

It's a PINK BABY! Whoohoo

2008-07-14T19:12:00.000-07:00

I can't believe it. We have a PINK baby. A GIRL. A GGGGIIIIRRRRRLLLL.

I could not believe it so much that I questioned the sonographer 3x.

"Are you sure?"
"How are you positive it's a girl?"
"Have you ever been wrong?"
"Can I see again?"

Bottomline, our little missy pop moved like 5x during the sono and she got a few different angles confirming that indeed there is NO APPLE SAC with STEM. NO STEM PEOPLE. Just 3 white lines and well...I won't blog the name. It's kinda weird to label that 'name' on the blog.

It rhymes with "FLABIA". Minus the "F".

You get the point. Now, I have a little mister and a little missy. I'm excited.

My blog poll proved to be correct! Congrats to those that guessed right. We are amazed and Jonathan is over the top elated. He's seriously excited. You can so hear it in his voice.

WHEW! What a wait. It's over now. Now...praying for healthy!

Love you all,
A

Haircut and wakeup time...

2008-07-11T19:10:00.000-07:00

Happy Random Friday blog fam!

Luke desperately needed a haircut. Due to conflicting schedules with Aunt Lisa, Jon said "I can't take it anymore and drove him up to Cost cutters". Luke cried the entire time. He hates getting his haircut. I have no clue why? It does not hurt him one bit. It's quite the drama and if you've ever missed his meltdowns..then click on the following for a remembrance: Drama KING

Here's the before haircut picture below and this is Jonathan pulling his hair back so he would stop itching his forehead while watching Elmo. That's about when Jon cracked and packed him up to get his haircut.

The above pictures are me and Luke being lazy. I thought I'd give you a visual of what my weekends are like and how I literally have no energy to get on the computer or even blog browse. It's entirely exhausting the 2nd time around.

Don't you think I look attractive above? I really love my brown bottom feet and too small shirt. Sexy girl I am.

The following below is a video of Luke getting up and this will show you his new haircut as well. My friend Lori video taped her child getting up and I thought it was over the top cute. So....enjoy Lukester first morning wake up. He's a cutie Patootie.

Love you, A

Cms 'hmmmm'...and 4th of July recap

2008-07-10T19:06:00.000-07:00

Hi, I know. I should have been back like 3 days ago. I do this all the time to my near friends and family. I say "be back". And then 1 month later, I'm back. Incidentally, that's pre-pregnancy as well.

So, ok...focus.

I have a little "hmmm" on my mind here. Meaning, I can't tell you how many times I've had a medical professional whether it be a Neurologist, MD, ENT, Pulmologist...or even my dentist ask me the following question...

"Did Luke move in the womb".

I would quickly respond "yes, yes, yes!". The kid moved all the time. Or....so I thought.

Interestingly enough, I have found that this new one in my belly is moving a lot. I don't remember Luke fluttering so much early on like this. Honestly, it could be just lack of memory. But, it's definitely prompted some "hmmmm's" in my mind.

Could this child in my womb not have CMS and the signs of movement are more apparent than with Luke? I have no clue but I'm starting to rack my brain if Luke moved like this and I honestly don't remember him fluttering away so early on like this. In fact, I've had to ask many mom's 'when did you feel your first kick'. I can't tell you how long it was for Luke? Not sure why?

With that said, I just wanted to share my "hmmm". Something to pray about and to remind you to please pray about this new one. I need lots of prayers.

Recap of the 4th of July party! Fun pics below + video. Have fun! I was amazed at how much fun it was. The kids played dodgeball in the street and played with the water hose. Wow..kids are so easy to please. I did learn from my 'seasoned' moms that I SHOULD NOT provide GRAPE juice JUICE BOXES. Note to self.

Husband playing fun music for the party

Lukers playing with the cones!

Me(mom)My 4th of July dress picture below. Big Polka Dot girl. Loved this dress.

Luke's swim fun

2008-07-03T19:02:00.000-07:00

Hey everyone, Debsie and the kids came by this week and we had some fun swim time at the pool. We had the best time! Lulu came as well which made it all the more fun. The kids were so excited to see Luke and spend some time with him finally! It's been so nice to finally get him out and expose him to my BFF's kids! I loved it. Long overdue!!

NOTE: The swim time scares the Bajesus out of me. Mainly because Luke aspirates thin liquids. I really do not relax at all while sitting next to him at the wave entrance. I basically have a mild anxiety attack silently.

Ok, Below is Lulu and this hysterical picture of Luke. Then, me, Jordan and Jillian in our swimhug.

Ok now, the fun pictures. Well, as you know Deb came up with the greatest name for my obnoxious gingham swimsuit. She called it my "Dorothy Suit". (..from Wizard of Oz) SO funny!

So..Deb decides to bring my DOROTHY SHOES which are these RUBY RED FLIP FLOPS WITH GLITTER TO MATCH MY OBNOXIOUS ATTIRE. SO FUNNY!

CLOSE UP VIEW OF MY DOROTHY SHOES!

Unfortunately, my Dorothy suit is short lived because Niecer came through for me and sent my BLACK SWIMSUIT AND I GOT IT TODAY!! So..pics to come of that! I can't wait!!
Ok blog fam...love you, hope you enjoyed! I'm powerblogging this week and keeping things short/sweet! Got a huge busy day. Love you, A

Angel Kiss...

2008-06-30T20:22:00.001-07:00

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...

2008-06-30T20:21:00.001-07:00

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...

2008-06-28T20:20:00.000-07:00

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

2008-06-27T20:19:00.000-07:00

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

Luke and Congenital Myasthenic Syndrome

Happy 6th Birthday our sweet gift from God.

Luke lost his 1st tooth!!

Our first piano recital!

Luke's Preschool graduation!

Kiss da momma!

My day

Cabin fever ended we hope!

Snow staycation

Snow day and recovering

Me and the babes! (Congenital Myasthenic Syndrome)

Luke's recital

Goal for 2011.

Luke's first official Christmas present!

Piano!

Luke's OT therapy

Luke's birthday week!!

Met another CMG friend!!

Happy Mother's Day

It takes a Village

Blast from the past

My new thing

My new thing

The parting of the sea

School field trip

Purple dino

Blast from the past

Monkey house

Our big boy is officially walkerless!! wow!!

Paper shredder party

Happy Easter upcoming!

My little walking and fake falling boy!

Merry Christmas blog family! 2010

A moderate trim

Words cannot express!

Halloween 2009

Found another CMS friend!

Luke-Tricycle!

Swine Break 09

More Luke video

Well hi, how are you?

Hannah (Luke sister!) lounging out!

Luke eating by himself! whoodeehooo!

Monkey boy..my little mister!

Luke walking part 2

Ok, sit down...Luke is walking!

A lot and video

More Luke talk and Hannah

Animal talk

Dang Monkey

Cuz I'm cute and that's all there is to it!

Pup chop muffin in PT therapy

A Splash of Luke's new sister..Hannah Hope

The Mayo Clinic confirmed...

Thanksgiving..our sweet dysfunction 1x a year!

Hannah is here..update

Getting so close..random thinking..

Oh Gracious, the largest gift ever given to us!

Luke the dare devil...scary!

Luke's school plan is official with slight change

Halloween recap

Hannah's first Halloween outfit

Preparing for the fun

Organizational post

Sunday, Sunday

Luke Meltdown

Luke's school update

Luke's turns 3 -- a month early!

Pumpkin Patch 08

My sweet little mister

Pumpkin Patch Past 07

Balloon face

Luke's new shoes and walking update

Funny feet obsessed mommy

Our blessed guest

Luke preparing for Hannah

Gpa/Gma flying fun!

Pumpkin pop chop and school update

Plant hair

Vespa riding baby!