Getting so close..random thinking..

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!

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!

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

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

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

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

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

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

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

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

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!

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,

A