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

Pumpkin Patch 08

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

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!

A

Pumpkin Patch Past 07

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

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

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