Cream cheese

So, we are in LOVE with Daiya products!!!!! They make a cream cheese which is awesome because Gregory LOVES bagels. I asked him if he wanted to try this . . . preparing for him to say no because he is not good about trying new things. . . and to my surprise,  he said yes! And loved it! Yay! Another thing to help him feel more normal with his diet. (Well, he probably doesn't even care . . . its more his mama.)

 

Thanksgiving

Thanksgiving was very low key this year but very nice. The night before we went to dinner with Papo and Mimi. Had a yummy dinner at Olive Garden!  Gregory had the chicken tenders and spaghetti.

We came back and decorated their Christmas Tree.

 

And then Papo gave him his old hot wheels from when he was a little boy. So special. 

In the morning we made brownies for dessert. Galactosemia friendly dessert.

Of course play with trains.

 

Of course snuggle mama. 

 

Parent Teacher Conference

Hi all! Fall is finally coming here in AZ.  Which means parent teacher conference time. Gregory's dad and I met with Gregory's teacher last week. She said for the most part he is doing better and progressing . . . but he is no where were he needs to be. She said he would benefit from a smaller classroom. She said he does much better one on one and she just can't do that with him as much as she would like to. She said it wouldn't be anything that would happen this year but maybe talk about it at his IEP for next year. Hmm . . . And more than likely he will need to repeat kindergarten. My mommy's heart got a little teary eyed hearing this. Its like you know your child's daily struggles but hearing it in a more formal atmosphere makes it all more real. After the meeting I asked Gregory's dad what he thought . . . he is always good about putting things in perspective . . . he said Gregory has come so far since August, who knows where he'll be at in May. And he's right. Another example of how I'm always reminded to just take life one day at a time. No since in worrying. Just going to work more with him at home. Going to look at getting him a weighted vest to wear at school. Do more heavy work. See what happens.

Its Gregory's Galactosemia Month!

 

 

Some of you know I am a stylist for Stella & Dot jewelry. 

 

I'm declaring November "Gregory's Galactosemia" month!  My song to him is "You are my sunshine". So it was so fitting when Stella and Dot came out with this necklace! I will be donating all proceeds from this necklace this month to the Galactosemia Foundation.

Star Student

Gregory got to be Star Student this week at his school!!!

Today he had to bring a poster about him and talk about it to his class! And . . . I am so proud of him . . . he is finally writing his name!!!! I'm so proud of this boy right now. He's making big strides right now!!!!

Raffle

Feeling very blessed. We have 17 items to raffle off for our fundraiser . . . and counting!

*Choice Carpet Cleaning certificate

*Smarty Pants certificate

*Stella and Dot jewelry

*Home decor

*Wine

*ASU football tickets

*Arizona Cardinal tickets

*Photography sessions

And much much more! 

Fall Break

Mamo came to visit us during Gregory's fall break. She came to spend time with us and watch Gregory while I was at work. It was so fun and we are so thankful for Mamo! We love her so much! 

Mamo bought him a basketball to practice his awesome basketball skills! 

They made Mamo's famous chocolate chip cookies of course! They put them in cute halloween bags and delivered them to my work and brought some to his cousins. 

They raced cars of course. 

We finally went on the Neighborhood Trolley where we live. So fun and free!

Took it to downtown Scottsdale.

Bought him so new batman jammies for winter. 

Fundraising Planning going on

We have been planning, planning, planning! For Gregory's Galactosemia's 2nd Annual Costume Fundraiser! 

Do you or anyone you know have anything to donate for our raffle? Or funds/connections  to contribute towards food? 

Let us know! All proceeds will go directly to the Galactosemia Foundation! 

Kindergarten school picture!

Karate

I've always though martial arts would be something so good for Gregory. He started Karate through Young Champions about a month ago. I think he likes it. Parents don't get to watch. :(Good sensory input! Good self control! Good for self esteem! Good for strength!

Product Find

I saw these in a magazine and now they are a staple on my grocery list. NO DAIRY!!! Gregory loves them!!!! Yeah, I could make them on my own . . . but this is so much more easy!!!!

2nd Anual Costume Party Fundraiser

Picture courtesy of Birdiegirl Photography

You all are invited!!!!

When: Saturday, November 2nd, 2013

Time: 6:00 p.m. 

Where: Phoenix, AZ (Leave comment for exact address.)

There will be food, games, drinks, raffle, bounce house and much much more! 

www.gregorysgalactosemia.blogspot.com

Kindergarten Update

All in all the school year has been going good . . . until last week that is. It was just an overall rough week. 

I need to think of a name for when Gregory acts "crazy". I often refer to it as "crazy" Gregory but thats not nice. I dunno . . . its his alter ego  . . . maybe instead of Gregory he is being, "Senor Loco"???? I'm game for any suggestions. 

Anways, what does "Senor Loco" look like? I can't even describe it . . . its just off, weird, intense, agressive, sensitive, snotty, disrespectful, not obedient, hard, difficult, cranky. 

Sounds fun, huh? 

Whats going on? 

I"m not really sure .  . . . mommy brain of mine cannot figure it out. I think its one or many of the following . . . daddy being out of town, school being hard, not having OT, friends not being nice at school, the heat, his lack of vocabulary . . . 

I don't know. 

I do know at school (so at home too) they are working on the following goals for Gregory:

~Write his name

~Hold a pencil the right way

~Respond appropriately to situations

~Two way conversations

~Articulation

~Colors

~Count to 20 (he can now do 25)

~Shapes

~Identify 15 of the 26 letters

~Self awareness

~Math language

So far so good!

Gregory is already into 4th week of school! Can you believe that?! Crazy! My little kindergartener. 

So far so good . . . his teacher says he's doing well for the most part . . . is so sweet . . . but wants to touch everyone and be in their personal space. He doesn't want you in his be wants to be in yours. This is something his Occupational Therapist has been working on as well. 

Gregory has an I.E.P. (Individualized Education Program). It was done in the school district he was in for preschool. Now we're in a new district so they need to re write it. I have a meeting with "his team" on Wednesday morning to do this. I've already met the speech therapist and I talked to the occupational therapist on the phone this morning. They both seem so sweet. 

I'll keep you all posted on Gregory's goals and how he is doing. 

Then there is the whole lunch issue. He has yet to eat his sandwich at lunch. He'll eat some fruit and his fruit snack. But not his sandwich. Urrrr.   

And then one day last week there was an opened package of Combos, cheese filled pretzels! We've talked to Gregory about not taking food from others as he cannot have any dairy. Scary. Talked to his teacher. She was going to talk to kiddos about not sharing food. We new this day would come. Joys of having a child with a metabolic disease. 

First Day of School

Gregory started kindergarten yesterday! 

The first day went great! We love Mrs. Brown! She said Gregory did great! 

I'm so excited for this new school year for you bug! You are going to do great! 

I love you! 

 

Fundraising Time

We are in the planning stages of our 2nd Annual Costume Party to raise money for Gregory's Galactosemia!! 

It will be 11/2/2013. 

Hope you can come! 

*If you or anyone you know has anything to donate for our raffle, please leave me a comment below! 

One week from today!!!

One week from today, this little boy starts kindergarten!!!!! I am so excited! I hope and pray he does so good! I will keep you up to date as we embark on this new journey! I'm gonna miss this little guy while he is in school all day. :(  I know its going to be so good for him!

The 4th of July!

The 4th of July was a little different this year. We tried to make new traditions. 

We wore our flag shirts we made from Pinterest ! Papo came over (Mimi was in Chicago) and we went and got the drum set papo had been saving for Gregory out of storage! Gregory loved them! 

For dinner we had king crab legs. It was Gregory's first taste. He did not like it. So I popped 2 hot dogs in the microwave. Hebrew National of course! And we had fruit and potato salad! 

Gregory was in charge of putting sprinkles on the brownies. Also, an idea from Pinterest! All Galactosemia safe! 

Papo left and we just relaxed a bit and then to go see fireworks! 

I thought I was the only one with the genius idea of finding a place to park to watch them. WRONG. Fireworks go off not too far from our house. We pulled out to main streets and they were packed! I will say the  parking garage I had in mind was available! They were charging $10 cash to go in. I didn't have any cash on me but the guy let me in anyways!  

They were so beautiful! A few minutes Gregory grew bored and asked to play with my phone. Oh well. LOL

All in all it was a great day! 

Ain't it hot! Hot! Hot!

It is HOT here in Arizona! Looking for ways to get cool!!!! 

A great place here in the valley for any kid is the Arizona Science Center !!!! So much to do here! So fun! And there is AC!!!! We went on saturday. Good sensory stuff to do there too. If you haven't already, go check them out! 

 

Happy Fathers Day!

Happy Fathers Day to all the daddys out there! 

Thank you Tommy for being such a great dad to Gregory!! 

Fundraiser

I just got the new newsletter from the Galactosemia Foundation   and they talked about a fundraiser they are doing. All the proceeds go to the Galactosemia Foundation! They are so cute! Check them out!

http://www.etsy.com/shop/CrazyTownCreatures 

Yeah!!!

We just found out today Gregory was accepted to Arcadia Neighborhood Learning Center Elementary School in the Scottsdale school district for Kindergarten!!!!!

This is an answer to prayer as we felt this school would be the best fit for Gregory! They have a more hands approach to learning (in a nut shell). 

As you know . . . I have to know the plan . . . and to know where Gregory is going the beginning of the summer is just so awesome! So glad I don't have to wait! 

2 Year Anniversary!!!

June 1st was this blog's 2 year anniversary!!!!

Thanks for all the support!!! I'm so glad I started this blog. I love being able to help other families and thank you to all the families that have helped me! 

Hugs,

Melissa

Summer Time!

Gregory is officially done with preschool! You did it bug! Here comes kindergarten!!!!

We have a fun summer planned with learning to swim, Occupational Therapy, Speech Therapy, Physcial Therapy, bike ridding, Big Surf, The Arizona Science center, Summer Movie fun, books, family, The Zoo, bowling, church, learning, improving self help skils . . . 

Whew, I'm tired already! I really want to soak up this summer with Gregory before he starts school full time. Tear. :(  

You're making leaps and bounds bug! I'm so proud of you! 

I love this boy. This boy loves to dance.

Therapy.

Gregory is back in OT again! We love our therapist! We're going to Fiesta Pediatric Therapy! They are great. He goes every week! 

He'll hopefully go for Speech and Physical Therapy as well! Keep you posted!

This mama needs to brag for a moment . . . Gregory is doing so well in some areas that we have waited a long time for . . . and this mama is so proud! 

1. (TMI) He is finally going #2 on the potty all the time!!!!!!! For those of you who know us well, we have been we have been waiting on this a long time!!!! No more poopy pants!!!!!!! 

2. He can get dressed all by himself!!!! Thanks to his daddy and his step mom working with him he can now do it!!!! Wahoo!!!! Saves mama time in the morning. :) 

3.  He is getting much more comfortable in the pool! To those of you who know us well, this has been a huge struggle summer after hot hellish summer of him not wanting to go in the pool. He has taken swim lessons every summer since he was born. Well, I'm committed to taking him in the pool every day on the days I have him and its paying off. By the end of the summer he will be swimming! He has to! Its Arizona! And it doesn't cost anything!! Well, most of the time. 

Social Media

Just wanted to make sure you know we have a page on face book called Gregory's Galacotsemia ? Come check it out and "like" us. 

I have my own personal Pinterest account. I like to post some recipes and sensory stuff! Its a great resource!

IEP

Gregory had his IEP meeting a few weeks ago. All in all it went really well. Kind of big one since this is the one that will carry him into Kindergarten!!! Cannot believe my little boy is going to be in Kindergarten!!!! 

I'll try and give you just a general idea of how it went. Although Gregory has made progress, he is still delayed cognitively, in speech articulation, and motor skills. 

We all worked together to come up with goals that will best help Gregory in all these areas. The IEP was very detailed so his new teacher will know exactly how to best help Gregory. He will benefit from the use of a part time aid. He will receive speech therapy and Occupational therapy. I'll keep you posted on any new information!

Easter

Better late than never. Easter was nice. Just met Papo and Mimi at church  . . . Back to our house for lunch. All Galactosemia friendly:

Ham

Rolls

Salad

Fruit

Chips

Deviled Eggs

Oven roasted potatoes

So yummy! 

Gregory was getting restless inside church so went outside to let him run around and had fun taking pictures.

Easter Egg Hunt!