Brag Day Wednesday!

Assembly_Reqd · September 2012

Post those brags!

grbnik · September 2012

I had both kids get ear tubes on Monday and didn't lose my sanity with recovery!

malcivar · September 2012

Christopher can now sing the ABC song start to finish. He always could to some extent but now he's got the melody right and can even sing the last part "Now I know my ABCs...." He's on 'repeat' with it now but it's still the cutest thing to hear, most especially when he gets to L M N O P because it sounds like "ememememememoooopee".

grbnik · September 2012

malcivar:
Christopher can now sing the ABC song start to finish. He always could to some extent but now he's got the melody right and can even sing the last part "Now I know my ABCs...." He's on 'repeat' with it now but it's still the cutest thing to hear, most especially when he gets to L M N O P because it sounds like "ememememememoooopee".

K does that too during that part- it is adorable.

funchicken · September 2012

We started going to a new church a few weeks ago, and they have a preschool religious education class that meets during the service. DD1 went for the first time last Sunday, and she did great!!! When I dropped her off I stayed for a few minutes to make sure she was comfortable and paying attention to the teachers, and when I picked her up at the end they had a glowing report for me

I actually got to listen to the sermon instead of entertaining squirmy kids in the parking lot

Assembly_Reqd · September 2012

Nate has a placemat we just got a couple of weeks ago that has the ABC's written on it. After lunch we have been talking about letters and doing some spelling.

"Let's spell cat."

"C" and he points to c (I also sign the letter when I speak it)

"A" and he points to a....

So last Friday we were doing this and we were spelling DOG except I screwed up on the signs. I signed a "q" instead of a "g". He looked at my sign, seemed a bit confused and then pointed to the "q" hesitantly.

Just a bit more proof that

a.) our kid is prettty smart even if he doesn't talk and

b.) we made the right choice to use ASL as a way to communicate. He clearly is using the visual support for learning. (So what if it is a DOQ and not a DOG!) Stick out tongue

lite-bright · September 2012

A few nights ago, DD1 and DD2 were having some M&Ms. They've both been very interested by favorite colors lately. DD1 turned to DD2 and asked, "Elsa, do you want this blue M&M because blue is your favorite color?" and then gave it to her. Such a sweetie.

Unbuckling her own car seat chest-clip is a sticking point for DD1. She can do it, but about 40-50% of the time it's a struggle that requires multiple tries, frustration and tears. Sometimes I unclip it myself (sometimes she's okay with that, sometimes she flips out), sometimes I give her time and encouragement until she manages it on her own, sometimes I deal with the melt-down.

Recently we were running late to preschool and I told her if she couldn't unclip it on her first try, I was going to help because we didn't have much time. She gave it a try, couldn't get it, and seemed to be on the verge of flip-out. I was starting to say something when she instead asked me for help, let me unclip without crying about it, and we moved on.

It was a small thing, but I was really happy that she showed more flexibility than usual.

JoJoGee · September 2012

The last time Lily was evaluated (May), she had the fine motor skills of a 7 month old. But, they seemed to be improving the past couple of months. Just recently her nurses have made several comments about how her hand eye coordination has really improved and how she is handling her toys so much better. Then, on Monday, she pointed for the first time! The best part was when Lily realized we knew what she was pointing at. She was so proud of herself.

MrsBalletStar05 · September 2012

DS2 is SIGNING!! He can do milk, more, please, and eat now. It has really taken off the past couple days. I'm so excited to communicate with him! Also, over the weekend he gave me 3 kisses, I have only gotten one kiss before, ever. So amazing.

MrsBalletStar05 · September 2012

Also, DS1 ordered his own drink and meal at a restaurant over the weekend which I thought was so big snd grown up of him :

adge1119 · September 2012

my first brag is about me

-i nominated the doctor i work for, for an award bring given out by the global genes project. lo and behold he won! but he cannot attend the awards gala. i was speaking with the president of the organization and after telling her about our clinic then talking about xavier she as me if i could come! so next thursday i get to go to california, attend a gala where i get to accept the award from some guy that's on grey's anatomy, friday attend a patient summit and a movie premiere. i am super duper psyched for all of it! not only because i get a mini vacation to some place i've never been but i get to meet extraordinary patients, advocates, doctors, and researchers involved in rare diseases.

the second brag is going to be a shout out to kennedy krieger...i love all of our doctors but today was our first visit to the rehab clinic. the doctor was superb and super nice. he said yes to botox then immediately got on the phone and called their intensive rehab program and wanted us to go take a tour today (which we did). we then went to our already scheduled pt evaluation after which we met the intensive program director in the lobby who immediately said "is this xavier" then went to the program and took our tour. it's this kind of customer service that should be everywhere!

malcivar · September 2012

Assembly_Reqd:
So last Friday we were doing this and we were spelling DOG except I screwed up on the signs. I signed a "q" instead of a "g". He looked at my sign, seemed a bit confused and then pointed to the "q" hesitantly.

He was probably thinking "mommy's so silly, she can't spell dog but we'll go with it anyway ...."

Assembly_Reqd · September 2012

adge1119:

my first brag is about me

-i nominated the doctor i work for, for an award bring given out by the global genes project. lo and behold he won! but he cannot attend the awards gala. i was speaking with the president of the organization and after telling her about our clinic then talking about xavier she as me if i could come! so next thursday i get to go to california, attend a gala where i get to accept the award from some guy that's on grey's anatomy, friday attend a patient summit and a movie premiere. i am super duper psyched for all of it! not only because i get a mini vacation to some place i've never been but i get to meet extraordinary patients, advocates, doctors, and researchers involved in rare diseases.

OOh how fun! I hope you have a great time!

adge1119:

the second brag is going to be a shout out to kennedy krieger...i love all of our doctors but today was our first visit to the rehab clinic. the doctor was superb and super nice. he said yes to botox then immediately got on the phone and called their intensive rehab program and wanted us to go take a tour today (which we did). we then went to our already scheduled pt evaluation after which we met the intensive program director in the lobby who immediately said "is this xavier" then went to the program and took our tour. it's this kind of customer service that should be everywhere!

The program at the Fairmont School? They either call it STP (specialized transition program) or FIT (focused intensive therapy) We were very pleased with our outcome and all the therapists were great. Good Luck to X!

Soapstone · September 2012

I can have full conversations with Amelie in the car now. Usually along the lines of:

"Hungry, hungry!"

"Oh, you're hungry. Do you want crackers?"

"No!"

"Do you want a pouch?"

"No!"

"Do you want applesauce?"

"Apple? Yeah, apple. Hungry!"

adge1119 · September 2012

Assembly_Reqd:
Nate has a placemat we just got a couple of weeks ago that has the ABC's written on it. After lunch we have been talking about letters and doing some spelling.

"Let's spell cat."

"C" and he points to c (I also sign the letter when I speak it)

"A" and he points to a....

So last Friday we were doing this and we were spelling DOG except I screwed up on the signs. I signed a "q" instead of a "g". He looked at my sign, seemed a bit confused and then pointed to the "q" hesitantly.

Just a bit more proof that

a.) our kid is prettty smart even if he doesn't talk and

b.) we made the right choice to use ASL as a way to communicate. He clearly is using the visual support for learning. (So what if it is a DOQ and not a DOG!)

haha i love this...he was probably like...man, she's sooo wrong but i'll go with it. lol

yup, it's at the fairmount school. everyone was so nice and was thrilled to see us. i'm so happy that they saw his potential with starting to take steps!

d.f · September 2012

We had our f/u with the Developmental Pedi today. We last saw her in April. We just pretty much talked about DS's progress. She was impressed and said she loves appointments like ours. Really DS has made incredible in all areas. She seems to think we're doing all the right things. She answered all of our questions and as long as our insurance covers it she'll put in an order for genetic testing (I think Fragile X and Chromosomal Array).

It was a great appointment.

JenGK · September 2012

Six weeks into kindie, and DS is already reading sight words. He is ahead of the curriculum!! Here's a video link (going to leave it as public for just a while).

https://youtu.be/TuqKiFkmv98

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