Gabriel updates

Intensive feeding day 30

2012-01-31T22:43:00.000-05:00

Tuesday
8:45am-9:30am - Meal 1
Ms. Ashley was back in the room feeding me where she left off yesterday.
SIS CAME TO VISIT during my break today!

Gabriel you don't have to be so dramatic!

This is my home away from home Sis.

What can we play with Bro-Ther?

Lets leave the 'jungle' and go play in the hall, Sis.

ooo that sounds fun Bro-Ther,

Okay I will count... one, two, TREE

That was sure fun Bro-Ther!

Ya, this is my favorite place to take a moment away from feeding therapy!

11:45am-12:30pm - Meal 2
Therapy said Ms. Ashley looks like a natural. She is doing a very good job feeding me!
12:00pm-2:00pm - Nap time
I even rocked nap time today!
2:45pm-3:30pm - Meal 3
Ms. Ashley got the okay from therapy to feed me! She completely rocked!
3:45pm - head home
Bro-ther

What sis?

Give me a big hug!

Um, EW, Sis!

But I love you brother!

No, Sis!

I'm Cute!

Sis, you are a mess!

A cute, lovely, little sister mess?

Um, really sis?

Hehehe

Bro-ther, give me that!

Now it is time for me to read.

Isabella, are you going to share the pictures with me?

NOPE.

Sis, I do love you and your silly backside!

Love you too Bro-Ther not so much your stinky backside!

Mom's notes -
Ms. Ashley from Loving Hearts, Little Hands childcare in Grand Haven did an amazing job learning how to feed Gabriel. You forget how many little things you have picked up in therapy though the years. It was interesting to watch someone who did not have all the background, learn how to feed Gabriel. I am so happy with how well things went. I know Gabriel is in amazing hands while he is at childcare!!!

Gabriel had a VERY 'wet' cough this morning. Therapy sped up the reading of Gabriel's swallow study. Ms. Kate has not had a chance to type up all of her findings yet but she did tell me what she saw. Gabriel is aspirating more than originally thought. He has the worst kind of aspiration, Silent. Gabriel does not cough, choke, make noises, or anything else when liquid enters his lungs. We will be having a meeting tomorrow to discuss what this means for Gabriel's drinking and feeding at this point. This too will be a blip in our radar down the road. I just want to make sure that we are keeping Mr. Gabriel safe.

Intensive feeding day 29

2012-01-30T22:38:00.000-05:00

Monday8:30am - weigh in and measure
I am rocking out. I have gained 2.2 lbs in the short time I have been at feeding therapy!

8:45am-9:30am - Meal 1
Mommy fed me my meal just like always. And I rocked out!

11:45am-12:30pm - Meal 2
I go to the best childcare EVER! Ms. Ashley came to see me!

Loving Hearts, Little Hands in Grand Haven is the BEST childcare center EVER!!!

12:00pm-2:00pm - Nap time
I got to skip nap time to do a swallow study.

2:15pm-2:45pm - conference with team
You will have to ask mom.

2:45pm-3:30pm - Meal 3
Ms. Ashley fed me this meal.

3:45pm - head home
Look at what I picked out Sis!

What Bro-Ther?

I don't know sis, WHAT?

BALLOONS,

BALLOONS,

BALLOONS!

Oh boy,

I love balloons Bro-Ther!

I know Sis!

I love it when mom goes to the dollar store!

Mom's notes -
Childcare training ~ I am so excited to have full participation with our childcare (even if I mix up everyone's names)! We have witnessed childcare's saying they can no longer service a child because of the added time they are going to require with this feeding program. It took us so long to find the perfect childcare facility. I am so glad that they are willing to take on Gabriel's challenges! What an amazing place! I know my kids are in good hands each and every day!

Swallow study ~ We have some findings that answers some questions and creates many more questions. Gabriel did very well with his liquids out of the cup. He was even able to handle his liquid reduced to half nectar (this means half the nectar packet of Simply Thick per 8 ounce). However, when they did one step below that (no thicker) problems occurred. The liquid sat in Gabriel's throat. They could not get Gabriel to cough it nor clear his throat. (Further analysis of the film will let us know better what exactly happened but it is suspected that he aspirated the liquid into his lungs.) When they fed him his pureed foods he did very well. He had no problems with pureed, gritty or finely chopped. That being said he has had foods coming out his nose after eating them. We found that Gabriel is refluxing foods into his sinus cavity. That is why he is snotting out carrots, beans and whatever other creations he is eating. This may be why we can not get rid of sinus infections. It is not good for the sinus's no matter what but the only thing we can do for it is try to get Gabriel to allow us to do sinus cleanses. He had issues with foods that were thicker. He has thrown-up several times when his foods were too thick. The swallow study will be looked at closer this week to see what exactly is going on. It is believed that due to Gabriel's low muscle tone his esophagus is having a difficult time pushing the thicker food down toward his stomach. The more bites of thick food Gabriel takes the harder his esophagus has to work to push his food down which tires Gabriel out causing him somewhere in there to choke, gag and throw up. To take care of that right now we are thinning thicker foods (mac and cheese, stew, ect) with fruit puree's. We will have the official findings of the swallow study later in the week.

Team meeting ~ Gabriel is GRADUATING Wednesday, February 8th! We are so excited for him! I will shadow Gabriel the 9th and 10th to answer any questions and to make sure everything is in place. Isabella will have tubes put in her ears on the 13th and I will hopefully, cross your fingers, get to return to work on the 14th. I can't believe how far Gabriel has come. We are working to get everyone on board to keep Gabriel in the program all day each day and we will be rocking and rolling.

mine

2012-01-29T23:09:00.000-05:00

MOM, DAD

GABRIEL HAS MY TOYS!!!

Quit yelling Sis!

Give me my toys!

Isabella, you are always stealing things right out of my hands, do I complain? NO, I don't.

But it's, mine!

Your point Sis?

These toys are mine and you should give them back.

I should huh?

YES!

Fine, here.

Baby, are you okay baby?

Your baby is fine!

Poor baby, did he scare you?

Of course I scared it!

Bro-Ther, you don't have to be so mean!

Here Sis, you can see my Elmo for a moment.

Thanks Bro-Ther!

Ya, I know, I am the best!

You're something Bro-Ther!

Abby doesn't have pants on?!?!

2012-01-28T23:26:00.000-05:00

Thank you Lala for helping to do my hair this morning!

Mama said she would look into picking up a little gel to do my hair more often.

I will look like a rock star!!!

If you get to do your hair funky Bro-Ther, what do I get to do for fun?

Oh I know Bro-Ther...

I get to go around without pants like my hero Abby Cadabby!

HAHAHAH Sis, that is hilarious!

Yup, I thought it was pretty funny!

Sis, do you think mom and dad will let you get away with that?

They don't have a choice Bro-Ther.

How do you figure Sis?

I will just keep taking my pants off when they put them on...

Sis, I tired that, it doesn't work.

They haven't worked with me yet, it WILL work!

We will see sis!

Yes, we will!

MOM, DAD SIS TOOK HER PANTS OFF!!!!

I see them putting pants back on you Sis, I bet they use duct tape on those too!

Don't look at me like that, I am cute! Just watch this video Sis, it will make you smile and forgive me!

Mom's notes -
Gabriel is showing off. I am not sure how much I am allowed to let him try without taking us backward. He continues to want to try new things.
In Gabriel's words:
OOOO dad, what do you have?

Salmon, I have never tried salmon...

Give me a little piece Daddy, think of it as finely chopped.

Wow, that was tasty, let me see if there is any left on your plate.

Just a little bit more...

Yes, he ate a couple very little pieces of salmon. We weren't sure about letting him have any of it but he kept asking. Finally we decided to give him a very small piece that he wouldn't have to chew. He did not gag and he liked it enough to ask for more and when it was all gone he tried to get any little pieces that were left. WOW! I don't want him to go against his therapy. I never imagined he would ask for food or even try it therefore I never asked if we should let him try other foods.

Intensive feeding day 28

2012-01-27T23:26:00.000-05:00

Friday
8:45am-9:30am - Meal 1
I know, I am awesome!

11:45am-12:30pm - Meal 2
I rocked all of my meals like always.

Hello Gabriel, you are the bestest!

Call me Doctor Gabriel!

12:00pm-2:00pm - Nap time
Who needs a nap when you have a box?

Boy this is fun!

2:45pm-3:30pm - Meal 3
Sometimes there is a lot of sitting around at therapy...

I found my belly button... maybe it has lint in it.

These are the cleanest teeth every! Yes, I let mom brush my teeth before each meal today! (mom's note - before so if he does get worked up to the point of throwing up he doesnt lose the meal we worked so hard to just feed him.)

3:45pm - head home
Look Gabriel, Daddy is teaching me how to do a thing called a push up.

I already know how to do push up's Isabella, check this out!

Gabriel, you did not do a push up.

Yes I did, with daddy on his back.

No Gabriel, that doesnt count.

I say it does too count, so it counts.

Brother, check this out...

WOW, that is cool, let me try!

Bro-ther, run here comes mommy.

What drawing on the wall?

Remember, we are in this together Bro-Ther!

But mom...

Bro-Ther, can you believe mom is making us clean the wall off?

And the chair too Sis, clean that too!

Gabriel, you missed a spot!

There Sis, I say it looks good!

Ah what a fun night Bro-Ther!

Yes, it was!

Mom's notes -
Isabella will be having tubes put in her ears Monday, February 13th. After seeing the ENT for her first time today, it was pretty clear looking at her history of ear infections that this is where we were heading.
Extra notes- Gabe and I have tears in our eyes!!!! This is the first time he has just came up and tried anything. Not just tried... watch the video to see!!!

Intensive feeding day 27

2012-01-26T23:48:00.001-05:00

Thursday8:30am - weigh in and measure
I am still an eating rock star so of course I did AMAZING at my weigh in!

8:45am-9:30am - Meal 1
I am not a fan of this teeth brushing thing!

I eat everything they put in front of me. They need to stop trying to brush my teeth!

11:45am-12:30pm - Meal 2
Look, I hate getting my teeth brushed so bad that I cried during therapy.

12:00pm-2:00pm - Nap time
What time...

Oh heck no, mom check this out, I found your camera.

ZZZZZZZZZzzzzzzzzzzzzzzz

2:45pm-3:30pm - Meal 3
Yup I did it...

I opened my mouth for tooth brushing ASAP so that I could just get it over with!

3:45pm - head home
Sis

SIS

LALA

I Lala OOOOO

I love you too, now let me rest!

Mom's notes -
Therapy sent us home with a mission and a video camera. We are determined to get Gabriel to allow us to brush his teeth. After huge fights today Therapy decided to have Gabe brush Isabella's teeth while I brushed Gabriel's teeth. How did it go you ask... Not ONE single issue. Those little poo's played off each other and had a blast during teeth brushing time. We know what evening tooth brushing will look like from now on! So excited!
I also pureed some foods for dinner and thought I would share the pictures.
Carrots, Pears and Speghetti-o's

Carrot, finely chopped, gritty, pureed

Pear, finely chopped, gritty, pureed

Speghetti-o's, finely chopped, gritty, pureed

I am not a feeding therapist nor am I a food specialist. I am learning as we are doing. It is so fun to see Gabriel eat that spending hours on pureeing isn't so bad right now. (Ask me again in a few months).

Intensive feeding day 26

2012-01-25T22:58:00.000-05:00

Wednesday
8:45am-9:30am - Meal 1
Mommy always comes in to feed me my first meal of the day... today she used the nosy cup for my drinks.

11:45am-12:30pm - Meal 2
Mom did this meal too... she did my nosy drinks again...

12:00pm-2:00pm - Nap time
NOOOOO!!!!

2:45pm-3:30pm - Meal 3
Know what, my drinks have tasted funny. Wonder what mom is doing to them...

What is this thing?

My new drinks and nosy cup are coming home?

What is going on?

3:45pm - head home
I'm sorry I got caught being mean!

I'm very sorry for getting caught being mean!

I'M VERY VERY Sorry for getting caught being mean!!!

Sis, maybe you should just say sorry and leave it at that!

But I'm not sorry for hitting!

Maybe you should be.

Nope, I don't think so.

Mom's notes -
In the cooler you will find carnation instant breakfast, a nosy cup and a coupon for simply thick...

What does this mean?

We are up to 50% pediasure and 50% Instant breakfast...

Is that a nosy cup at home?

YES IT IS! Nosy cup SUCCESS at home!!!!

Intensive feeding day 25

2012-01-24T22:01:00.002-05:00

Tuesday
8:45am-9:30am - Meal 1
Mom fed me, I am awesome!

11:00pm-11:30pm - Meeting with social worker
Read mom's notes. I got to play while mom was in her meeting.

11:45am-12:30pm - Meal 2
Mom tried to bush my teeth. I was not happy but I let her.

12:00pm-2:00pm - Nap time
I sure needed a nap today!

2:45pm-3:30pm - Meal 3
I was not going to let mom brush my teeth. I fought with her for 30 minutes before Ms. Emily came in.

I decided to open my mouth for mommy once Ms. Emily walked in.

I drank all of my drinks from my new nosy cup today!!!! That means I did not use the squeeze bottle!

3:45pm - head home
Bro-Ther, Mom said you were a stinker today.

No, Mom was the stinker!

Why do you say that?

I told mom I did not want my teeth brushed and she still did it.

What the heck do you have against tooth brushing?

It feels funky!

It feels good Bro-Ther!

Sis, we are going to have to agree to disagree!

At least you ate lots of food!

Yup, I am a rock star eater!

Mom's Notes -
No camera's in the observation rooms. That is the new rule. I am not completely sure but I believe it has something to do with there being only 6-8 intensive feeding programs in the United States and not wanting to share secrets. I could be wrong. The second week in we were told that they had a new rule about recording devices. The would be more than happy to burn us a DVD of the feedings but we could not independently record any part of the therapy. This is all okay with me, I will respect the hospital's wishes. I just want to explain why I will no longer be posting pictures.
Caregiver training. Each person will require 2-3 days of training. They may come in in groups of 2 but the exposure to practicing is lessened as more people attend. Therapy will create a DVD to help us further train our caregivers and I will shadow Gabriel for a couple days to continue training and offer assistance.
Supplies. What supplies don't we need.... We need supplies for Home, Daycare, School and Travel (Mimi and papa's house when not traveling)
3-4 - car cosco car seats (very specific seats) (If you know of any being sold PLEASE contact me! It is okay if they were in an accident due to their never going to be used for a car seat)
3-4 - timers
3-4+ - sets of spoons (yup he even has to use a special spoon)
3-4+ - nosy cups
3-4+ - three section plates
3-4 - scales that weigh in grams
3-4 - Binders that include data sheets to be filled out each feeding
That is all I can think of right now but that is already hundreds of dollars worth of stuff we need in the next two weeks. CRAZY... If it is what it takes to continue on this path we will make it happen!!!
The future. Not that we leave the kids for any length of time but we are going to have to stick very close to them just like when Gabriel was tube fed. We will have to be there to feed Gabriel unless one of our caregivers happens to be around. We are able to train others but the quality of training tends to not be as good as when the person goes to the hospital and learns. I want Gabriel comfortable with who feeds him! That is what is important.
Questions that came up from readers:
Why 5 meals each day? Gabriel is unable to get enough calories in without eating five meals a day. His stomach is very little and it is working very hard to get though the food Gabriel is eating. As his stomach grows so can the size of the meal. This will be monitored as we go back for check ups.
What is the difference between Puree, Gritty and finely chopped? When I make food on Sunday I will take pictures of each so you can 'See the difference'. You can puree almost anything. Most fruits and vegetables can be made gritty (think regular apple sauce). Finely chopped, again can be made mainly from fruits and vegetables. I will have to post some pictures to show what finely chopped looks like. (Again I am not an expert at this, I am just learning as I need to create these for Gabriel)

Intensive feeding day 24

2012-01-23T22:19:00.001-05:00

Monday
8:30am - weigh in and measure
Up 9oz... yup, I rock!

8:45am-9:30am - Meal 1
I tried open cup drinking for the first time today. They used a 'nosy cup' with me.

Guess what... I rocked it!

11:45am-12:30pm - Meal 2
Ten more drinks out of the nosy cup! I am shocking the socks off the feet of everyone watching

Socks belong on the hands anyway!

12:00pm-2:00pm - Nap time
Too excited to sleep

I need to PLAY!

I managed to skip nap time by tricking Papa!

2:15pm-2:45pm - conference with team
Mom came out with a huge smile and gave me HUGE hugs, wonder what went on in there?

2:45pm-3:30pm - Meal 3
They reduced my Pediasure by 25%.

I am now able to have 1/4 whole milk in my Pediasure again.

I am doing so good at the nosy cup that I will get to start using it during my meal time tomorrow. (it was in trial time before my meal today)

Yup, I am that awesome!

3:45pm - head home
Gabriel, I heard you had a good day at therapy today.

Ya, it was okay...

Well, mom and dad keep talking about it... what's up.

I don't know sis, something about her meeting today.

Well shouldn't you know?

They are always throwing something at me... who knows what is next.

So you don't want to know?

Nope, I'm good.

Bro-Ther, you are crazy! Everyone else wants to know the big news!!!

So are you going to tell everyone Gabriel?

I'm too busy...

Dang it, duct tape again...

OOOOO, me too...

Mom's notes -
The bad... Gabriel was not thrilled to have tooth brushing show up at home, under mom's control. I had a very difficult time but we did not have a complete breakdown. I can't wait to take the video below to therapy tomorrow to learn what I did wrong so that we can correct it and do better tomorrow.

Review of our goals for feeding therapy -

3. We want Gabriel to be off the bottle. Done... From the sounds of it Nosy cup will be home by Friday if all goes well!

2. We want to be able to brush Gabriel's teeth with out all of the drama. Done... The drama is minimal compared to where it was. We are working on this an will have it by the end of the week!!!!

1. We want Gabriel to eat. Done... We are on purees, gritty and finally chopped foods (this exceeds the purees we thought we would end on by a LOT)! We would like to work him off the pediasure. Currently working on this...

WOW, WOW, WOW, WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I sat down in our meeting and Gabe listened in on speaker phone. We have one goal left to meet... Caregiver training (other than parents). WHAT, that's all? We can not progress farther on Gabriel' eating due to his weak muscles in his jaw. He will need to work those muscles up each day over the next few months before he is able to try solid foods. He is will achieve open cup and tooth brushing by the end of the week and we will also be down in the amount of Pediasure Gabriel needs. UM, we are only 24 out of 40 days in treatment. What does this mean? Well, we are working on a schedule for training our caregivers. Daycare has to be trained so they can feed Gabriel is 8am and 3pm meals, School has to be trained so they can feed him is 11am meal, Grandma and Papa need to be trained so Gabe and I can have a break once in a while. We have until February 10th to get everyone trained. If they are trained before then we are done before then. You read that correctly WE WILL BE DONE BY FEBRUARY 10th. Gabriel has exceeded therapy's expectations in every way. He has come from only drinking bottle and eating once in a while to eating 5 solid meals a day in under 40 days. He has achieved more than any patient they have had before. Once Gabriel graduates from the program our jobs are by far from done. I will have to take at least two more days off work to make sure everyone is comfortable with Gabriel's feeds through the day. I will be his feeding coach and cheer team. We have a lot of pieces to get into place but the reality is that the end is in sight and the result are AMAZING.

What does this mean long term for Gabriel? Good question, I asked the same thing in our meeting. They believe now that Gabriel knows the world of eating he will take off. We will be back on a regular basis for check-ups to see where we are at and to get the next steps. They do not believe he will need additional therapy but if he does we will cross that bridge as we go. TEARS OF JOY!

tinkle tinkle little star

2012-01-22T22:15:00.000-05:00

Tinkle, tinkle, little star,

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Tinkle, tinkle, little star.

How I wonder what you are.

Sis, why are we singing tinkle instead of twinkle?

We just got out of the bath tub Bro-Ther.

SO?

Mom always makes us take a shower after our baths because she says we are tinkle monsters.

heheh oh that heheheh

Hey Bro-Ther, what did mommy make you for dinner?

"poo on a stick:"

No, Bro-Ther, that is what she tells Daddy she made when she wants him to just let her cook.

OOOOOOOO, I had Spaghetti-O's, fruit cocktail and peaches, what did you get?

That is so awesome, I had the exact same thing!

YUMMY!

LALALALA

What Bro-Ther?

Mom and Dad did it again...

I know, help me out and I will help you out!

I can't get it Sis.

Here, let me try Bro-Ther.

WHAT...

Were were just sitting here playing with our feet...

Mom's notes - Yup colored duct tape! Hopefully it will help put an end to the streaking going on here at the Purdy house. Hoping to potty train soon!

Diaper off one too many times

2012-01-22T00:48:00.000-05:00

Good morning!

Bro-Ther, I'm hungry!

Sis, you're always hungry.

Ya but I NEED my 'blue apples' NOW!

Sis, sometimes you are a little crazy.

Look at your sock on my hand Bro-Ther!

OOOO give me that!

Bro-Ther, sometimes I have had it up to here with you!

oooooooooo really?

Yes really!

I love you sis!

Heheh, I love you too Bro-Ther.

Hey sis...

Yes, Bro-Ther.

WE PARTY LIKE ROCK STARS!

OH HECK YA!!!

Sis, put your shirt down, you are scaring people away from our blog!

Speaking of scaring people away Bro-Ther, You look naked in this picture.

Ya, check out this video of us playing today. We are super cute!

Intensive feeding day 23

2012-01-20T22:33:00.000-05:00

Friday
8:45am-9:30am - Meal 1
It's official...

You are never going to guess it!

11:45am-12:30pm - Meal 2
Open cup starts...

No silly not today,

12:00pm-2:00pm - Nap time
I'm too excited to sleep!

2:45pm-3:30pm - Meal 3
MONDAY

3:45pm - head home
Daddy fed me my dinner tonight. I love Elmo and Daddy time!

Well, Bro-Ther, I love bath time!

Bath time is fun Sis!

You know what I love even more Bro-Ther?

No, what Sis?

Teeff time!

Oh, I dont like teeff time Sis.

Remember I hate toothbrushes!

You like them now Bro-Ther!

SSSSHHHH don't tell Sis!

Mommy it wasn't that funny!

Dear readers of this blog, You tell me if you think this is funny... Mommy said "Remember, we don't poopy in the bathtub. Do we Bells?" I said "No mommy, we only peepee." I just don't see why that is funny, do you?

Mom's notes - When the kids asked for their toothbrushes tonight I went ahead and gave them each their brush. I expected Gabriel to give his brush to Bells or hide it. Before therapy he would try to get rid of the toothbrush as fast as possible if he would even touch it. Instead he brushed his teeth and instructed Isabella on how to brush her teeth.
Well, we have gone as far as we can with foods with out teaching Gabriel how to chew. The next few weeks we will work on getting Gabriel to drink out of the open cup without choking and/or spilling. We will also work on Gabriel's chewing skills. Right now he does not have the muscles in his jaw to be successful at chewing. This is much farther than I ever expected we would get. Gabriel is a rock star! He is showing everyone how strong he is day after day. Today he allowed me to brush his teeth at therapy for 15 seconds on top and 15 seconds on bottom. This is HUGE for us! I am such a proud momma right now!

Intensive feeding day 22

2012-01-19T21:50:00.000-05:00

Thursday8:30am - weigh in and measure
Same weight as earlier this week... 29lbs!!!!
8:45am-9:30am - Meal 1
Daddy gave me my drinks!
11:45am-12:30pm - Meal 2
Daddy gave me my drinks AND bites!
12:00pm-2:00pm - Nap time
ZZZZZzzzzzz
2:45pm-3:30pm - Meal 3
Daddy rocked out!

I wrote him this song.

3:45pm - head home
Bro-Ther, Bro-Ther, Bro-Ther

Bro-ther, where are you?

Daddy, where are you?

Mommy do you like my hair?

BATH TIME!

Hurry Bro-Ther, get in!

HOHOHO

HOHOHO

Bro-Ther check out my towel, it is a puppy!

I like my ducky sis!

I like brushing my teeth Bro-Ther.

Look I put the toothbrush in my mouth and brushed for the first time ever.

Dang it Bro-Ther, i can't beat that.

Check it out Sis, Daddy did all of my feedings today.

He did a very good job!

I even acted pretty good for him.

I know, I am amazing!

intensive feeding day 21

2012-01-19T01:18:00.002-05:00

Wednesday
8:45am-9:30am - Meal 1
Well, meal one was a little rough. I was a stinker about getting my teeth brushed again but I tried very hard to eat my food like I was told. I just couldn't handle the texture of my chicken potpie and it got stuck in my mouth causing me to throw up all over the place. It was not my best moment. I am so glad mom was the one feeding so that there aren't pictures of this. I am sure she would take pictures and post them for everyone to see. How awful is that!
9:45pm-10:15pm - "food works" learning how to prepare food for Gabriel
Mom says she is excited to try my new gritty and chopped foods out at home. I am just excited to eat, what were these people thinking, trying to feed me wrong all of this time. I have always wanted to try foods and just haven't been able to!
11:45am-12:30pm - Meal 2
I tried all kinds of new food. This meal I tried gritty spaghetti-O's. MMMmmm, I do love me some tomato sauce!

Beep Beep, coming through!

Boy this place gets smaller and smaller each day!

12:00pm-2:00pm - Nap time
Always nap time.

It is a good thing I talked mom into letting me wear my glove to sleep!

2:45pm-3:30pm - Meal 3
Ms. Emily, I do everything you ask, including eating chopped spaghetti-o's.

Won't you please call me.

3:45pm - head home

Bro-ther, what did mom make you for dinner

Mac and cheese with a side of apple sauce, what about you?

The same thing... WOW, that's a first!

Mom's notes - Today was very hectic at feeding therapy. Gabriel had a rough moment during his first feed of the day but was able to recover nicely. I was so excited tonight when I was able to feed the kids the same thing. The only difference was that Gabriel had pureed mac and cheese and Bells did not. So exciting!

Intensive feeding day 20

2012-01-17T22:39:00.000-05:00

Tuesday
8:45am-9:30am - Meal 1
I am an all star eater! However, I have decided that getting my teeth brushed will NOT be happening today.

11:00pm-11:30pm - Meeting with social worker
I'm going to hide in here while mom is in her meeting.

I wonder if she will ever find me.

Mom, I am right here!

11:45am-12:30pm - Meal 2
Still not letting Ms. Emily brush my teeth but I think my eating makes up for it.

12:00pm-2:00pm - Nap time
Why yes, I did sleep in my glove.

It is my favorite prize for eating. Mom always makes me take it off but I managed to sneak one in bed with me!

2:45pm-3:30pm - Meal 3
I'm too tired to eat!

Do I really have to eat?

Hum, how can I avoid eating this meal?

Mom, check to see if I am running a fever.

Or maybe I need to look in your nose to see if you are sick mom!

3:45pm - head home
Who me?

No, no, no, it wasn't me!

Who was it?

Isabella did it, Isabella took the couch apart!

I did NOT Bro-Ther!

Yes you did, just admit it!

NO, NO, NO

Bro-Ther, come check this out!

Wow sis, it is the bestest tent ever!

I know, it has a Daddy inside.

What do you think Sis, dance party time?

You are not too tired, come on you know you want to dance party it up with me!

Okay, just for a minute Bro-Ther.

One more

Okay Bro-Ther, it is time for bed.

I'm not tired Sis.

Mom's Notes -Gabriel is eating amazingly. Today he ate more gritty foods. He ate Applesauce, peaches, green beans and carrots. Gritty is pretty different from smooth puree's. I am so excited! Gabriel has never tried gritty food before. I have tried to get him to eat applesauce a couple times, not realizing how different the texture is, only to have it thrown at me and on the floor. He is eating it just like he has been eating it every day. I am amazed! As you read in the blog Gabriel has decided to take steps backward on the tooth brushing. Even though it stinks is makes me see a glimpse of where we started. We have come so far! We will get teeth brushing back on board and continue to move forward.
Isabella and Gabriel are talking more and more every day. They have their language but they are also speaking more English. Isabella is so stinking smart. She is able to asks for what exactly she wants to eat and drink. She asked for 'please more apple juice please' and handed me her cup this evening. LOVE IT, way to go Sis!

Intensive feeding day 19

2012-01-16T21:52:00.000-05:00

Monday
8:30am - weigh in and measure
29lbs!
8:45am-9:30am - Meal 1
Mommy fed me so that therapy could see how we are doing. Guess who came to watch me eat...

11:45am-12:30pm - Meal 2
I will give you a clue. Look in my shadows!

12:00pm-2:00pm - Nap time
Yup, it is PAPA!

Papa and I had a lot of fun between feedings!

But after a while I was tired and needed some rest!

2:15pm-2:45pm - conference with team
I slept through mom's conference, you will have to read mommy's notes to find out what they discussed.
2:45pm-3:30pm - Meal 3
Papa and I had such a good day today!

Who needs to worry about eating when you have a Papa along!

3:45pm - head home
What a fun day!

BABY!

Give me my baby NOW!

Gabriel leave me alone right now!

Baby give me my baby!

This is not funny Gabriel!

Come on and give me my Baby!

Gabriel....

I just dont know why you are always picking on me Bro-Ther.

I should be pampered and spoiled...

Instead I always have to share with you.

You love me sis!

Sometimes I could just... just....

Hug you because you are my bestest Sister and I love you.

Mom's notes - Our meeting went VERY well today. The whole team came together to discuss Gabriel. Due to the holidays and Gabriel being sick we have not had a meeting in a month. Everyone is SO proud of where Gabriel is. He has passed everyone's expectations. He has his moments but who doesn't. If he continues on the same path he may be eating solid food before too long. He will not be eating it by the end of intensive feeding therapy but they will continue to see us on a regular basis to work with him. Today Gabriel started gritty food. He ate applesauce (yup, applesauce is not considered pureed. it has to be pureed to get it out of the gritty food category) and gritty pears. Gabriel did not flinch at either of these foods. It is believed he may speed through gritty food onto soft foods. It is completely up to Gabriel. Way to go Gabriel! Everyone is so proud of you!

Mommy notes - Honey bear/squeeze bottle

2012-01-15T22:38:00.001-05:00

Honey Bear/squeeze bottle -
The basics of the squeeze bottle.
1. Take a hair dye bottle or a honey bear bottle emptied and cleaned

2. Cut the top off the lid of the squeeze bottle.
3. Using tubing cut one end at an angle (inside the bottle) and one end flush (drinking end)

4. Tubing should fit SNUG when pushing it through the lid. Any air will cause the cup to not work.

These bottles are used in feeding therapy for many reasons. They can be used to teach children how to suck out of a straw. They can also be used to teach a child what to do when liquid is in their mouth. These bottles can be used wrongly and cause more damage than good. We had a therapist in the past who used one to try to force Gabriel to swallow. This therapist would push the straw into Gabriel's mouth and squeeze. Gabriel would be in tears and would choke but he would swallow. Gabriel had to learn how to allow the bottle to even be put near his mouth before we could move on with therapy. I am not a feeding therapist and do not claim to be a feeding therapist. I am going to write my observations and experiences below but I suggest consulting with a feeding therapist before trying any of these processes because if they not not done correctly they can cause more damage than good.

Squeeze bottles allow you to be able to push liquid into a child's mouth easily through a straw. Doing this can trigger a natural instinct of sucking which can assist a child into being a straw drinker. If Gabriel had been able to do this they would have switched him to Take 'n Toss straw cups because the straws are shorter until he had a strong enough suck to switch to a different cup. Gabriel does not have the natural sucking instinct therefore he will be transitioned to a open cup. Feeding therapy said that they never use the squeeze bottles without thickener. It is too easy to squeeze too much into a child's mouth which can take the whole process steps backward. We started on honey thick and have gone down to nectar thick. The next step is nectar thick in a cup.

When feeding make sure the bottle is upright. Note I do not have it as upright as I should and as the liquid gets down it will blow air bubbles if I dont fix it. We are told to always count to three that way the kid knows when the filling will stop (you are in charge of how fast or slow you count). Due to Gabriel not being able to suck we have to put the liquid into his 'cheek pocket' so that he can get the volume in without choking. I am not sure what the process is for 'straw' placement.

princess?

2012-01-15T22:05:00.000-05:00

Want me to read this book to you Bro-ther.

Once upon a time there was a beautiful princess named Isabella. Her Bro-Ther Gabriel did everything she told him to do.

The end!

Um, sis I don't really like that story.

Ya, it was kind of long Bro-Ther.

Once upon a time, there was a princess Isabella who ruled the world!

Bro-ther

Yes Sis.

Get over here and finish getting me out of these PJ's!

Okay Sis.

See, you do whatever I say Bro-Ther.

What if I stuff your leg back into your PJ's sis?

That would be rude Bro-ther!

Sis, Now is the time to finish your part of the deal and get this tape off me!

I'm too busy trying to get out of this onesie, you are going to have to wait.

Dang, you are slow sis. It is a good thing I figured it out, good luck with your onesie.

Mom notes

2012-01-14T23:23:00.002-05:00

Wow, we have only been in Intensive Feeding Therapy 18 days and we are making AMAZING progress on our goals.

3. We want Gabriel to be off the bottle. Today I was able to pack Gabriel's bottles up and get them out of the house. We will not be returning to the bottle for Gabriel. How exciting, I am amazed that we are already at a point where I know it is okay to pack up the bottles and get them out of the house! We are currently on the squeeze bottle. There are several versions of the squeeze bottle. Many parents of children with eating problems know the Honey Bear Cup in it's various forms. Feeding therapy uses hair dye applicators to achieve the same thing. They are not as cute as the Honey Bear Cups but they are more cost effective. I also believe they do not use the Honey Bear Cups because the applicators give them more control with the amount they are squeezing out. Next week we will be working on the open cup!!!!! Gabriel does not have the muscles and skills required to drink from a straw or a sippy cup. He is unable to work his tongue enough to suck. This means one less transition we will have to make in the future.

2. We want to be able to brush Gabriel's teeth with out all of the drama. Gabriel is allowing the therapists to brush his teeth with an actual tooth brush 15 seconds on the top and 15 seconds on the bottom. He is clearly uncomfortable with them putting the toothbrush in his mouth and even more uncomfortable when they begin to brush but he is allowing them to do it. His anxiety is becoming less and less each time they brush. We will have tooth brushing down before his practice teeth start falling out!

1. We want Gabriel to eat. Gabriel is eating! He is eating everything pureed that therapy is putting in front of him and everything I am putting in front of him. Next week we will be transitioning textures during therapy and possibly at home. We would like to work him off the pediasure. The more food Gabriel is able to intake the sooner he will be off pediasure. Therapy still believes we will be off pediasure before we are done.

I am learning so much with feeding therapy. The methods they are using at therapy work very well with Gabriel. He is responding better than he has for any of his other feeding therapists. I am worried. These methods are not being used by therapists outside the feeding program. We know Gabriel is going to require continued therapy when he is done with the program. He will still have to strengthen his jaw muscles until he is strong enough to chew before he can start eating solid foods. I do not want to go to a therapist who does not understand the program and puts our efforts on hold or even backward. I do know that we will be

checking in with the program on a regular basis once we are released. I believe other programs would really benefit from seeing how things are run at the intensive feeding program. Every single child is improving. Some have more challenges than others but every single child is improving.

I will try to get Gabe to record an at home feeding so that others can see what we are doing at home. I am so happy to see that what Gabriel is learning in therapy we have been able to translate at home! It is amazing!

Isabella, did not want to be left out on the open cup skills so she decided to show how amazing she is. My smart little girl decided to drink water out of a water bottle. She drank the water with less spillage than her mother does. Oh wait, she did not spill any water. What a super star!

Sorry for the bad picture, I ran though my batteries while taking pictures of the kids playing outside today so I had to use my cell phone to take pics in a dark house.
IF YOU HAVE ANY QUESTIONS about the intensive feeding program, what we are doing, why we are doing something please leave a comment. I will do a post answering questions if there are any. :)

Snow time is fun time!

2012-01-14T13:50:00.001-05:00

Bro-Ther, what are you doing?

Getting the full experience of our first real snow fall for the year.

You are about to get an experience of an 'Isabella pushing you over' if you don't stop acting silly.

Go for it, the snow is FUN to fall in!

Ya, this snow thing is pretty cool!

I LOVE SNOW!

I love snow, too!

oooo, Daddy just threw a snowball at Mommy!

Bro-Ther, you know what to do!

I think next time I need more snow on my hands to hit Daddy in the face with.

OOOOO sleds!

Oh buddy, Sis, check this out!!!

GO DADDY GO!!!

WWWWHHHHHHEEEEEEEEE!

I can go faster. GO MOMMY GO!!!

WWWWWWWHHHHHHHHHEEEEEE!

My turn Bro-Ther, hold on!

UG, you are heavy!

1, 2...

3!!!!!

Intensive feeding day 18

2012-01-14T00:46:00.000-05:00

Friday
8:45am-9:30am - Meal 1
My pediasure was reduced in thickness. I tolerated it so well that mom is using the new thickness in my squeeze bottle this weekend!

11:45am-12:30pm - Meal 2
I am doing so well with my feedings that I will get to start training with an open cup on Monday and I will start some textured foods on Monday as well.

12:00pm-2:00pm - Nap time
ZZZZZZZzzzzzzzz

Go ahead and make my day!

ZZZZZZzzzzzz

Wow, I had the craziest dream ever!

2:45pm-3:30pm - Meal 3
Therapy thought they things I am doing now would be the things we would be finishing the session with. We are not even half way in (20 days). I love showing off!

I am an all or nothing kind of kid. They expected nothing so I will show them all.

3:45pm - head home
Mrs. Beth and Kai came over to visit tonight.

Yup, and they brought presents!

It was nice to see Kai wasn't it Sis?

Ya, he is super cute!

And fun to play with!!!

Gabriel, I like our Christmas presents but do they have to zip so we can't unhook them?

I agree Sis, what was Mrs. Beth thinking?

I mean, it is not like we are always taking our diapers off and running around naked.

But we do that Sis.

You aren't suppose to admit to that Gabriel.

Oh, my bad, I mean we dont take out diaper off and run around naked...

Much better Gabriel...

Now get over here and help me learn out to get out of these!

Intensive feeding day 17

2012-01-12T22:54:00.000-05:00

Thursday
8:30am - weigh in and measure
I weighed the same as I did Thursday last week. This is HUGE, I always lose weight less after I get sick.

8:45am-9:30am - Meal 1
Ah back to therapy...

They sure don't waste any time around here!

11:45am-12:30pm - Meal 2
Mom did too good of a job feeding me while I was sick. Therapy started right were they left off. They moved forward at each of my feedings.

Ms. Jess and Ms. Emily reduced the thickness of my drink a little bit and I tried new foods at every feeding.

12:00pm-2:00pm - Nap time
Nap time, I don't need no nap time!

Okay, I am tired but I am not going to take a nap!

2:45pm-3:30pm - Meal 3
Haha, I got my way, no nap! I am the winner!

3:45pm - head home
What did you do today Sis?

I played with my friends at School.

Did you hear that I did very good taking my bites and drinks today.

Ya, so what I eat my food and drink my drinks every day!

I'm just special sis!

Oh you are special alright, watch were you point that thing!

Speaking of special who tried to ride the dog this evening?

Hey, Baby wanted to go for a ride!

You know you love me Sis!

I love you but not that smell Bro-Ther!\

Mom's note - We got the okay to feed Gabriel pureed foods off his okayed food list. To get on the ok food list Gabriel has to take the food in two consecutive meal settings without resistance. So far Gabriel has yet to refuse any foods. So he is allowed to eat pureed beef stew, chicken and masked potatoes, french toast and sausage, sausage and biscuits, fruit cocktail, pears, carrots, peaches, green beans, sweet potatoes, yogurt, pudding, mac and cheese and grits! That is a pretty good list considering 17 treatment days ago he would only eat pudding and yogurt and that was spotty! We have some big plans for next week. We will not know how far Gabriel can go until we get there but the hope is to get Gabriel drinking nectar thick liquids from an open cup and eating gritty pureed foods. WOW, That is HUGE! I was so afraid we would lose ground while he was out sick. I am amazed and proud of my little man! Way to go Gabriel!
Puree tip of the day - Typical blenders can be adapted to make purees very easy. You can place a ball jar on the blade. Make sure the spacer is in place correctly put the blade in and puree away. Pictures of Green beans freshly pureed to prove it...

Spider song kind of night!

2012-01-12T22:25:00.000-05:00

The itsy bitsy spider

Climbed up the waterspout

Down came the rain

And washed the spider out.

Out came the sun

And dried up all the rain

So the itsy-bitsy spider

Climbed up the spout again!

Still out of Feeding Therapy

2012-01-11T21:41:00.000-05:00

Can you believe Mom wouldn't let me go to feeding therapy again. So what I have slept excessive hours, Sis, why can't I go!

Brother, we are still snotting and coughing all over the place.

Ya but still, I think we should be able to see our friends!

I hope we get out of quarantine tomorrow, I have plans Bro-Ther.

You do not, quite faking like you are important Sis!

I AM IMPORTANT, Bro-Ther!

You know what sis...

We are important!

YES WE ARE!

Thanks to Biggby posting our blog post about them on their facebook page we have had hundreds of people visiting our blog sis!

Can you believe mom dressed me like this and posted pictures on the blog. Look, I know I like to take my diaper off but is that any reason to dress me like a complete dork?

HAHAHA, I think I wet myself!

The Wheels on the Purdy Bus

2012-01-11T21:22:00.000-05:00

THE WHEELS ON THE PURDY BUS

The wheels on the bus go round and round

Round and round, round and round

The wheels on the bus go round and round

All through the town.

The wipers on the bus go "Swish, swish, swish,

Swish, swish, swish, swish, swish, swish"

The wipers on the bus go "Swish, swish, swish"

All through the town.

The door on the bus goes open and shut

Open and shut, open and shut

The door on the bus goes open and shut

All through the town.

The horn on the bus goes "Beep, beep, beep

Beep, beep, beep, beep, beep, beep"

The horn on the bus goes "Beep, beep, beep"

All through the town.

The baby on the bus says, "Wah, wah, wah!

Wah, wah, wah, wah, wah, wah!"

The baby on the bus says, "Wah, wah, wah!"

All through the town.

The people on the bus say, "Shh, shh, shh,

Shh, shh, shh, shh, shh, shh"

The people on the bus say, "Shh, shh, shh"

All through the town.

'it wasn't me' is back

2012-01-10T21:33:00.001-05:00

Gabriel slept FOREVER during nap time today!

He slept for a whole six hours.

Mommy says it is going to be a long night.

Bro-Ther, you are finally awake!

Well, I am out of bed anyway.

Bro-Ther, let's play!

Okay sis, what do you want to play?

One

Two

Three

I see you Sis.

That was sure fun.

Mom and Dad are coming, act like we aren't doing anything!

What? It wasn't me.

Mom's notes - Gabriel was unable to go to feeding therapy again today due to still being ill and having a temperature last night. Hopefully we can go tomorrow!

Thank you Biggby!

2012-01-09T22:16:00.000-05:00

Growing up in Lansing I have always been a huge fan of Biggby coffee (way back before the name change). When Biggby came out with their Devos Children's hospital mugs, I smiled in appreciation! They came out not long after Gabriel was home from one of his hospital stays.

I ran out and bought everyone in my family a mug.

All of the parents who have children in the Devos Children's Hospital's Intensive Feeding Program have found small addiction in Biggby coffee to help pass the sometimes seemingly endless hours. I decided that I wanted to get the parents each a Devos Children's mug to help them remember their time in the feeding program. Unable to find enough mugs at any one Biggby location I emailed their corporate office to see if I could buy the mugs though there.

Within a couple days I got an email stating that they don't have any of the Devos mugs stored at corporate, what is out on the shelves is all that they have. (Dang, it was worth the thought.) However they would like to donate some mugs to the families in the program and the Ronald McDonald house.

A few days after that (today) UPS came knocking on our door.
In the words of Gabriel and Isabella:
Bro-Ther, check these AWESOME travel mugs out. Do you know what a travel mug is for?

It is to drink from sis (Gabriel signing drink)!

Wow brother you may not drink from a mug but you do know what it is for.

Of course I do sis!

Gabriel you are getting a little too close to my mug!

I am just sitting over here drinking and minding my own business!

Gabriel everyone knows that is a lie, you don't drink out of mugs! In fact up until a week ago you only drank out of a bottle.

I need these mugs Lala!

What do you need them for Gabriel?

I need to give them to all of my friends at therapy's parents because Biggby is amazing and sent the mugs for them!

Wow, That was super amazing of them! I know your friends parents will LOVE these mugs!

Biggby sent enough mugs for each parent to have one and the extras to take to the Ronald McDonald house for families there.

Click here to go to Biggby's website and here to go to their facebook page. If you live near a Biggby please stop in and get a coffee. What an amazing company! They had me at the Devos Children's Hospital mugs and this is just whip on the coffee!

Sick again... goodness!

2012-01-09T21:36:00.000-05:00

Mom wouldn't let me go to therapy today!

I know, she wouldn't let me go to school either, so we showed her by kleenexing the living room.

Ya, but then she showed us back by making us go to the doctor, Lala.

I know Bro-Ther, she is always besting us.

What is up with that,Lala?

I don't know Bro-Ther but I really don't feel good!

Well the doctor man said you are still pretty sick. Only one of your ears is infected right now. You have a sinus infection and your lungs are still icky. From what I overheard, you are going to be going to the ear doctor with me. I bet they put those weird things in your ears too.

If it helps me with these sore ears I will be very happy! You aren't doing so well yourself. You have a sinus infection and had to get put on stronger antibiotic because he thinks it is getting down to your lungs.

At least I am still eating like a champ!

I know you are. I can hear it each time you eat. Why can't I get to eat with mom cheering me on?

Because you are always eating, mom would have to quit her job!

potato head

2012-01-08T21:42:00.000-05:00

This is 'BABY' Gabriel. I love my Baby!

I will love your baby too Sis.

GABRIEL GIVE BABY BACK RIGHT NOW!

What Lala, I can't hear you.

Gabriel why are you so mean to me?

I am sure it has nothing to do with your bossing me around all the time.

I only boss you around when you need to be told what to do.

So... I never need to be bossed around then!

So you say Gabriel!

Hey sis, Why wont mom let me play with all of my Christmas presents? Look, this one is still in it's package.

Why do you need a potato head when YOU are a potato head!

Boy I crack myself up!

Beep beep beep

2012-01-07T22:04:00.000-05:00

LALALALALA

What do you want Bro-Ther?

HHHHHHIIIIIII LALALALALA

You are crazy kid, has anybody ever told you that?

Lala, I crack myself up!!!

Oh Bro-Ther.

What Lala?

How has your eating gone today Bro-ther?

I am the bestest eater ever.

Um, Gabriel, we all know that is a lie!

I ate my bites and drank my drink then played with my toys very good today...

Oh good! Before long we can demand food every five seconds together!

And then the timer went BEEP BEEP BEEP and I was all done!

I have to hear you getting to eat your food and play with the toys each meal. I look forward to the beep too because it means I get attention again!

You are more than welcome to eat for me!

OH BOY REALLY?

I don't know, you will have to ask mom!

Intensive feeding day 16

2012-01-06T21:49:00.000-05:00

Friday
8:45am-9:30am - Meal 1
Mom started the day off by feeding me my bites (food) and drink, doing my verbal rewards and my toys. She did everything while Ms. Jess watched to make sure mommy did a good job.

I give her a A- ;)

11:45am-12:30pm - Meal 2
The second meal it was just Mommy and me in the room.

Mom must be hearing voices in her head because she would talk to someone in the middle of my eating.

I give her an A on this feeding.

12:00pm-2:00pm - Nap time
No thank you! I tried very hard to get out of nap time by giving mommy a HUGE hug and saying "eye lala ooo". Mommy cried but she did not let me get out of my nap.
2:45pm-3:30pm - Meal 3
It was just mommy and me again.

When Ms. Jess came in after the feeding she said it looks like mom has been doing this for years.

As if I would allow that to happen!

3:45pm - head home
Home, home, take me home!

First you have to find me!

Where am I?

Bro-Ther, how was feeding therapy today?

It was good, mom did pretty good, too.

What did you get to eat?

Who knows, when it is pureed it all looks the same.

But it tastes different.

Everything tastes different from pediasure, Sis!

Boy kid, you are missing a whole world with not eating!

Mom's note - I got to feed Gabriel his whole meal at 6 and 8 pm. He ate yogurt and pudding as his meal and his thickened pediasure out of the squirt bottle for his drink. Gabriel did a very good job. He did throw up just under half of his last meal shortly after finishing the meal. I know that Gabriel's therapist will call tomorrow to check and see how he is doing. Gabriel is not use to eating a whole big meal that late at night. He typically only drinks his pediasure and does not eat. He handled throwing up very well! And we managed to not get any on anything other than his empty plate on the table. The picture below was taken not even 60 seconds before Gabriel threw up, as you can see he ate everything before he got sick.

Intensive feeding day 15 - OMG no bottle!

2012-01-05T22:46:00.000-05:00

Thursday
8:30am - weigh in and measure
Almost 29lbs this morning without a sweatshirt on. Yes, I know I am AMAZING!

8:45am-9:30am - Meal 1
What the heck is daddy doing in here?

He is going to learn just like mom has been learning?

Well, at least he can blow better bubbles than mom!

But you all MUST remember...

I am the BEST bubble blower ever!

Are you really going to make me allow you to hold the toothbrush to my lips for a full three seconds?

Are we done yet?

Look, I am on to you, stop trying to use that to brush my teeth!

BREAK (after a short rest)

You are the best Daddy monster ever!

If only I could reach...

Thank you daddy!

11:45am-12:30pm - Meal 2
I do my stretches.

I am working on my chew, chew, chewing.

I eat almost every bite thrown at me, I tried several new pureed foods today!

12:00pm-2:00pm - Nap time
No thank you!

2:45pm-3:30pm - Meal 3
Daddy gave me my drinks like a rock star today!

3:45pm - head home
ISABELLA, Do you know my girlfriend is coming over to visit?

No, why would anyone want to visit you, Bro-Ther?

I want to visit him because he is so handsome, Bells!

Well Lily and Gabriel, at least Tyce came over to visit me.

(He is a cutie!)

Hey you two, what are you doing over there?

Nothing sis, mind your own business!

Can you believe Isabella is always in my business, Tyce?

Look man, I am staying out of your business with your sister!

That girl is CRAZY!

HEHEHE

Gabriel, you should be nicer to your Sister!

What if I am not, Lily?

I will pull some Jujitsu moves out on you Gabriel!

Dang I can't win!

Boy, I love Lily more and more every day Gabriel!

Mom's note - So I learned that I would be doing at home bottle feeds starting tonight and video taping them so that we can review them tomorrow to make sure that everything is in place for the weekend. I have to admit I was super nervous because Gabriel has not changed his behavior at home though this process. We were told not to implement any of the things they are doing at therapy until we were told to do so (and trained exactly how to) I was hoping it would go better once we were able to implement things that are being done at therapy. Needless to say things were more hectic than they typically are because Gabriel and Isabella had friends over. Gabriel managed to stay focused and ROCK OUT during his feedings. I am SO proud of him!!!! I did not have any issues with his feedings! (drinks)

NO MORE BOTTLE AT THE PURDY HOUSE!!!!

Intensive feeding day 14

2012-01-04T21:39:00.000-05:00

Wednesday
8:45am-9:30am - Meal 1
If you can't see me, do I still have to eat?

Mom sat in on my feeding today. She praised me when I took my bites and drinks this meal.
9:45pm-10:15pm - "food works" learning how to prepare food for Gabriel
Mom learned how my squeeze bottle works so she can start giving me my drinks with my praise next meal.
11:15pm-11:45pm - Parent meeting with psychologist
This meeting was about how awesome I am! Yup, I know, I am amazing! If I keep eating the way I am eating, I will be able to start texture upgrades soon!!!
11:45am-12:30pm - Meal 2
Oh no you are not going to let mom near me with that bottle!

Look, it was to be just between us, Ms. Jess, mom was not to know that I can eat!

12:00pm-2:00pm - Nap time
Look, I ate for you mom.

I just dont see why you have to punish me more by making me take a nap.

Okay, I'm asleep, are you happy now Mom?

Is she gone? Ah, comfy!

Where did she put my gloves? Oh well, a sock will do.

2:45pm-3:30pm - Meal 3
I ate different pureed foods with each meal today. Mom ended up in charge of everything besides my pureed food during my last meal. I hope she doesn't think this will change thing at home. I do not want to give up my bottle! Now, lets get out of here!

3:45pm - head home
Bro-Ther, come here!

What LaLa?

Did you know that Mimi's mommy, our Great Grandma was always called LaLa by her family?

Really sis?

Yup Bro-Ther.

That's pretty cool LaLa, I love learning new things!

Me too, so how was your day at feeding therapy?

One thing is forsure, I am not going to give up my bottle without a fight!

love (day 13)

2012-01-03T22:42:00.001-05:00

Tuesday
I got to go to work with mommy this morning so that Grandma could pick me up and take me to therapy for the day.

8:45am-9:30am - Meal 1
I had my weigh in this morning. I weighed a whole 29lbs with my sweatshirt on! (I was 26lbs when I started)

I ate pureed sweet potatoes, yogurt, pureed pears, Thickened pediasure and pureed french toast and sausage for breakfast.

I am eating 4oz of food and 4-5 oz of Pediasure each feeding now.

11:00pm-11:30pm - Meeting with social worker
Mom did not have her meeting today but grandma and I got to have fun other ways!

This painting with water think is kind of fun. I will have to show Sis how to do this!

11:45am-12:30pm - Meal 2
I got cranky with Ms. Jess when she tried to brush my teeth. I am so over it today!

I ate pureed beef stew, yogurt, pureed fruit coctail, pureed french toast and sausage and thickened pediasure.

I was much better after my brushing was done.

12:00pm-2:00pm - Nap time
Grandma and I both got a nap in!
2:45pm-3:30pm - Meal 3
Don't worry I rocked meal 3! I ate my pudding, pureed pears and yogurt down without a problem.

3:45pm - head home
Why didn't I get to see Grandma?

Isabella, Grandma did not visit you because you are crazy!

Doggy and I are NOT crazy!

Then she did not come see you because I am the best!

Tell doggy you are sorry for insulting him, Bro-Ther!

Grandma did not come see you because she had to go home.

Ya, it's sad!

Isabella, at least you got to go to school today. I like my new friends but miss my classmates at school and at daycare!

YA, I had a fun day!

See Sis, we both made the best out of our days!

SSSHHH, don't tell but sometimes Bro-Ther you are so smart!

Guess who I met Isabella...

Who?

The speech pathologist at mom's school. She has a brother with Down syndrome. They are 18 months apart in age too. She loves her brother and helps him, she is his guardian.

Are you getting ideas Gabriel?!? I love you, we will see what the future holds for the rest. Some days I would like to kick your pants off... but mom would just tape them back on.

Just kidding Bro-Ther, I am always here for you!

Thank you grandma for my therapy pictures!

DOG

2012-01-02T20:33:00.001-05:00

Bro-ther!

What Sis?

Have you seen my dog?

Nope haven't seen it, I've been busy playing with my lion.

Huh, I just had it a second ago.

Roar!

Gabriel are you sure you haven't seen him?

MOM'S COMING!!!

Here put this on quickly, maybe she won't notice Bro-Ther!

Bro-Ther, if you aren't going to put your clothes on I will. I don't want to get into trouble!

GABRIEL, she taped us in!!!

What sis?

I am mad at you, you got us into trouble for taking our clothes and diapers off again!

Would you still be mad at me if Dog showed back up?

DDDDDOOOOOGGGGGGGGGGGGGYYYYYYYYYYYYYYY

Now it is time to cheer Michigan State on!

new study in the works

2012-01-02T12:10:00.001-05:00

With medical advances there are many medical unknowns. The University of Michigan is currently conducting a study to find out if early therapy for children with feeding tubes will help them avoid the feeding issues that are popping up all over the country. I do not know the exact number but most children who have feeding tubes during the first year and a half of life end up with a variety of feeding issues. It is known that in the first year and a half of life we learn all of the skills needed in order to eat correctly. Feeding tubes are placed out of medical necessity to get a child the nutrient they need in order to survive. Often there are other medical issues that take priority over teaching how to swallow correctly, do the basic chewing motion or strengthen the muscles needed to eat.

Out of the six families currently enrolled in the Intensive feeding program with Gabriel, only one child did not have a feeding tube for their first year and a half of life. The basics are the same for each child. They had feeding tubes because they had larger issues going on and needed basic nutrients in order to survive. We all know that early intervention is extremely important, however I do not believe Gabriel would be without feeding issues. I do believe he may have had fewer issues if he had some basic therapy from day one. I do not blame doctors for using the feeding tube to get Gabriel his basic nutrients. Gabriel needed to gain weight to have his open heart surgery and was not able to do that on his own. I would have like to have had some tools in my toolbox to assist Gabriel in strengthening his muscles so that he would be able to eat sooner.

Intensive Feeding Therapy will not fix all of Gabriel’s issues. Gabriel has had three years to gain distaste and distrust in food. He has missed the critical period of time where those skills are to be learned. It is going to take a very long time to learn what was to be learned in that short period of time. All of the older kids in the intensive feeding therapy program have been through two or three other 8 week intensive feeding programs. It is a slow process that will require time. We will gain as much as we can from this program. From the sound of it Gabriel will be able to eat pureed foods for his regular meals, drink out of a open cup, use instant breakfast once a day for nutrition (instead of pedisure all of the time), and allow us to brush his teeth. We will have to go through texture upgrades at a later date (maybe though another intensive feeding therapy program). These improvements may seem small to many of those reading this but they are HUGE for Gabriel.

I hope the University of Michigan finds that feeding therapy needs to be administered to these lovely children who have to have feeding tubes to survive. I would love to see a feeding therapist coming around just like you see the physical therapist and occupational therapist all of the time when your child is in the NICU. Early intervention is SO important! I would love to see feeding therapists able to come to houses and help little ones who are too sick to be out in public. Our Early On program does not even employ a feeding therapist. Families have to seek outside sources for this. This means, more appointments outside the house for children who are medically fragile.

Thank you University of Michigan for bringing this to other’s attention!

Happy New Year

2012-01-01T21:28:00.000-05:00

So today is the first day of the new year?

Yes, Sis.

So, when the calendar is on February it is my birthday again?

Yes, Sis.

So, I get birthday presents once a year?

Yes, Sis.

So, My birthday is coming up?

Yes, Sis.

So, you will be giving me more presents?

Yes, Sis.

So, my birthday is coming up and I will be getting more presents very soon?

Yes, Sis.

Wow, that's fun!

Um Sis, what was the whole point of that conversation?

I found that I like opening presents at Christmas and wanted to know when I get to open more.

I like opening presents too but you are weird Sis!

You are weird too Bro-Ther!

2011 year in review

2011-12-31T22:02:00.001-05:00

January

February

Happy 1^st birthday Isabella

First magazine appearance!

March

April

May

June

Isabella’s first horse ride

Gabriel’s first horse ride

Gabriel gets Cankle support

July

August

Happy 3^rd Birthday Gabriel

Trip to Illinois with Grandma and Great-Grandma

September

Gabriel’s first day of school

First trip to Michigan Adventure

October

Step Up for Down Syndrome walk (4^th annual)

First official school (daycare) photo’s

November

Isabella’s first ER visit (104 temperature, ear infections, just sick)

December

Ear tubes, adenoid scrape, sinus cleanse and sinus cultures – Gabriel

Intensive feeding therapy starts - Gabriel

HAPPY NEW YEAR EVERYONE – LOVE GABRIEL AND ISABELLA

Wow, what a year. We have been very busy here at the Purdy house! This year’s resolution is to have one full year without any surgeries. We almost made it one full year but were days short. Click here to see if I was able to keep last year’s resolution! I can't wait to see what our adventures will be in 2012.~Erin

Rocking out on Day 12!

2011-12-30T22:42:00.000-05:00

Friday
I got a new chair today at therapy. They keep trying to make me keep my feet down during feeding. Mrs. Kate said that I am going to be the first student to use my feet to block food if they don't figure something out quickly!

8:45am-9:30am - Meal 1

Today I was introduced to many new foods. I had sausage and french toast puree! I have never tried anything like this before. I actually liked it! Don't tell mom and dad, they dont know what I am doing in therapy, they sit in the great room while I am back working hard!

I also had my teeth brushed for 10 whole seconds on top and 10 whole seconds on bottom this feeding.

In addition to my sausage and french toast puree, I also ate: Yogurt, pear puree and fruit cocktail puree.

OOO and a wash cloth.

Ms. Jess is no fun sometimes, she told me I couldn't eat wash cloth...

She gave me my drink instead

and made me drink that, dang!

Between our first and second feedings we all tend to get a bit antsy!

We are up to six amazingly strong kids and their fun parents in a very small space

We learned the way to the "track" where we can have some space to move!

There is even a piano up there!

I love playing the piano, it sure helps pass the time!

11:45am-12:30pm - Meal 2
Here we go again... I had to let Ms. Jess brush my teeth for a full 15 seconds on top and 15 seconds on bottom this feeding.

I ate more sausage and french toast puree, pear puree and fruit cocktail puree. I also got pudding this meal with my drink.

12:00pm-2:00pm - Nap time
I am eating so good. I think I should be able to skip my nap!

Maybe I can do yoga instead!

Dang mom wins again...

She is good at making me sleep, I don't know how she does it. I try very hard to stay awake.

2:45pm-3:30pm - Meal 3
So... I got some news today. My bottle days at home are numbered. I am not sure if that is a good idea, I love my bottle!

Mom and dad will be trained by next friday in how to use the bottle to give me drinks and then my beloved bottles are gone...

Oh ya, I did very well this feeding too. I worked on how to chew in my stretches.

3:45pm - head home
So Gabriel, I hear you are losing your bottle by next weekend?

Mom and dad are sadly mistaking if they think it will be easy on them! I am not losing my bottle without a fight, Sis.

We will see Bro-Ther, Mom and Dad tend to win!

*Mom's note - You read correctly, we are working very hard to have Gabriel completely off the bottle by next weekend. He is responding to therapy very well right now! I am so excited to learn how to get him to drink without using the bottle! We have several things going on right now. I will try hard to break them down so that it is easier to understand. We have had such a week of great leaps I bet it is hard to keep up.
If you will think back to day one and our three main goals for this program.

3. We want Gabriel to be off the bottle. Gabriel is currently completely off the bottle at therapy and will be off it by next weekend at home. He will be using a 'squirt bottle' where we have to squirt the liquid into his mouth for each drink. The liquid he is currently drinking is honey thick pediasure. (basically pediasure thickened to the consistency of yogurt) Once Gabriel is drinking from the squirt bottle at all times therapy will reduce the thickness of his drink as well as add different drinks into his diet. Once they are sure he is safe (not aspirating) we will be taught how to do this at home. The goal is to get Gabriel to drink his drinks from an open cup before he graduates therapy.

2. We want to be able to brush Gabriel's teeth. Keep your eyes on this kid! He is allowing his therapists to use the finger brush. We will eventually get Gabriel to tolerate two minutes (not sure if that is total or not) of brushing with a real toothbrush by graduation. We are on our way. Can't wait to see the continued progress!

1. We want Gabriel to eat. We would like to work him off pediasure. Gabriel is trying everything therapy is throwing his way. I can't wait to see what the future brings with his eating! The more calories he takes in from his food the more likely we are to get him off pediasure.

The whole team is very excited with Gabriel's progress, he still has his moments but who doesn't. The interventions they are putting in place are working for him! We are only three weeks in and we are seeing major progress. We will have bumps in the road but we will continue to walk just like everyone else, one step at a time!
KEEP UP THE GOOD WORK MONKEY!!!

brushing teeth (day 11)

2011-12-29T20:49:00.002-05:00

Thursday
8:30am - weigh in and measure
I am hanging out at about the same weight.
8:45am-9:30am - Meal 1
I opened my mouth

Closed my mouth

AND a new yogurt!

Oh and today was the last day I will ever have a bottle at Therapy... Soon no bottle at home... :( bye bye bottle, I will miss you :(

11:45am-12:30pm - Meal 2
I opened...

I drank and closed...

I ate pureed pears like a champ...

I surprised everyone with my improvements again.

Yup, I know, I rock!

12:00pm-2:00pm - Nap time
Really? Why do I have to take a nap? I do just fine without a nap!
2:45pm-3:30pm - Meal 3
This is the tooth brush they think they are going to stuff in my mouth.

I don't think it is a very good idea to put things in my mouth!

It is not my favorite but it does feel weird.

You have one more second Ms. Jess!

Okay I am over it!!!

I lasted a bit before I refused to allow any more things to be put in my mouth.

3:45pm - head home
While I was working hard on eating, what was Isabella doing?

She got to play all day with Kitten.

and she even likes dogs better.

sick Sis (day 10)

2011-12-28T22:52:00.001-05:00

Wednesday
8:45am-9:30am - Meal 1
Ms. Jess and I rocked it during my first feeding.

I opened my mouth, closed my mouth, ate pudding and ate yogurt like a pro!

9:45pm-10:15pm - "food works" learning how to prepare food for Gabriel
Mom learned how to puree mac and cheese and not have it grainy. Not sure how this is helpful to me, it is not yogurt or pudding.
11:15pm-11:45pm - Parent meeting with psychologist
Mom helped make plans... see what they were in my second feeding.
11:45am-12:30pm - Meal 2
REALLY MOM?

Yup, they did it.

They put nectar thickened pediasure in the squeeze bottle and put it in my cheek pocket.

I showed them all up though...

I swalled it all down like a champ and continued to do so though my whole feeding!

12:00pm-2:00pm - Nap time
I did NOT feel like napping today. Mom made me.
2:45pm-3:30pm - Meal 3
Ms. Jess gave me more and more pediasure in my mouth at once.

I swallowed it down each time without a problem.

Everyone is extremely excited with my progress. I am not sure why. I am just doing what I am told to.
3:45pm - head home
When we picked up Sis from the bestest daycare ever, she was not herself.

She cried and screamed the WHOLE way home.

My ears hurt from all of her screaming!

Mom's must have hurt too because she dropped me off with dad and took Isabella somewhere else.

Ya, she took me to the doctor Bro-Ther.

The doctor took one look at me and looked worried.

She gave me a pretty cool new toy though!

OOoo, that's cool Sis!

Yup, the doctor said i have a double ear infection, sinus infection, strep throat, and pneumonia.

Ya, that sucks sis, so about this breathing thing...

It's pretty cool hun... and I get to use it every four hours.

Um, is it my turn yet sis?

Nope, for once it is my turn for attention!

Bro-Ther (day 9)

2011-12-27T21:46:00.002-05:00

Tuesday
8:45am-9:30am - Meal 1
I had an ENT appointment this morning and missed my first feeding.

He is not sure why I am having so many problems with my sinus's but this round of Antibiotic has kicked in and I am starting to feel better.

I learned that My hearing has gone from 'having a difficult time hearing' to 'above average'...The problem with this is that they told Mom... Now she knows... GRR!!!

11:00pm-11:30pm - Meeting with social worker
Mom met with the social worker today to make sure everything in order with work next week. Mom is pretty worried that she has not heard from her work as far as the FLMA paperwork that they have had for weeks.

While she was out I talked many of the adults into putting my medicine on my cheeks.

I love how it feels!

11:45am-12:30pm - Meal 2
I rocked my first meal of the day. I allowed Mrs. Kate to do a new stretch!

She puts her fingers in my mouth and massaged my cheeks.

I opened...

and closed like I was told over 80% of the time.

12:00pm-2:00pm - Nap time
Nap, what nap, I don't remember a nap...

2:45pm-3:30pm - Meal 3
I rocked more than I did last feeding session surprising Mrs. Kate and Mommy!

3:45pm - head home
Hurry up mom!

I want to play and get into trouble with Sis!

BRO-THER!!!

I missed you today Bro-Ther!

I didn't miss you sis!

Bro-Ther that is not nice.

And not true, I love you.\, LALA.

I love you too Bro-Ther!

You are my bestest Bro-Ther!

And my only Bro-Ther!

Faces

2011-12-27T01:01:00.000-05:00

Isabella, check out my 'I didn't do it' face!

This is my 'look at my smile and not what I am doing' face.

This is my 'I just told a joke to make sure you aren't seeing the naughty things I am doing' face.

This is my 'O' face.

This is my 'why no, i am not trying to take my clothing off, it is taking itself off' face.

This is my 'I'm still dressed are you happy face'.

This is my 'Still dressed but I got my diaper out from under my onesie' face.

This is my 'nope, I haven't seen the remote' face.

Wow, Gabriel those are pretty good. Look at a few of my faces... 'Innocent' face

'Just my size' face

'Mom, lets go shoe shopping' face

Those were fun sis!

Yup, I know.

What face is this sis?

The 'you are going to get off me before I punch your face in' face

No, it was the 'I love Isabella' face.

Merry Christmas

2011-12-25T20:49:00.000-05:00

What a day Isabella!

It was a lot of fun Gabriel!

Santa came back to get us out of bed.

Not my most favorite part of the day Gabriel!

Oh suck it up Isabella! Santa was super awesome!

Lets agree to disagree on that Gabriel!

And then we got to open our presents with Mom and Dad.

It was so much fun!

I got Mr. Potato head Toy Story!!!

What I cant hear you!

Let me see Sis!

They are pretty cool huh? Do I look ready to go to the range?

Hold still, let me draw you!

My turn Gabriel!

We went to Mimi and Papa's this afternoon!

Mimi and Papa were as good to us as Grandma and Grandpa!

Mommy got an Ipad from Mimi, Papa and Daddy... it will be all mine just wait Isabella!

Who cares Gabriel!

I do, I love electronics and an Ipad is going to be amazing!

Gabriel, did you see what daddy got at Mimi and Papa's?

This Isabella?

Yup that.

It's my size!

I like the picture of you with Daddy and Papa!

This one?

Something like that Gabriel.

I love all of my presents!

I love all my presents and yours!

We are truly blessed! Merry Christmas everyone!

Santa is coming!

2011-12-24T22:53:00.000-05:00

I've got all my babies snuggled in!

I'm snuggled in!

Wonder what Santa brought!

Christmas Eve

2011-12-24T21:37:00.000-05:00

LALALA...

What Bro-Ther?

Mom left us in these diapers to take pictures...

OOOOO, are you thinking what I am thinking Bro-Ther?

Yup, NAKED!

Hehe, did you think Mom would allow us to post a naked picture?

Nope! She does have a lot of pictures of us with Grandma, Great-Grandma, Aunt Brett, Grandpa and Great-Aunt Billi!

Ya, We sure had a lot of fun today!

We got lots of nice presents!

Ya, I wonder what Santa will bring us!

I bet it is going to be something neat!

I know Mimi and Papa are going to have more fun stuff for us!

We have the best family EVER!

Yup, it's true!

Oh, Isabella I have a secret for you!

I hope it is that you are going to get out of my new baby bed before you break it!

Nope, this is comfy!

Just kidding sis, Chill!

I bet Santa is going to bring your coal for being mean to me!

Nope, that is my secret! I heard from mom AND dad that we made Santa's nice list...

Are you sure, Daddy is acting weird!

Yup, I am sure!

Ah, he is back to normal. Good night Bro-Ther!

Good Night, Sis!

Good Night World!!!

Intensive feeding day 8

2011-12-23T20:58:00.000-05:00

Friday
Daddy came to feeding therapy with me today!!!
8:45am-9:30am - Meal 1

I worked on opening my mouth, taking bites and straw to lips.
I was a little unwilling at first but gives in eventually.
I decided to show of and picked bottle up and put straw in mouth on my own!
11:45am-12:30pm - Meal 2

Same stuff as the first feeding, but I did not put the straw in my own mouth this time.
12:00pm-2:00pm - Nap time
Daddy and I slept so good we did not hear Grandma stop by and drop stuff off.
2:45pm-3:30pm - Meal 3

When I work on opening and closing my mouth we have found a new problem. I like to count with Mrs. Kate. I am able to count to three all by myself and when they want me to open or close my mouth to the count of three I helped them count today.
3:45pm - head home
Long weekend, no therapy Monday!!! :)
I got home from theapy to find Grandma and Aunt Brett here!

Grandma here?

OOOoooo Isabella come here and check this out!

Grandma brought her Nook!

She even loaded new games on it for us Isabella!

Grandma get back here!

Get over here partner.

See Isabella, when you ask grandma nicely she shares!

Isabella, I did too ask nicely.

What calling Grandma partner is not the same as saying please?

How about if I share...

Or cuddle...

See they all work for me Isabella!

See Isabella, Santa is going to bring you coal for being mean...

I still can't believe you showed the world me in your tutu last night, evil... simply evil!

Intensive feeding day 7

2011-12-22T21:05:00.000-05:00

Thursday8:30am - weigh in and measure
I gained back the weight I lost last week. I am going to be a bouncy ball with my weight just like I always have. Just because I am in feeding therapy doesn't mean I have to completely change my ways.
8:45am-9:30am - Meal 1
Mrs. Kate added close to my open mouth commands. Sometimes I get confused about what I am suppose to do so I open my mouth part way to cover all my bases.

Today the common room was extremely busy! It was hard to move with people everywhere and it was super loud.

So I decided to go into my room and call Papa!

11:45am-12:30pm - Meal 2
Time for therapy again?

I'm out of here!

Run like the wind!

You can't see me!

Close your eyes!

12:00pm-2:00pm - Nap time
Boy did I ever need a nap today! It only took me 10 minutes to fall asleep today!
2:45pm-3:30pm - Meal 3
After practicing my open and close with Mrs. Kate this morning and Ms. Kate this afternoon Ms. Kate reintroduced the straw.

I am still not sure about the straw...

But I did use my new 'open and close' skills to allow it in my mouth!

3:45pm - head home
Isabella and I got home today to a package from the North Pole!

Santa sent us some books, he even signed them and all!

Gabriel, I can't wait for Santa to come to our house!

I don't know why you are so excited sis, he is bringing you coal!

He is NOT!

Sis, kitten told him about all the times you pulled her fur!

Gabriel, did she tell him about the things you steal?

I don't know what you are talking about!

Intensive feeding day 6

2011-12-21T21:16:00.000-05:00

Wednesday
8:45am-9:30am - Meal 1
I'm good, I don't really need to open my mouth today. Right?

I mean, I don't want to be rude but I just dont see why you are always telling to open my mouth.

Has my timer gone off yet?

9:45pm-10:15pm - "food works" learning how to prepare food for Gabriel

Mom went to a meeting all about how to prepare my food. We now have to weigh all of my food before I eat and after I am done and record everything.

While mom was learning I was playing in the common area!

11:15pm-11:45pm - Parent meeting with psychologist
Mom then went to a meeting with the psychologist. Mom said they discussed why they do everything they do. Mom said it is basically like what she does at work with Positive Behavior Intervention Support (PBIS) program just packaged a little differently. They discussed at that time that I would no longer be offered food until I started to open my mouth on command.

Sis, are you there?

Yup, I am here.

How is daycare treating you today?

It is awful Gabriel, we had pj day today.

What have you done today Sis?

We played on the slide, read books, made Christmas presents.

Mom, Stop watching me!

It was a very boring day today Bro-Ther.

I'm going to write Santa a letter asking for him to let me skip Intensive feeding therapy and go to daycare instead!

11:45am-12:30pm - Meal 2
When I heard no food I decided to change my ways a little bit, they already have me on restricted Pediasure, I can't lose my food too!

I even allowed Mrs. Kate to do a new stretch that involves her putting her fingers in my mouth and rubbing my gums from molar to molar.

This better earn me a lot of brownie points!

12:00pm-2:00pm - Nap time
Boy it is hard to please those women!

I am so glad they cheer and give me toys when I open my mouth.

Elmo toys work better than Elmo videos!

Ug! I dont want to get up and do it all over again.

Let me sleep for a couple more minutes!

2:45pm-3:30pm - Meal 3
Okay, here we go again, the gave me food because I did so good last time, so I will try again this time.

Yup, you saw that, I opened my mouth with Mrs. Kate barely prompting me!

3:45pm - head home
We were invited to the Devos party due to my being a patient of Devos right now. I got to meet Santa and Mrs. Clause.

I was too tired and still not really feeling well to really have fun.