It's been awhile since I have updated...

And a lot has happened.  Gabe started school.  Kindergarten!  It has been a very big struggle for him.  He is having huge problems transitioning.  He cries, screams, kicks, spits, throws things, etc.  Yesterday was his first day back to school after 5 days off.  He had a great day!!!  His teachers are using picture schedules, social stories, and tons of sensory items to aid him in transitioning.  It seems like they have all their ducks in a row, but it has been a struggle trying to explain Gabe to his regular ed. teachers.  They seem to have this idea of what a kindergartner should be able to do, and my child in many ways can do more then the "normal" kindergarten child, but in a lot of other ways he is extremely behind his peers.

Gabe also continues to refuse most food.  Just within the last two days we got him to eat baby food bananas and baby food applesauce.  Regular applesauce causes him to gag.  Because he has such severe food aversions and fears associated with eating it has become necessary to insert a nasal gastric tube to ensure he is getting enough nutrition.  Gabe's TSS did manage to get him to chew and swallow a piece of Mario candy.  YAY!!!  We have an appointment with the GI doctor soon to discuss the need for a more permanent tube called a mic-key tube. 

On a more fun note...because this blog is getting pretty depressing...Gabe lost his first tooth on his first day of big kid school.  Really I knocked it out!  Gabe was fighting me about brushing his teeth and he moved when I was brushing them.  That very loose tooth didn't stand a chance against the power of the toothbrush! 

Gabe also has been on a gluten free/casein free diet for a week now.  One thing I noticed was Gabe's increased use of words.  His speech also seems clearer.  He isn't working so hard to find the words he needs to communicate!  Bonus.  It's been very easy going GF/CF because Gabe doesn't eat.  I guess that's one advantage to all of this.  Hopefully down the road when he decided food really is yummy we will be 100% prepared for the GF/CF diet. 

On to Mr. Zane!  Wow he is growing like a weed.  And starting to use more words.  Zane's favorite thing in the world is CARS!!!  Just like his brother.  When we get out of the car in a packed parking lot all we hear is cars, cars, cars, and it's so cute.  The way he says cars sounds like he is from Boston, Ma.  I love it. 

Zane is loving daycare most days.  He only goes 2-3 days a week, but enjoys his friends and teachers.  The other day he came home blue!  His teacher had blue day and all the kids played  in blue jello.  I'm sure he had a blast getting all sticky and eating blue jello. 

I can't believe he is going to be 2 soon.  Where does time go?  I tell him all the time to stop growing, but he just doesn't listen!

Zane continues to have speech therapy.  We LOVE his therapist.  She worked with Gabe for almost two years...and is totally worth her weight in gold!  She is till offering great advice for Gabe and I pick her brain every chance I get. 

Please eat little Gabe

My heart is breaking into a million pieces. It has been a month since Gabe started refusing solid foods. He has lost just over six pounds and continues to restrict his diet to mostly yogurt and pediasure. He has eaten a few bites of ice cream here and there, but nothing worthy of counting as calories. Gabriel had an endoscopy done the other day. I was really praying it was a medical issue that could easily be fixed and I would have my little guy back again. It turns out his esophogus is 100% normal. I know I should be happy. And really I am. But fixing the "autism" feeding issue is so much more difficult. Gabe now has to go to a feeding clinic where a therapist will teach him how to eat solid food. I haven't slept in days. All in do is worry about my precious little guy and how hungry and sad he must be. Even Gabe's behavior is different. He screams in my face and cries at the drop of a hat. I want my sweet lite autie back. I pray every night for him. Please eat little Gabe.

Frustration continues.

Gabe is down 5lbs.  Five!  His summer clothes from last year now fit him again.  How much weight is the pediatrician willing to allow him to lose before they decide this is something more serious?  We took Gabe to the ER on Friday because he was crying that his throat hurt and that he couldn't breathe.  That's not behavior.  This is not because he has autism.  This is something more.  My mommy gut is telling me this is not Gabe being fixated on the idea he will choke.  My little guy is experiencing real pain and his pediatrician is sitting my idle allowing this to go on.  I am watching my son starve himself and no one is listening to me.  The ER doctor was the most helpful.

We have Gabe's name on the wait list for the feeding clinic.  It could take a couple months to get in there.  A COUPLE MONTHS.  So what am I suppose to do in the meantime?  Let him starve?  He is so hungry and he just won' eat.  What is probably a physical problem is quickly going to turn itself into a psychological problem.

Frustrated.....completely.  :(

please eat little Gabe....

....day 17....still no food.  Gabe is down 3 pounds.  He still wants nothing to do with eating.  He only wants to drink and eat Spongebob GoGurt.  I have had him at the doctor 3 times in the last 7 days with no solid answers.  We have tried everything.  The doctor is sending him to the feeding clinic.  They will be able to assess if he needs scoped, a swallow study, etc.  I was holding it together really well, but as each day passes I am finding it harder and harder to deal with this.  Gabe is losing ground and I feel like there is nothing I can do to stop it.  What is happening to my baby?

Still refusing to eat.

Gabe is still not eating.  We are on day number 12 of this.  I bought some strawberry Pedisure.  Thank God he likes it.  I figure if I just give him 3 of those a day and carnation instant breakfast he should be getting all that he needs.  Or close to it.  Frustrated.............................

Eat Little Gabe Eat.

Out of sheer frustration I am blogging.  Gabe is on a food strike.  It all started with a tummy ache and maybe a sore throat...as Gabe was unable to truly tell me what hurt.  Since then it has turned into a fear of eating.  He is convinced he will choke if he eats.  Today I took him to the doctor and his throat is fine.  It's not red, it's not infected, rapid strep was negative.  The doctor thinks it could be a virus.  I'm praying it is just a virus and not a huge regression.  He is also stimming a lot.  Tracing the wall with his fingers, flitting his fingers in front of his face, pacing, echoing, etc.  I can truly relate to those who have kiddo's with feeding issues.  I have a new appreciation as to what their daily lives are like.  Gabe has narrowed his food selection down to yogurt and chocolate milk.  If I do manage to get something in him it is a couple bites and panic sets in that he will choke. 

I'm giving it one more week.  Next Monday I plan on talking to his private OT for some guidance as to what steps to take next.  Hopefully I won't have to have that conversation with her.  How long can a kid live on yogurt and carnation instant breakfast? 

Cookie Monster!

Gabe's first baking/decorating masterpiece!  The Cookie Monster.  Gabe had a blast rolling these sugary treats in sprinkles and adding spider sprinkles for eyes.  He had even more fun eating them.

Our family is loving summer.  We are having a great time at the swimming pool and spending some family time at the kitchen table putting together puzzles.  Gabe used to be a puzzle nut when he was younger.  Hopefully we can bring that back for him.  We also broke out the Wii Fit.  Gabe and I are doing a daily jog everyday.  Maybe he will be a cross county runner someday?!
Zane is busy learning how to talk.  He says "ma ma" for mine, mine!  It is so cute.  And of course I have to take his toys from him just so I can hear him say "ma, ma" and then scream!!  He is so loud.  He is doing great for his speech therapist.  He says or approximates mine, daddy, mama, hot, light, no no and he signs bath, more, thank you, candy.  Zane is showing a few signs of autism.  He spins a lot and he is starting to rock back and forth on the couch, but is easily distracted.  Matt and I both agree we are going to take a sit back and just watch approach as to if Zane may or may not be ASD.  In the mean time...loads of reading, tons of floor time, and even more time spent on having FUN!!!