We are just a family of five...three boys, a mom, a dad, a hamster, and dog. Welcome to our crazy world. Our adventures will make you laugh, cry, and pee in your pants...

Saturday, March 20, 2010

A look Back

I'm updating the blog tonight on Joe's computer..
and he's got SO many pictures that I haven't seen in a while.
Like this one...
Isaac is only 1 day old...look at how puffy he was!
(I was thinking...poor weird looking baby...I'll love you anyway)
Then, he had to go in for his first heart cath (on his 1st day of life)...
and this was when he came out...
of course...still puffy.

Then...as each day went on in the NICU...
his puffiness went down (I suppose it was all the lasix)...
and he started showing us his personality.

I'd say that we got his first smile in the hospital...
We started the "pacifier on the stuffed animal" routine....
that he still LOVES with all his heart...
and we celebrated his first Easter at the hospital...

Just feeling a little reminiscent because his THIRD birthday is coming up...and I just can't believe it! From the 20week ultrasound...docs were weary about Isaac's outcome and what his life would be like. We always listened, but had faith that he would make it...and the awesome docs we had in line would perform miracles. And..they did. Isaac hasn't had a heart surgery in TWO years...and that's amazing! His last surgery was on his cleft palate in July of 2009...and as yucky as that recovery was...I suppose he's glad that food doesn't come out of his nose multiple days each day.

Thursday we had his IEP to transition to the school system. When they opened the meeting, they gave a brief history of Isaac. Well..you can imagine how LONG it took to give a BRIEF history of this kid...and while I was listening...I just felt so proud of him....of how much he's had to endure...and still how wonderful his disposition is. (I almost started crying). And then, as I was listening...I started thinking about how HARD these last three years had been. We have ALL really worked 24/7 to keep Isaac happy, healthy, and frankly...alive. I know that we've worked hard...but, when they are reading it out loud and looking at ME with glazed eyes...I felt proud to be Isaac's mom and one of the people that have helped him become the little man that he is. (I wish Joe could have been there to feel the overwhelming sense of accomplishment that I felt).

SO...it begins. The only "shocker" I suppose was when the school psychologist gave his report. Isaac had the Bayley Assessment and Vineland Adaptive Behavior Scales. I have his scores...so, if anyone can tell me how to read them...LET ME KNOW! What they did tell me was that he scored less than 1% in each category...thus, classifying his as Moderately Mentally Retarded. I know why they say that...he IS globally delayed...in all areas. Simple things like, not talking, walking, waving, understanding simple commands...all those are things that we can work hard on accomplishing. He might always be super delayed...or he might not. Who knows?? BUT, he is the cutest little peanut that I EVER have seen! (If I do say so myself).

I was REALLY happy with the IEP and goals that they set for Isaac. We chose to have him "homeschooled" until I find out if he will need another heart surgery this year, or maybe the fall of next year. Here are some of his goals:
  • By Annual review, Isaac will demonstrate function grasp when using crayons/pencils
  • By Annual review, Isaac will scoop materials with spoon/shovel
  • By six month review, Isaac will stand at furniture to interact with play activity
  • By Annual review, Isaac WILL WALK with or without assistive devices!
  • By six month review, Isaac will learn and follow educational routine (like, go to circle time)
  • By six month review, Isaac will engage in back-and -forth play (like rolling a ball)

and they go on. It's kind of weird, when you look at those goals...and realize that he DOES NOT do all these things. (I know that he doesn't do them...but, it's sometimes hard to explain to other people that aren't around him how much he Can't do...like roll a ball to me, or use a spoon, or hold a crayon). and I am SO STINKIN' excited about these set goals...and the thought that he WILL accomplish them!

He'll get home school services...and I will start him back up in community therapies. We are going to be VERY BUSY!

and guess what? He has a runny nose. SO, he didn't have an ear infection last week...but, I bet he does this week.

AND...we took one of his side rails off his crib and pushed it beside my bed. He still woke up last night screaming...but, it sure was easier to just roll over and pat his bum.

and...he's screaming at me. I am NOT allowed to focus my attention to anything other than HIM..so, bye!

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Grandma Judy said...

Isaac is our little miracle baby.
He has taught all of us alot! Keep up the good work.

Eli will be able to help him achieve some of those goals.

jencooper said...

Call me and I will go over the testing results with you. Can you fax them to me? I will go step by step with you.

I am SUPER proud of the little man. I think that he is absolutely amazing. I look at what he has accomplished just since I have been following you.

Guess what?? The Southwest Ding has flights to Vegas for $99 each way. I am going to try to sweet talk my hubby so we can come. I will call you to discuss dates.

We love all of you!!

Kelly said...

It's honestly so interesting to be on the other side in an IFSP/IEP meeting now. As professionals we just go on about the routine of the meeting and sometimes forget it's the little things (or not so little things) that parents think about during the meeting. It's hard to hear all the information... there is just too much.

Isaac has come so far since he was born. Looking through those pictures made me smile. He is so lucky to have you as his Momma. Who else would get out of bed 20+ times a night to pat his bum!?

It will be interesting to look back at this post in a year and see how much he has accomplished! He's on a roll, so let's see what he can do!

Larsens said...

You are an amazing person! You see the silver lining more often then not. You are special and I have known that just by being your neighbor for a short time. Your children are awesome, not to mention beautiful. All your boys melt my heart! I love reading your blog and seeing Issacs accomplishments!

The Portas said...

I am so glad you were able to sit down and go through an IEP for your AMAZING little man! You all have had such a long and fulfilling past three years and I am so proud of the little peanut that he is. We love you, Isaac!

I choked back tears, too, at Elijah's first IEP. There is just something about seeing on paper how far our little ones have come and how much they have been through. It's a lot for a mama to handle emotionally.

Those goals you set sound GREAT! He will get there, and he has the best support system possible for getting there. Give him giant hugs for me and tell him NO EAR INFECTION!!!!