Baclofen Pump Trial

Tomorrow is the BIG day!!!

I, of course will have plenty of video clips. Austin is even coming with to help tape, Shhhh he gets to ditch school.

This whole process of deciding to even go ahead with the pump trial, has been very long & stressing. The talk of the Baclofen pump has been for about 3yrs & with his two parents not agreeing on whats best for him, it becomes a struggle to figure out who's right.

So lets just hope it's me LOL I wouldn't be able to live with myself if something happens to him.

Caradie & Corbin

Comments

When ever there's a comment, I will comment back, right in the comments.

I tested it and it worked so that will be an easier way to get you comment &/or questions answered, instead of me having to write a new post :-)

Thanks everyone

Caradie & Corbin

MacGyver at it again...

Corbie's onsies are getting to small & they don't make bigger sizes. So, I had to come up with a way to make his shirts into onsies.

Well....

Caradie & Corbin

Old floppy discs

I was looking thru my old floppy discs & found some of Corb when he was about 1yr, I don't cry much about Corb anymore but the tears are running.







This boy was so full of life.

But....

This boy touches every ones soul!!!!


Thank you everyone for following Corbie's story.

Caradie & Corbin

More practice w/a spoon

Updating with videos to the blog takes to much time for tonight so please check out http://www.dropshots.com/BabyCorbin

Corb has been practicing eating pudding with his teacher every Tues & he totally knows what to do, it's just his hands/arms don't do what he wants them to do but he's trying sooooo hard.

As you will see I got some scraps of carpet that I patched together to make a softer spot for Corb to play & he loves it. He also loves his new toy rack.

Corb also got a walker he gets to try out for a few weeks. I won't be posting the videos of him in it until I get many days first. I will need proof that he will be able to use it for medical assistance. It's only been two days & he's AMAZING!!!!!!!!!!!

Caradie & Corbin

Jammies & a new invention

Grammy got Corbie Jammies for Christmas (Thank you Grammy)

He looks like such a big boy & he has nice open hands.

Me & my craftyness LOL

Caradie & Corbin

Real update

Sorry is something doesn't make since LOL I don't feel like rereading it again.

Since Corbie's Nissen Fundoplication surgery there has been a few bumps in the road, his g-tube site got very irritated & one of the little incisions got infected, he was hurting pretty bad, now his tummy is totally healed & he's feeling great but he has started this weird snorting/gagging issues, I won't get into details but after some work I finally got the doctor to listen to me. He's now on Zytec, also less stool medication but that has nothing to do with the gagging. The Zytec is to help loosen up the secretions, so he can swallow them easier. The snorting is still there but the gagging is gone.

Corb has also been doing very well with his home therapies. We started brushing & joint compressions-SI (sensory integration), spinning, swinging, floor time & practice eating different foods again. It feels great to be back in a routine.

Monday 11-3, we had an appt with one of Corbie's doctors & we have decided to go ahead with the Baclofen Pump trial. The trial is scheduled for Dec 1st I'm VERY excited & a little nervous, the trial is around here but the doctor wants the actual pump placement to be be done in the Cities (3 hours away). On Monday 11-10, I decided to call the doctors office, I left a message stating that I wouldn't be able to make it to the cities ever, because on Wednesday 11-5, we went to Hudson (3 hours away) & the check engine light came on & was on just about the whole ride home so I won't be driving that far away anymore, well the doctor personally called me, we talked about why I couldn't make it down there & he said he wants whats best for Corbin & the doctors in the cities are whats best so he said I promise you, I will get a ride there & back. WOW!!!!!!!!!!!!!!!!!!!!! (the family & child social worker from the hospital in the cities already found us a ride when ever we need it)

The reason we went to Hudson on Wednesday was because a very special lady, we know was able to get Corbie a special fund & we choose to use the funds to go back down to Hudson for evaluations, home programming & then some therapy equipment, that would help with the home program the therapists come up with. I haven't ever posted about this yet because I wanted everything to play out first. So the evals are done, now we just wait to find out about the equipment.

Another thing going on is that at St. Luke's where Corbin goes to for therapy, as of yet he still only gets OT. PT & ST have been trying to get coverage from Medical Assistance for a year now, with no luck. I talked to the ST that would have Corb if it ever gets approved & he said he wasn't comfortable doing feeding therapy anyway so Corb had an eval with the other ST there & we will see if she can get him approved.

And I also have been in contact with an advocacy place in WI & we now have an attorney to help fight the screwed up system. I have also decided that if this other ST can't get things approved, we are going to have to go to another facility.

One thing I learned in Hudson that I think will be a big help is, if Corb does get the pump, there's something called “New episode of care” that should make him more inclined to receive, more intensive therapies so we will be shooting for PT, OT & ST each 2x a week right away (after he feels better after the surgery). I'm going to demand he get better services because he will need to relearn everything he knows now & MORE & I'm only one person.

Now for sleeping...
As I said in my earlier post Corbie did great last night & just about every night now he might fuss a little but he totally falls asleep on his own. (Besides last night) he was still waking at least once a night. I'm hopeful that this awesome behavior will continue!!!!!

Oh one more thing our new worker seems to be a nice girl & I'm hopeful that she will work out.

Caradie & Corbin

Sleeping

I promise a full update is coming soon but I still haven't finished it, since we got the 2 hours back of our PCW hours, I'm training in a new girl so I don't have time to even think LOL

Anyway, I had to share last night.
I have been doing a whole little routine at bedtime & then telling him good night & that I'm leaving & well last night he gave this cry face he does, just saying hey I ain't OK with this, but he never started to cry, he never did cry at all & he fell asleep within 30 mins & then about an hour after he was sleep, I did need to come in to roll him back onto his side, (when he gets mad he flips onto his back & he only like to sleep on his sides) & well then guess what... my sweet boy slept until 5am & fell back to sleep right away until 7am WOW!!!! What a great night sleep. He almost always wakes up at 2am & sometimes even at midnight too.

Sweet friend thank you again for the weighted blanket. I for sure think it's helping, I also think he understands he's a big boy now :-)

He's downstairs right now belly laughing at the TV. What a nut.

Caradie & Corbin
http://www.corbinleeproject.com/

Renewal

Well you all will be able to follow Corbie's progress for another year LOL I just renewed the websites annual cost.

Caradie & Corbin

Weighted blanket / comment

Just wondering.......what is a weighted blanket and why would it help Corbin sleep?? Thanks......you are in my prayers.....nanci Posted by Anonymous

A weighted blanket is just like those weights for you ankles when exercising. It has been found that children with sensory issues benefit from a weighted blanket, as it gives them a sense of comfort. You know how when a baby is first born & for a few months you swaddle them in a tight blanket well I guess this is kinda the same thing.

Please always feel free to ask questions.

Caradie & Corbin

Weighted blanket

I asked a wonderful friend of mine (that is very good at sewing) if she could make Corbie a weighted blanket, since he has such a time sleeping I thought maybe that would help, well she didn't feel comfortable making him one, so she she bought him one.

Isn't it sooo cute

Thank you friend!!!

Caradie & Corbin

YES WE CAN - Bob the builder

Every time Obama said YES WE CAN, it seemed like it must be like a famous saying or something & well it is LOL Someone left a comment on the last post "YES WE CAN", asking, "Isn't that Bob the Builders line" & I looked it up. It toally is his line (catchpharse)

"Can we fix it? YES WE CAN!



A big update is coming soon.

Caradie & Corbin

YES WE CAN

I have never been a political person but I did my part yesterday & I voted for our new president.

I stayed up & watched Obama last night needless to say I was moved, I teared up many times & I am very proud to say YES WE CAN

It's time for change, I just hope it's soon.

Caradie & Corbin

Going to bed on his own

So today with Mrs. Heather (Corbie's early head start teacher) we worked on my goals. I told her I want to still stick with putting Corb to bed on his own. We also discussed the fact that I have been just staying in the same room & her BIG push was maybe I should just leave after I say goodnight, well I himmed&hawwwed about it forever LOL & I finally gave in LOL

So guess what? I did exactly that. I sat him on my lap & explained everything to him, that he gets to have his pretty music & his pretty lights & that momma was going to go down stairs & well he's sleeping, it took only about an hour & he only cried for a few seconds. I think it was because his light show toy stopped. I'm so totally completely proud of him.

Side note Corbin, Austin & myself are heading to Hudson http://www.specialchildrencenter.com/ tomorrow for an eval with PT & one with OT. I will explain more after the appointments. We will leave at around 11:30am & wont be home until about 9am It's yucky that it's going to be a long day but I'm so excited to see them all again.

Caradie & Corbin

Using a spoon

Corb & Mrs. Heather tried something we haven't tried in a long time, due to Corbie being to tight but he did a great job!!!!

All the marks on his face are where he got the pudding spoon to (ALL by himself).

He was totally freaked out when the pudding flung onto his head

Caradie & Corbin

Corbin's new little TV

Bill's dad was getting rid of a TV, so we said sure we can always use another TV. When I found out how little it was I was so excited because I have always wanted a TV for the floor, for when he is playing on his tummy & sitting, so he doesn't have to look up, it makes him exensor tone kick in really bad.

Well the new TV works great.

Today when I had him on his tummy he hardly pushed/wiggled at all & this afternoon I had him on his knees (sitting on his heels) & his arms on the floor & he was doing so amazing, he was balancing well & when I would say whoa your falling he would giggle & he would push a little to help try to catch himself (which he NEVER used to do).

If I had someone to help keep his attention, while doing these activities, I wouldn't have to use a TV LOL but it's working VERY nicely.

Caradie & Corbin

Getting tough, isn't going well

Last night I laid Corb in his bed & sat on my bed, just like the night before, but things didn't go very well. He cried off & on for over an hour. He would stop crying fall asleep & just when I would think I could leave he woke up crying even harder. So I finally took him out of his bed to burp him (only to burp him, really!!! :-D ) well he fell asleep in my arms & only woke up once during the night.

I'm really going to keep trying it's just so hard to hear him scream like that. Spoiled I know!!!!

Caradie & Corbin

Clarify & getting tough

Thank you for all the comments, I just wanted to clarify, technically it's not a "new" bed.

Corb has always had this same bed, it's just that daddy build a frame to make it higher for me.

As for everything we don't have money, so we have to think outside the box & make it ourselves.
So now for the exciting/sad part. I have decided it's finally time to get tough on my sweet baby boy. As most of you know I lay with Corb to make him fall asleep well it's time for him to be a big boy & learn to fall asleep without me. SOOOO yesterday I showed him is new bed, laid him in it & explained he was going to go nigh nigh by him self tonight, then last night I just laid him down & sat on my bed & well it took an hour of crying but he did it YEAH!!! He only woke up once during the night & went right back to sleep.

Here's him after falling asleep all by himself. I'm so proud of him (& myself LOL)


Dosen't he look so tiny.


Caradie & Corbin