Tuesday, March 31, 2009

Ooops two more things

I added pictures and videos at DropShots

and today at the Doctor's they weighed him and yeah since Feb. he has gained 4# He's up to 37# He's like an inch longer too but I didn't catch those numbers

No wonder he's feel so much heavier. LOL

To many things to have a title LOL

Corb is doing so great. He's very happy, he's eating better then ever, he's doing great with drinking, he's calmer, he's some looser, he's reaching more, he's goober talking a lot more, his tummy hardly hurts, he's able to be in the standie, he's able to be on his tummy (a little), he's tolerating the arm and leg splints well, he got approved for his new wheelchair (he gets it in one month), he's going to have a 4 week trial with the Eye Gaze system (as soon as his chair is ready), his pump is up to 210 (he has another appointment next Tuesday to increase it again and to refill it) and as soon as he feels totally better we were given lots of exercises, ROM, therapy, breathing treatments and he now he needs an hour to eat. Because these are all things that the therapists, doctors and surgeons have added we may be able to get more PCW hours daily. I can't imagine I could possibly keep up with it all, without help. I put together a whole packet of information including what a daily schedule needs to look like, explaining detail by detail what needs to be done every day including all the extras and I added in all the reports, notes, exercise instructions and then I gave it all to the nurse from Corbie's PCW company to help with requesting more hours. We also hope he will get approved for therapy a few times a week soon too. Then we can cut back some of the PCW hours and then when he starts school this coming school year we then can cut the hours even more. I really hope we can get more hours at least for while. I did get one extra hour a day for three weeks while he heals. OK enough rambling :-)

Caradie and Corbin

Monday, March 23, 2009

Such a great boy

Sorry for the lack of updates, there isn't a lot we can do right now due to the incisions. I even brought him to the ER last night, because his back incision has a hard lump by it & there's fluid around his pump.

The ER doc called right to the floor where Corb was when he got the pump, they came to the conclusion that the one on his back may be the body reacting to the foreign objects (stitches) & the fluid was because the binder wasn't on tight enough. I thought I had it pretty tight but now I got it real tight (poor thing) There is less fluid though.

Today I did have him sitting/leaning against me while he had his knee immobilizers on. Long sitting has always been hard for him, so we went real slow.

I have been putting his splints on a few times a day, for a few minutes at a time, I'm trying to get him used to them, then when he feels better, he will be ok with them while doing the ROM with them.

He has been a great boy through all this. I'm very proud of him.

So far there's a few things he's already doing so much better, his eating is going so great he's even taking bites & he pushes his tongue out when he needs to burp & can't fit anymore in LOL, (the nissen is a little tight, he's having a hard time getting food past it), he's slamming his chocy milk & he's been goober talking, every day ALL day & so many new, silly sounds.

He's a nut!!!! :-D Like his momma.

Caradie and Corbin

Tuesday, March 17, 2009

It's working a little

video

video

My new on-line friend Julia, also makes things her self and these are one of her things.

She's selling them, e-mail me if you want to know more about them. corbinleeproject@yahoo.com

video

Caradie and Corbin

Monday, March 16, 2009

We're home

I'm so happy to be home. Corb is talking away at his shows. We were both sick of Blue's Clues but he didn't like anything else they had LOL "spoiled child"

Caradie and Corbin

Almost time

We are outta here in about a half an hour. YEAH!!!

Sunday, March 15, 2009

breaking outta here

We get to leave around 1:00 tomorrow YEAH!!! He has to have an upper GI in the morning and then we can start getting ready to go. (unless there's something wrong with his nissen)

We're increasing his pump again today and then again tomorrow.

His tone is finally starting to show signs of being looser so a few more increases and I think we can at least work with it. I know they need to be conservative but I do know it's going to end up needing to be a pretty high dose. Really after dealing with him being so tight I would take, too loose.

Caradie and Corbin

Saturday, March 14, 2009

Some videos

These videos are from yesterday and this morning

video

video

video

I ran out of battery on this one, I was trying to say the bed part is motorized, they brought it to his bedside and it can lower right into the tub.

video

Caradie and Corbin

Self esteem boost

This is what one of Corbie's supports wrote on his caringbridge guestbook...

Sweetheart,

I have just spent the last hour in a half to two hours looking over Corbin's website (http://www.corbinleeproject.com/) and his caring bridge site, along with watching the videos you have made at One True Media.

YES, that is a A special kind of LOVE!!! the song you picked out and somethings are just hard to put into words. Like the lyrics say, "You say it Best...When you say nothing at All"

I've read all the updates, all the guest book entires at his site, and looked at all the photos. I don't think I had the chance to get every single one, however, I went way back and just followed up to day. I've watched the video drop shots of Corbin from his surgery recently, and................all I can truly say...........YOU ARE AN AMAZING MOM!!!!!!!! You are a pillar of strength and an inspiration to everyone!!!

Yes, I've watched and seen the "tour" of your house that you have made a video on One True Media. Wow, my sweet lady, you need to have Tye come and build you a new house. Not for a new house, because no matter what, a home is what you make of it. And I truly have to say......that I see SO MUCH LOVE, SUPPORT, & HOPE in that home!!!! It doesn't matter the size, it's what's inside that counts!! And I see that and so much more!!!

Sweetie, you are such a deserving person and your family deserves this SO MUCH!!!!!!!! How I pray for you and your family to be nominated for Extreme Make Over, Home Edition.

Corbin has touched my heart way back in 06-07, when I learned of his story. Each and every time I drive by your house, I honk, and it's just my way of saying hello and that I'm thinking of you and supporting you and Corbin, along with your family. Don't give up home lady!! Hang on strong!!! I have faith for you. AND I must add, you are doing, and I mean truly doing.........an AMAZING JOB with Corbin. You have dedicated your life to Corbin and your family. Corbin and your family is YOUR WORLD!!! That is so BEAUTIFUL to see. I truly can feel and see the love that is in your house today and the support you give to your sons. I can see in Corbin's eyes that he LOVES you so, and loves his mamma so MUCH!!!!

You are such a beautiful lady, and even more beautiful on the inside. It's people like you Caradie, that make this world a better place to live.

May God Bless You Caradie, and I'm thinking of you, supporting you and praying for you and your family.

With much Love and Prayer,

Love, Dawn (a/k/a Former Author of ^Evelyn^ Lundeen's Caring Bridge Site)

Dawn thank you for being another faithful follower.

Caradie and Corbin

Friday, March 13, 2009

Address

Donna you are so sweet. I really can't think of anything but the address is
1620 N 28th St. Superior WI 54880

3rd day

Today there's been a lot of appointments. He had PT, OT, ortho & an x-ray.

So he now has new thumb braces, left wrist brace & his foot braces were resized. And he did a wonderful job getting his x-rays. He ain't a big fan normally.

Corb's gas cramps didn't seem to even come tonight so that's awesome but he had another BLOW out poo diaper but we got to give him a (kinda) shower.

Also he gets to start sitting up.

I just added today's videos to dropshots, they take to long to upload here.

Caradie and Corbin

Thursday, March 12, 2009

2nd day update

Corb is doing so well, he's talking up a storm and hyper as usual.

He had one IV and the foley catheter taken out so far. He has one IV left just in case he needs narcotic pain reducers. He doesn't seem to even be in that much pain though, he's just on tylenol 3 now and a little valium to help him fall asleep. Well accept this evening he had BAD gas pains, I mean bad, he was bright red, screaming & stiff as a board. But we got it. They gave him some gas meds, we put warming blankets on his tummy and I talked him through it. He has one more day of laying flat then he gets to slowly start sitting up, that will help with the gas.

He's still super tight so they are increasing the dose in the pump by 10% until he gets to the desired tone. So far he's up to 100 mircograms. Most kiddos are between 300-600

Well I'm off to bed. I will video tape him a little tomorrow to show how much he's back to himself.

Caradie and Corbin

Wednesday, March 11, 2009

Video of his tummy/pump

The doctor in going to increase the medication in his pump already. Tight little fart, oh & he's being a little fart too. He keeps arching his back & refusses to stay on his side lol

Anyway I'm on my own computer now. I figured out how to get it on-line. Yeah me LOL

Also a nurse gave me some batteries.

video

Caradie and Corbin

Tuesday, March 10, 2009

Surgery

Corb is doing good. He had a bit of trouble with waking up but other then that he doesn't seem to even be in much pain.

I'm so mad, I brought everything to video tape & I forgot batteries & my laptop won't pick up the wireless net. UGH!!!

Anyway it's been a very long day I'm heading back in to be with him & hopefully he will go to sleep soon.

Caradie and Corbin

Monday, March 9, 2009

No research and weather

The research coordinator called me today and sadly things did not turn out that he can be part of the study because every time they would have to do the testing, it would have to be in the cities and we don't have to go there to get the pump refilled so I ain't driving that far that many times for just that.

Also we are suppose to have bad weather coming tomorrow and of course we have to be driving right towards it, but I'm hopeful we can beat it. This needs to be done, I don't wanna have to wait. Keep your fingers crossed for us.

Caradie and Corbin

Saturday, March 7, 2009

Research and nerves

I got a letter in the mail yesterday. It was the hospital that's doing Corbie's surgery on Tuesday, they want Corb to be in a research study, the study is to see if they can better understand pain.

I spoke with the coordinator & from what she explained, so far I think we may participate but when she meets with me, we will discuss it more in depth. So I can make a formal decision.

The surgery is only 3 days away, I'm starting to be more nervous then excited but I know this is the right choice for Corb. Being away from the family for 5-7 days will be hard especially for Noah but it will almost feel like a mini vacation for me, sadly for Corb it will be a painful one.

Caradie and Corbin

Monday, March 2, 2009

Corbin's birthday...Surgery and more hours

Corbin's 5th birthday is in tomorrow. OMGosh how time flies.
We do not celebrate his birthday though. That little boy died that day. Can ya tell it's a hard day for me, still.

Instead we celebrate Corbie's anniversary, that's the day his new life began.
On May 22nd it will be 4 yrs.

His surgery is in 8 days. I'm so nervous and excited. This is going to be such a GREAT new start.

I talked to the scheduler at Corbie's PCW company today, she called to tell me that every shift is covered accept every other weekend morning. YEAH! It's hard to get into a good routine when there's always new people to training in. These are my favorite girls so far. Both are great with him and love to help me out. Morning shift 7:30 – 9:30 Evening shift 5:30 – 7:30
Sarah has every week day morning and every weekend and Wed night
Jenny has every Mon, Tue, Thu, Fri evening & every other weekend morning

So I only have every other weekend morning – I'll just deal that one my self.

Also I talked to her about the extra hour a day we get for three weeks after his surgery. I asked his RN if we could request more hours for a few weeks after his surgery. Well they figured out that Corb has an extra 24 hours a year anyway, so he gets 1 hr a day for three weeks YEAH (for me) If we need it longer, she will have to send in a PA (prior authorization) which is a pain in the @$$.

Well on that note LOL Corb isn't sleeping very well again UGH! I'm so very tired. Stupid weather, he can't get rid of this cold. He's supper stuffy and his cough is nasty. It's makes laying down pretty hard.