Sunday, August 31, 2008

Aug 18th long gone...

Tonight at supper Bill looked at me funny & he said sorry for something I didn't say, I told him hold that thought I need a drink, he just followed me to the kitchen so I knew something was up, he had this weird grin on his face & he said sorry again. I ran to the calendar & realized it's Aug 31st 2 weeks past our anniversary (Aug 18th) & neither one of remembered "at all"

That's just crazy too, our anniversary has always been extra special to us because we got married exactly 5yrs to the day, that we started dating.

It's been 18yrs together & 13yrs married.


Thursday, August 28, 2008

So very busy....

Things around here are crazy busy. I swear I have been on the phone with doctors, nurses, schedulers & therapist more the past few days then I have in the last three years all put together.

Many things have happened & are happening soon.

Aug 1st was Botox,
Aug 5th was the Upper GI x-ray test,
Aug 6th was OT with Sheila,
Aug 11th was the Dentist to clean his teeth, check them & put on fluoride,
Aug 15th was OT with Sheila,
Aug 18th was a day trip to the cities to see Dr. Faville & Dr. Saltzman the surgeon to discuss the nissen fundoplication,
Aug 22nd was with Dr. Murphy to give an update on everything that's happening – and OT with Sheila,
Aug 25th & 27th was for my finger,
Aug 29th will be OT for me & OT with Sheila

Now for next month.
Sept 5th is to re-check Austin's broken leg – and OT with Sheila,
Sept 8th is an eye check for the brothers,
Sept 9th will be with Heather Corbie's home bound teacher YEAH!!! we love Heather & she will also now be here every Tue for an hour & a half,
Sept 12th is with Dr. Beery for a pre-op – and OT with Sheila,
Sept 15th we leave for the cities,
Sept 16th is the surgery & he will need to stay in the hospital for 3-5 days,
Sept 23rd is here at the house with the MyTobii rep,
Sept 26th is socialization with Heather at the center,
Sept 29th is with the dietitian – we are going to put Corb on an over night tube feed to give him some more calories so he can practice other foods with out loosing nutrition.

Also Corb was accepted into the UMD eye gaze class, that will be 3 Thur's a month but we aren't sure of the start date yet.

I have contacted the PT dept at the college St. Scholastica to see if they can see Corb so that may be a few days a week too. Then in Jan. he will be seen by a OT there too.

And then for Oct. (so far)
Oct 3rd will be with Dr. Murphy to check how the surgery went & to discuss the Baclofen pump trial
Oct 7th we will be going to Hudson to have an eval to help get everyone on the same page with all Corbie's therapies.

We have also started the process to get Corbie a new wheelchair & we are also working on getting MA to approve OT & PT each twice a week.


Momma's turn for OT

I had a weird thing happen to me, so that's why I haven't updated lately.

Last week my ring finger on my left hand swelled to an enormous size, was VERY painful & I couldn't even move it. Then on Sunday I felt sick to my tummy & I started throwing up, my mom came to help out so I could nap & every time I woke up I would throw up again, this happened all day Sunday.

Monday morning first thing I went to the doctor & two doctors couldn't figure out what was wrong so they put me on an anti-inflammatory & by that evening I could at least bend my finger again. Wednesday I seen the one doc again & he said he feels it was just tendinitis & ordered OT because my finger is VERY stiff still but no pain.

Have any idea how hard it is to pick up a wiggly, 33# child with one hand LOL

Austin was a wonderful helper, I gave him $5.00 for helping.

I will update about Corb's upcoming stuff soon.


Sunday, August 24, 2008

Austin and Becca

This is Austin's friend ("ex-girlfriend") Becca, her dad & step mom got married and Austin was invited to come.

The suit is a little big but isn't he handsome. Darn sun was to bright LOL

Saturday, August 23, 2008

Camera crazy

I got camera crazy today.

This video is of the new way I have been teaching Corb to look at what I'm requesting.

At UMD they tried this while testing the MyTobii eye gaze system with him, but he had never seen a lazor pointer before so he had no idea what to do. But as you can see he truly understands now. We are hoping to get Corb into the speech clinic at UMD this year. Also the MyTobii rep is coming to our house in late Sept for an eval.

I used Corbie's new tumbleform chair on a computer chair and now he can sit up better and as time has been going on he's getting better and better with head and trunk control.

YEAH Corbie!!!

I used to brush Corb's teeth while he was laying on his changing bed because I needed to pin his arms down. But I tried him in his seat (thanks BabyCharlie) and as you can see he does great. Hopefully over time it will get even better.

Sheila-OT used Kinesio Tape on Corb.


Thursday, August 21, 2008

Testing again...

Testing one, two, three LOL



I'm testing a new function I tried adding to Corbie's website so if it works I will let you all know about this new function soon.


Foot plate

I have a video of Corbin using his new foot plate but because I had to record side ways I can't put the video on here, as I have not figured out how to rotate them.

So the video is on dropshots

Corbin likes to pick up his feet so that's why I made this foot plate. It has been working great, we use it every night. He practices standing and then when he bends down and he goes poo.


Wednesday, August 20, 2008

Surgery is in our future...

It's official, I have made the decision to go ahead with the surgery. The appointment is Sep 16th (daddy's birthday). We will go down the night before and stay in a motel because we have to be to the hospital by 7am and then he will be in the hospital up to 5 days.

I believe in my heart this will be a life changing event. Who wants to do work when they puke (spit up) in their mouth all the time.

I gotta go to the doc today too. Ugh!! My finger is all swelled up and hurts like mad. Bill thinks it's infected. HOW I do not know. But I will find out.


Monday, August 18, 2008

and we're back

We are safely home. The appointment went as I expected both Doctors agree that the Nissen Fundoplication would be the right thing to do. The surgeon gave me his card and I'm to call and set up a surgery date and it can be as early as next week even. I will update tomorrow when I for sure decide if I'm going ahead with the surgery and when it will be.


and we're off

Wish us a safe trip. we're off to the Twin Cities.


Sunday, August 17, 2008

Wal-Mart trip

I thought I would share a cute little story about what happened today.

My mother, Austin, Noah, Corbin & myself went shopping at Wal-Mart, while shopping Corb went poo (all by himself YEAH Corb) so I brought him out to the van to change him (the bathroom changing stations do not work with Corb he's to long & wiggles to much), I told grammy I would just wait in the van for them but changed my mind so Corb & I went back in, I started asking Corb where are your brothers, do you see'em, look for them & he began hysterically laughing, he would calm down & I would ask him, where are you brothers, do you see'em & he would just crack up every single time. He laughed throughout the whole store & ours is a super Wal-Mart. He got twice as many smiles from everyone LOL. We finally found our brothers & then he was all calm again. He even yawned LOL he was pooped from all the laughing.


Saturday, August 16, 2008

Corbin's learning to chew (part 1)

I'm so behind on my video updates that I added 3 parts. Look below for part 2 and part 3

Corbin has been eating by mouth since about a year after his accident but chewing hasn't ever come so I have been feeding him toddler treats from Gerber that have been working very well.

This video happens to be cereal puffs (melting kind so he don't choke)

These are the cereal puffs.

Corb also eats these now too. Yogurt melts.


Therapy with Shelia-OT (part 2)

Corbin loves his Shelia.

Corbin Lee is always such a happy boy, and boy do the weirdest things make this boy laugh. LOL


New fix (part 3)

After three years of using Corbie's g-tube on his changing bed, I finally came up with a solution to holding the feeding tube in the air while the water drains into him (bolus feed).

I shock myself sometimes LOL


Friday, August 15, 2008

Upper GI x-ray

I got a picture of the upper GI test that shows Corbie has reflux.

The white shadow (in the black outline) shows that the water (barium) starts coming back up his esophagus and this is just in a matter of a few minutes.

He spits up many many times a day, there are times that he actually has food particles in his mouth. Yuck sorry to describe in such detail but as I have said this will be the biggest decision I have had to make in Corbie's life. Everything else had been decided for me, like his G-tube, they never like asked me if I wanted him to get a feeding tube it just needed to be done so the Doctors just did it.

Monday, I will see the Doctor that is heading this decision & the surgeon that would actually be performing the surgery. From the input from both Doctors & my own feelings, I will make the final decision & then we will be able to go on with life, one way or the other.

Thanks for checking in on my sweet boy. has hit 50,000!!! it's so amazing how many people care about Corb without even meeting him. Thank you everyone.


Wednesday, August 13, 2008

Going to the cities

Hi Everyone,

No pictures or videos this time, just a medical update.

Corbin, Austin, Noah and myself will be going to the cities (St. Paul MN) to Gillette on Monday to discuss the Nissen Fundoplication With the doctor and a surgeon.

This is going to be the biggest decision I have ever had to make in Corbie's life. Everything else has been relatively easy, therapy therapy therapy, whats hard about that.


Sunday, August 10, 2008

New way to stand

I had to make a montage again, because I can't figure out how to rotate videos.


Meeting Missy

Corbin, myself, Austin & Noah went out to meet Maggie's horse, Missy.

Missy isn't really used to being around to many people but seemed to like Corb.

This is a boarding place so heres all the horses & ponies.


Saturday, August 9, 2008

Very calm day

Corb was very calm today. It's so fun to play/work with him when he ain't all stiff & freaking out.

He loves being in 4-point.

He can sit so well when he's looser. I have a love hate relationship with Botox. It works GREAT but it don't last long.

Part of what I'm behind in telling you all is that Corb had an upper GI (Gastrointestinal Tract X-ray (Radiography) ) last week. It was positive for reflux. So the next step is to see the Doctor again & a surgen to dicuss the Nissen fundoplication . This surgery will prevent that reflux from happening & hopefully make him more comfortable. I have always said that I feel a lot of Corbie's arching/pushing is due to his tummy always being upset, from reflux & not being able to potty very well.


Friday, August 8, 2008

Very hard day

Every time I tried to upload the videos they would get stuck so I thought I would make a montage out of them.


Thursday, August 7, 2008

Very behind

Hi everyone,

I'm very behind in my updates. A lot is going on including Jenny being on vacation so I have very little extra time. For now I would just like to leave you with a wonderful picture, for those of you who know Corb's story well, you will know immediately who this is.

YEAH!!! Maggie is back. I have a very sad news to tell you all though, Maggie will not be coming back to work with us. Things did not work out with the scheduling but theres VERY AWESOME news that goes along with the sad, Maggie & I have decided this is a good thing because now we can just be friends without the work relationship being over stepped. I'm so excited to have Maggie back into our lives. Corb took only a few moments & he begain smiling at her so we are pretty sure he even remembers who she is.

Caradie & Corbin

Monday, August 4, 2008

Moody man

Corb is always crabby for a few days after Botox because he has to take it easy and well Corb don't wanna take it easy EVER. He wants to go...go...go...

Friday, August 1, 2008

Botox day

Corbin has been getting Botox injections about every three months since shortly after his accident. We did take a break from it, so it's been at least 6 months since the last time.

Corb loves to watch what everyone is doing.

Until the TV catches his eye.

Corbin gets put under conscious sedation with, versed and ketamine, this is him almost fully sedated.

This machine tells the Doctor that she's in a mucsle before she starts injecting the Botox.

This is one of the many injections.

This is Corb fully sedated.

Heres all of the injection sites.

We checked into the hospital at 6:30am and we were home by 11:30am. They know I know what I'm doing so they just let us leave.