Update from Steven

As promised, here is the update on Steven!  He continues to do great things in Abilene!  He is signing more and has started shaving!

His new favorite sign is "finished" which looks like he's shaping an hourglass in front of himself.  He has mastered it.  Last time I went to visit, we dropped in to say hi to his case manager and behavior coach.  I got to say a quick hi.  Then, Steven signed "finished".  I asked if he was really finished, he answered "yea" verbally, took me by the arm and escorted me out the door!

He is also signing toothbrush, chip, and popcorn.  He's been a bit reluctant to sign popcorn until he went to the movies last week.  His primary aide, Jeff, keeps Steven busy during his down time. They went to the movies and he gave Steven a little popcorn.  Steven tried to grab it back and Jeff said not yet.  Steven started signing "popcorn" without prompting!  They called us via skype that night and told us all about it!

Speaking of skype, we've been skyping with Steven a few times each week and he's become a master at it.  If you are interested in skyping with him, let us know your skype id and we can ask Jeff to skype you one evening!

In addition to growing up, Steven has taken to wearing shades!  He steals EVERYONE's shades at the house.  If a staff member can't find their sunglasses, they search Steven's room.  He doesn't care of they are male or female glasses!


Next month, he will be 15.  Troy can't travel down for a birthday party, so Steven and Jeff are coming up here on 9/15 for us to celebrate!

B

The Blog is Revived!

I haven't blogged in a while.  Mostly I just got tired of blogging about nothing.  Life was just going along and it was same old thing day in and day out.  I received several complaints about the lack of info.....encouraged gently (and not so gently) to get back blogging.  So, finally things are changing and I have stuff that's worthwhile to blog about....at least in my small little part of the universe!

Tonight's topic is Megan.

She has grown up so much this summer!  In fact, some things I'm not even ALLOWED to blog about (aka the boyfriend).....!  But, here's it in a nutshell!  Megan got her license, a boyfriend, and A JOB!  A REAL JOB!  The kind that involves scheduled hours, a boss, a uniform, and even has a 401k!  

 Here is Megan in her uniform!  She is now part of the the theater crew at the AMC Theater near us!  We are so proud of her and excited to start seeing free movies!!!

However, the job is not all good.  See the shoes below......enough said.

As previously stated, I'm NOT ALLOWED to blog about the boyfriend.   But, rest assured he is a really nice guy and we are proud of her choices!

I will try to post an update about each of us over the next few days.

Love to all!
B

Can't Sleep

I can't sleep so I figured it's a good time to update the blog. Troy's surgery went great! He is recovering quite nicely and we couldn't be happier. It's hard to believe it was only a week ago today. It's been a long week. He is still walking with a walker but hopes to graduate away from that soon. He's learning how to move around without stretching, twisting, bending and not picking up anything heavier than a gallon of milk. We are extremely lucky and grateful to have Grandma Jane here to help us out! With me gone all day at my diagnostician program, she has been a Godsend in caring for Troy. Not to mention all the groceries, cooking, laundry, and love. We can't thank her enough. Megan got her driver's license this past Tuesday so she is driving all over town exerting her independence. It's a weird feeling seeing her in a car all alone. Reminds me of that insurance commercial where the little girl is talking to her Dad from the front seat of the car. He's telling her to drive careful etc. She's really 16 but the Dad still sees her as a little girl. I can relate to that commercial! Steven continues to do well at his school. They are on summer break and he's a little out of sorts with the change in routine. But, his case manager says they are working on developing more routine at the home to help out all the boys who are struggling. I know how difficult school breaks were when Steven lived at home. I can't imagine how challenging it is with 10 autistic boys at one time!!! As I mentioned earlier in the post, I am doing the diag program. This is the end of the second week. I'm loving it, but am extremely tired. The drive is an hour each way. Class runs 9 to 4:30. Then, we have to evaluate people using the assessment tools. Very time consuming. Last night was the first night this week that I was home before 8:30. Needless to say, I'm ready for the weekend! Whew.....I unloaded my brain. Maybe I can sleep now?

Life as we know it...

Just after I last posted, I went into the kitchen to pack my lunch.  A pipe in the ceiling burst.  Water everywhere.  Please excuse the chaos in the video.....we just think it's funny now.  At the time.....not so much.

So the past few weeks have been spent dealing with the flood. The loud fans and louder dehumidifier are gone.  The walls are repaired and painted.  The wood floors just got finished yesterday.   The insurance company's computer repair people picked up some computers that got wet to see if they are salvageable.  Several pieces of furniture are damaged and will be repaired or replaced.

During that time, Troy's EEG was running.  I am following up with them today to make appointment for results.

Megan's ankle never got better and then she fell again on 5/10 as she was getting out of the shower.  Another trip to the ER where they put her in a cast.  Met with the orthopedic doctor yesterday.  It's a stress fracture and he put her in a fracture boot.  Another few weeks on crutches and physical therapy.

Troy has had two surgeries on neck in these past few weeks.  These procedures result in more pain for 2-4 weeks post op.  He's definitely feeling the pain.  He is hoping to feel some of the benefits of the surgery soon!

On Monday, we got official approval that his fusion is approved!  We are so excited that this pain might actually be something in the past after he recovers from the fusion!!!  Surgery is scheduled for 6/8.

Steven is doing well but has had a few bumps in the road.  He ate a glue stick at school.  He's had some behaviors that have resulted in injuries to staff.  The good news is that his primary caregiver on 2-10 shift is coming back!  Jeff had taken another job but is coming back to Steven!  Yesterday was his first day back.  I'll text him later today to see how everything went.

I am wrapping up the school year.  Our last day is 5/31 and I have to be out of my classroom entirely by 7:30 pm because of renovations.  Since I am not returning to the classroom next year, I also have to get rid of lots of stuff from my room.  I've decided to donate lots of it to Steven's home so they have craft materials and games for summer.

So there you have it.  Life as we know it. 

B

Amazon Rocks!

I just have to post about my recent interaction with Amazon.  I ordered a book for book club and had forgotten to update our address.  The book shipped to the old address.  The new people said it was not received there.

I decided at 4:45am this morning to contact Amazon.  They were there!

They apologized for the inconvenience (caused by my error).  They are sending me the book overnight at no charge.

I totally expected them to blame me, charge me again for a book, and not get the book in time for book club next week.

They totally surpassed my customer service expectations and I had to share!  They have a loyal customer in me!

B

Our Calendar is filling up fast

It's been a busy couple of weeks for us.  It's hard to believe Troy has been off work for two weeks already.  We've made progress in his various doctor appointments and things are moving along.

Last Wednesday, the doctor performed a rhizotomy on the left side of Troy's neck.  This procedure cauterizes the nerves in the neck where they come out of the actual vertebrae.  The procedure aggravates the nerves and patients usually experience increased pain levels for the first week or two while the nerves settle down.  Troy is now one week out and it starting to hope for some relief.  We met with the doctor today and scheduled the rhizotomy for the other side of his neck on 5/1.

In the meantime, we also met with the new neurosurgeon this past Monday.  He agreed with the first neurosurgeon that Troy would benefit from a fusion.  They are submitting to insurance and feel confident it will be approved.  They even scheduled the fusion for 6/8.

For those who didn't already know, Troy has also recently developed seizures that the neurologist says are common after a brain injury.  The neuro did an EEG in the hospital when Troy was admitted in February and wanted a 48 hour EEG.  It took some finagling from insurance and providers, but they got it scheduled today.  A tech came to the house and set Troy up with his electrodes on his head, a battery pack to record the results, and video cameras around the house to record as well.

So that is life in a nutshell for Troy.  He sleeps alot and is finally allowing his body to rest as needed.

Megan's foot is not any better.  I talked to Troy's doctor today about Megan and he thinks it warrants seeing an orthopedist.  Tomorrow, I will make the appointment for that.

So, our calendar is quickly filling up.

B

What a week....and it's only Wednesday?

Hello All,

Thought this week's events warranted an update via the blog instead of the myriad of phone calls it would take to update all of you.

Let's go back to Sunday.....we had a lovely time at Megan's swim team end of year banquet.  Troy did well and lasted almost the entire 4 hours!  However, that evening he developed some increased pain in his right leg.  By 3am, his right foot was throbbing.  The next morning he couldn't bear weight on the right leg or foot.  He wanted to give it some time to get better in case it was a flare up related to nerves in the spine. 

I called the doctor on Monday afternoon and the said it sounded like a "flare up" related to the nerve issues in his lumbar spine.  They scheduled him for an injection procedure on Tuesday afternoon.

Troy followed all pre-surgery protocol....no meds, no coffee, etc.  Tuesday afternoon came and so did the tornados.  The surgery center called as we were getting ready to head out and cancelled the procedure.  They rescheduled for today.

Today, Troy followed the pre-surgery protocol....no meds, no coffee, etc.    We head to the surgery center.  They take him back for pre-op, start the IV and looked at his foot.  The doctor decided it was a no go.  The foot looked "not normal" for a flare up.  It was swollen (more than it had been), red, and warm to the touch.

They sent us to another doctor to figure out what it was.  Troy has no fever.  There are no signs of a bite, a scratch, a lesion, etc.  They did x-rays and there are no breaks.  They showed it to a foot/ankle specialist who wants to see Troy next week....after antibiotics and anti-inflammatory meds.  For right now, they are treating it as an infection.

And, the pain doctor said it's time for Troy to go back on disability.  Troy is worn out mentally, physically and emotionally.  So, tomorrow we make the calls to start the disability leave.

Tomorrow we also have an MRI scheduled for his lumbar spine.  The new neurosurgeon needs an updated MRI in order to re-submit to insurance to get the fusion approved.  Then, we are scheduled to see the neurosurgeon again on 4/23 to review the MRI and resubmit to insurance.  We had to take that appointment because we've been trying to limit my time off work by requesting late afternoon appointments.  Since I am currently on a leave of absence (as of yesterday), I will begin stalking the neurosurg to see if he can get us in sometime Friday or Monday to review the MRI in order to speed up the process.

The neurologist also called yesterday to schedule the 48 hr. EEG due to the seizures.  I'll try to get that worked in over the next few days too.

So, that's our week in a nutshell.

We are going to sit on the couch and watch TV tonight and try to relax a bit.

Love to all,
Bets