Surgery, Seizures, and Sunshine

How is it that a month goes by and I can't find time to post?


Briefly, here's a brief summary of this past week.


surgery--Troy had surgery #12 on Friday and it was not successful.  This upcoming Wednesday, he will have surgery again as a last ditch attempt to avoid spinal fusion.  Needless to say, his spirits are low.


seizures -- Steven had a breakthrough grand mal seizure.  The cause is unknown, but could be related to his anti-seizure dose needing to be increased since he has grown so much or related to hormone changes in puberty.  Saw him yesterday and he is doing great.


sunshine -- 111 degrees in Abilene yesterday.  It was really frickin hot!


Megan is counting the days until school is out---as am I!  I'll try to post more to update during this upcoming week.  But, with a conference, a field trip, meetings, and university work, it will probably be brief!


Hope everyone is doing great!

Our Jammin Jag

We are so proud of Megan!  She has been selected as one of the "Jammin' Jags" and will be receiving a certificate at the award ceremony on May 9.  The letter we received states that a teacher has nominated Megan due to her exceptional skills in many areas and the awards are given only twice per year.  We don't know who the teacher is, but a copy of the recommendation will be included with the certificate. 

Megan has been working so hard in school this year!  She has straight A's, has made great friend choices, and is a young lady we can all be proud of! 

We are so proud of you Megs!

Love,

Mom and Dad

Update direct from Troy

I am cutting and pasting the email that Troy sent today for those that did not receive the initial email.

Hey everyone,

I just got back from the surgeons office and it’s looking like my body just doesn’t do well with steroids since they haven’t worked on my neck or back. So we talked about my back and he informed me that on the original mri, I have a disc tear around t10/t11. He said sometimes people will have a tear without any pain but others there may be fluid leaking which irritates the joints and tissue. He didn’t tell us about it before because he treats the pain and not the scan. So this next one will be an epidural and a massive steroid injection. He said one or two of these should take care of it as they will be using their strongest steroids. These are great doctors and they do everything according to protocol. They won’t waiver, skip a step or anything. He really doesn’t want to cut the nerves so we’re doing one or two of these and if there’s no relief then we’ll do a block test and then cut the nerves.

So there you have it, you know everything that I know!

Troy

And so it goes.....

Troy's procedure does not appear to be helping his pain levels. He sees the doctor tomorrow for follow up and will (hopefully) find out what comes next. In the meantime, he is back in physical and occupational therapies.

Megan is continuing her physical therapy and doing well. Last Friday, her range of motion in her shoulder was 44% and today it was 67%. That is a huge jump and she is thrilled!

We are finally getting the hang of getting everyone where they need to be at the right times. I leave for school about 6:30 am so I can get stuff done before students arrive at 7:35. Megan rides the bus and leaves about 7:15. I dismiss students at 3pm, and leave school by 3:30 to pick up Troy and take him to physical therapy. Megan rides the bus home and arrives home about 4:15, which is when I get back from taking Troy to PT. Megan has a snack, then we head back to the therapy place by 5:00. From 5-6:15, Megan has PT and Troy has OT. When they are both done, we come home about 6:30 pm, prep dinner, Megan and I do homework, and we try to have some chill time. It makes for long days 3 times a week, but they are both benefiting and that makes us happy!

While they slave away at therapy, I have become a master at a mindless game on the iPad called "Coin Dozer". Do you remember that game at the arcade that looks a little like this?Well, I am the master of the game! I know I could make better use of my time sitting there, but it sure feels good to do something mindless for a little bit!

It's starting to get hot here......91 degrees today. There was talk at school that it might be "too hot to go out for recess". I muffled my laugh when I realized they were serious.

And so it goes in the Gilchrist house.

Betsy

Here we go......

The time has come to attack Troy's lower back pain. Today we will head to the surgery center for some facet injections which will hopefully alleviate his pain in that area. Here is a description:

A facet joint injection serves several purposes. First, by placing numbing medicine into the joint, the amount of immediate pain relief you experience will help confirm or deny the joint as a source of your pain. That is, if you obtain complete relief of your main pain while the facet joints are numb, then these joints are likely your pain source. Furthermore, time-release cortisone will be injected into these joints to reduce any presumed inflammation, which can, on many occasions, provide long-term pain relief.

I have to tell you, my husband is the most amazing man I have ever met (well, in addition to my Dad). Troy has been dealing with this pain for 9 months now. This is his 9th procedure to try and get him back to where he was before the accident happened. Through it all, he does his best to stay positive, live life, and ignore the pain. Let's hope that today's procedure works and he can be pain free.

I love you Troy!

B

It's hard to believe it has been a year today since Steven went to live at the group home. You guys were the only people we had to talk to about it. There really is not any parent support groups out there for parents who get to the point that their child can no longer safely live at home.

It felt like the end of the world, but really it was the beginning of something wonderful for Steven. Sadly, our world based on juggling all of life's responsibilities got in the way of Steven's need for structure and routine. We did everything we could but in the end, he is happier living at the group home.

Today, we still wake up with tears of sadness not having our son wake up under the same roof. We still grieve for the loss of the intact family we had always dreamed of. But, we can smile now. We can see how much Steven has developed and grown. He gets his haircut without anyone being injured. He goes on outings without self injurious behaviors. He is signing more. He is learning how to have chores and responsibilities. He loves to play on the swings. He has friends.

It's been a long year, but we will survive this. Steven will even thrive because of this.

Next year I'm getting a flu shot

It's true. I have no excuse for not getting a flu shot. My school provides flu shots on site for teachers. It's free. They schedule it after school and all staff shows up and gets the silly shot.

Only this year, I did not.

I had the hernia repair surgery and was on medical leave. Technically, I was not allowed on campus while on leave. I mean they wouldn't let me in campus for an IEP so why should a flu shot warrant an exception?

Now I know why.

Friday morning at 2am I woke up. I normally wake up at this ungodly hour to begin my day. No one knows why, but that is beside the point.

I had shakes, chills, headache, body ache, and couldn't think clearly. I stayed in bed and slept until 5:30. When I woke up, I was feeling worse instead of better. My clothes were soaked with sweat. So I went to school----actually Troy drove me to school---to make lesson plans for the sub.

I was home and back in bed by 6:30am.

Next thing I know, it's Saturday at 1pm and I wake up feeling a lot better. I'm still in recovery phase, but can think clearly enough to remember I need a flu shot next year.

Alot happened when I was asleep.

Megan also came down sick and was sent home from school on Friday. She is also on the road to recovery.

Troy drive himself to physical and occupational therapies.

I missed 11 text messages on my cell phone.

I missed 4 message on my cell phone.

Yep, next year I am getting a flu shot.