May 30, 2006

Michael had some outside time this weekend. We went to a couple of parks and sat in the yard for awhile.  We have always spent a lot of time at parks and
he still seems to enjoy it.  

Michael is NPO, which means that he cannot consume anything by mouth. Since he does not swallow at the appropriate time, he can aspirate. However, if
you put a small amount of certain foods on his tongue, he will swallow safely. He used to love tapioca pudding, even though we never knew exactly what
tapioca was.  We would discuss it every once in awhile, so I waited until he had a mouthful of pudding  and  I told  him that tapioca was dragonfly eggs.  He
didn't like it so much after that.  Yesterday, I gave him some pudding and he seemed to like it.  I guess he forgot about the dragonfly comment.

Take Care,

Dave
May 26, 2006

Therapy day for Michael.  He was in a good mood and the speech therapist got him to smile a few times.  The occupational therapist talked about alternate
ways for Michael to communicate.  The physical therapist gave him some range of motion, but could not bend his left leg.  I had to help and he fought me,
too. I won.  The day tired him out and he is resting comfortably.

Take Care,

Dave
May 23, 2006

Michael was in a good mood yesterday when he woke up.  He was laughing and vocalizing.  I messed with him using an electric toothbrush. I would wait
until he opened his mouth, then I would put the brush in his mouth and stimulate his tongue. He would clamp down on the toothbrush and I would wait until
he let go and do it again.  I don't know how he felt about it, but I had fun. Michael refused to urinate all day, so I tried sitting him up, rubbing his abdomen,
and rocking him in a chair. I finally tried putting his hand in warm water. I had always heard that by doing that, you could make someone pee and that it was
fun to do to someone while they slept. It worked as advertised.  

I am still behind on answering my emails. Donna S., Marilyn W., Sue (Maw-Maw), and all the rest, I will answer soon.

Take Care,

May 22, 2006

Michael had his therapies again on Friday. I talk about PT, OT, and ST.  Here is a summary of each discipline:

Physical Therapist (PT) - Concerned with helping the patient regain maximum functioning of body movement or preventing further deterioration of physical
function of patient.

Occupational Therapist (OT)- Concerned with helping the patient with activities of daily living (ADL) and with recovering functions which help them return to
gainful employment and maximum independence.

Speech Therapist (OT)- Concerned with helping the  patient return to normal or alternative patterns of communication.

We took Michael to the park yesterday and he seemed to really enjoy being there.  He laughed the entire time. When it was time to load him into the van, a
truck was parked next to us in a handicap parking spot unloading picnic supplies. He did not have a handicap tag and did not appear to be impaired.  He
was parked so close to us that I  could not put the lift down.  I asked the guy to  move his vehicle from  the handicap spot. He complied, but I don't think he
was happy about it.  It really pissed me off.  Not only is it against the law, it is a lack of common courtesy.  Gotta love people.

Michael is going to Brooke's house for a while today.  They will go to the park, then therapies, and probably return to the  park.  Michael will have a busy
summer. Come to think of it, he had a busy summer last year; this one has got to be better.

May 19, 2006

Michael gets 2 weeks off before he goes to summer school. He will stay busy with therapies and going to the park with Brooke. He got his hair cut
yesterday and he looks good. His heart rate was up at bedtime and he seemed to be uncomfortable.  I gave him some Advil and checked on him a couple of
times during the night.  His heart rate was normal and he was sleeping well.

Silver Sands School has hired an additional nurse to help Heather with her duties. This will give her time to breathe and ensure that the kids will be safe in
case of a medical emergency.  My hat goes off to the school board and Mr. Boutwell, the principal, for bringing another nurse on board.

I have added a new link, www.lauralaughlin.com.   If you have a chance check it out.

Here is a picture of Michael at the beach.  He didn't drown that day; I was there.
May 19, 2006

Michael gets 2 weeks off before he goes to summer school. He will stay busy with therapies and going to the park with Brooke. He got his hair cut
yesterday and he looks good. His heart rate was up at bedtime and he seemed to be uncomfortable.  I gave him some Advil and checked on him a couple of
times during the night.  His heart rate was normal and he was sleeping well.

Silver Sands School has hired an additional nurse to help Heather with her duties. This will give her time to breathe and ensure that the kids will be safe in
case of a medical emergency.  My hat goes off to the school board and Mr. Boutwell, the principal, for bringing another nurse on board.

I have added a new link, www.lauralaughlin.com.   If you have a chance check it out.

Here is a picture of Michael at the beach.  He didn't drown that day; I was there.

May 18, 2006

Michael had his therapies yesterday at FWB Medical Center and Brooke said that it went well.  One of the therapists used a strap to hold his head up and
he tolerated it.  That is a surprise because he hates to have his head restrained.  

One of the things that I watch with Michael is his urine output.  What goes in must come out.  When I got home after work yesterday, I found out that he had
not went in almost a day.  I loaded him into his chair to take him to the hospital to have a Foley catheter inserted. I told him what a catheter was and where
it would be inserted if he didn't pee. As I was about to load him into the van he decided it was time to go.  I don't know if he thought about what was about to
happen or if his bladder had enough, but he went.  He has gone several times since then, so I guess he is ok.  I will, of course, still keep an eye on him.

Today, Brooke is taking him for the haircut that he was supposed to get a couple of weeks ago.

This is the last day of school.  Michael would be finishing his freshman year, but that is postponed for a while.  

Hello to our friends Down Under.

Dave
May 16, 2006

Michael's sleep schedule has been a little off lately.  He has been getting up early and takes little power naps throughout the day.  I will try to get him back
on track because he does not need to sleep through his therapies.  

Michael really liked to eat sushi.  He would mix soy sauce with wasabi and pig out. I keep a tube of wasabi around and occasionally put it under his nose
trying to trigger a memory.  He raises his eyebrows when I do it, but I'm not sure if it triggers a memory or just irritates his nose.  Stimulation.

Either Michael has put on weight, or I'm getting old, but I am to the point where I will have to use the dreaded Hoyer lift to do the transfers.   My back has
been telling me for a while to use the Hoyer, but I have not listened.  I am listening now.

May 15, 2006

Michael woke up early this morning.  He started therapies today at FWB Medical Center.  The OT put his hand in a bowl of dried beans and moved it around.  
She did this to give him stimulation.  We discussed ways to try to get him to communicate.

During PT, we rolled him onto his stomach.  I was very surprised because he tolerated it very well.  He received range of motion and didn't seem to mind it
at all.

In Speech Therapy, he was given ice chips to see if he would swallow as the ice melted. He swallowed when he was supposed to every time. He was very
tired and I had to hold his head up during the session.  He was given a sucker (lollipop) and he seemed to like the taste.  I was given some Runts because I
held his held so well.  Brooke got a pack of Bottle Caps for doing nothing.

Brooke brought him to the park after therapies and was irritating him when I got home.  She likes to brush his hair, wash his face and all that girly stuff.   I
messed his hair up after Brooke left.

Take Care,

Dave
May 11, 2006

If the weather clears, Michael will be able to get in the pool at Silver Sands School . I am looking forward to that, as I am sure that he is too.  Having more
therapy combined with pool time and being in his stander everyday may give me my miracle. God knows we need it.  

There are some really good people out there.  Since we live in a hurricane area, we have to be prepared to be without power for many days.  Having a
generator is almost a necessity.  I mentioned it to a friend of mine and he gave us one. Daryl, I want you to know that your act of kindness touches us
deeply and knowing that you care enough for my son to make sure that he will be comfortable when power is lost is unbelievable.  You are heaven sent,
thank you, my friend.

May 10, 2006

Sorry about the down time, time has been at a premium these days.  Michael has been doing well.  He has done some voicing and has been in his stander
every day. He holds his head up pretty good while in the stander, which is an improvement.  He is about to start therapies at FWB Medical Center and will
hopefully have three sessions a week.  

I get up every day and deal with everything that is thrown my way and take it in stride; I have no choice.   However,  not a day goes by that I do not want to
hold Michael in my arms and cry; I miss him so much.  


May 4, 2006

Michael slept well through the night.  He had PT/OT yesterday.  The girls worked him out pretty good during his session. We are hoping to start therapies at
FWB Medical Center soon.  This will allow him to receive therapy 3 times a week.  We are looking forward to that.

Michael is doing very well in his stander.  I know that it is rough on him, because his legs are not used to supporting his weight, but it is good for his
circulatory,  respiratory , neurological , and muscle systems.  We will keep increasing the time that he is in the stander gradually. He has to stay in shape
for when he decides to walk again.

Take Care,
May 3, 2006

Michael was in a good mood yesterday.  He slept well through the night even though his external catheter came off.  He slept through the midnight
changing and seems well rested this morning. His eye seems to be better, so we will not drag him to the doctor today.  He did some standing in his stander
yesterday and tolerated it very well.  

Michael needs a haircut. He will get it done at Dillard's where our neighbor, Jamie, works.  She was kind enough to give him gift certificates for his hair
care.  

May 2, 2006

Michael has really grown over the past year.  When he is in his stander, he is as tall as I am. He was in a good mood yesterday with some smiles and
laughing.  He coughed a few times last night and that made for a night of light sleeping .   His eye is a little gunked up, so he will be going to the doctor this
week.  We are working on increasing his therapies and it should happen soon.

I will answer the emails soon, I promise.

Michael is  doing well these days. He is sleeping well most nights and does not appear to be too tired.  He does some laughing, makes some sounds and
frowns when I irritate him.  He's not at the point that I want him yet, but he has come a long way from being dead.Take care,
May 2006
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