Antibody Infusion #4: The Prep

When it's time to go back to the room where the infusions will take place,  there are a few things that have to be done before we get started. This preparation takes about an hour or so.  It involves numbing the area where the IV will be placed and meditating him so that he doesn't,  hopefully,  get sick from receiving the donor antibodies. Once all this is done,  we just have to wait until it's time for the infusion to begin.  The wait time is broken up by the PS2 for Gavin,  and the typing of this blog post for me. :-) - Lost and Tired Posted by Wordpress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing…

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Antibody Infusion #4: The IVIG Infusion

The IV has been placed.  Also,  we arranged for Akron Children's Hospital to draw the blood for Gavin's weekly blood draw.  This way he doesn't need to traumatized a second time today. The IVIG Infusion will take a few hours to finish.  Gavin will be having pancakes and sausage for lunch.  I, one the other hand,  am fasting for my cholesterol check I have to have done on the way home today.  Lizze is home sick with Mr. Emmett John today.  I'm so tired and I'm getting pretty darn hungry.  I'm anxious to see how far my cholesterol has come down.  While I haven't been walking,  I have been eating better.  My last check had me down to about 160 from 210. :-) - Lost and Tired Posted by Wordpress…

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Antibody Infusion #4: The Arrival

We have arrived at Akron Children's Hospital a little early.  We had to arrive early because we were out of supplies to prepare him at home. I just signed him in and we are waiting..... - Lost and Tired Posted by Wordpress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-) Please Vote for Lost and Tired (just click the link) and help me spread Autism Awareness. Everyone can Vote once a day :)

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When routine is disrupted

Elliott's dvd player is broken.  It died a few days ago. Normal it wouldn't be a big deal,  except that Elliott had his routine and now it's disrupted.  I don't think that he actually watched it as much as listened to it while he was falling asleep.  Now he simpy can't sleep in his bedroom now.  That means we are once again camped out in the living room until I replace it,  or figure something else out.  I honestly don't mind because our mattress is shot and with my back issues,  the couch is better for me. I keep saying that I want to get the boys one of those cheap,  wireless, Netflix streaming boxes but just haven't yet.  Maybe for Christmas or with tax return... They just connect to…

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Antibody Infusion #4 in the morning

Gavin will receive his 4th antibody infusion in the morning.  We will be at Akron Children's Hospital for most of the day. So far these have gone pretty well.  His body is tolerating the infusions without much side effect.  As a precaution,  we do keep Gavin home from school the following day.  This process is exhausting for him and we give him the following day to recover. You can follow along with the procedure in the morning.  I document everything and will keep the blog updated,  as I have 4 or 5 hours to kill.  :-) I wish Gavin didn't need these but I glad they are available to address the issue. - Lost and Tired Posted by Wordpress for Android via Samsungs Epic Touch 4G (provided to me at…

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Emmett started Physical Therapy today

Emmett began Physical Therapy (PT)  this afternoon.  We have been waiting for this for a while now.  He basically had almost 2 hours of therapy today. He began with OT.  Then he went to speech and finally PT.  He did really well and is throughly exhausted.  You would think that the amount of hell he raises at home would be reduced in proportion to his level of exhaustion but sadly that is not the case.  He is currently raising hell with his brothers without missing a beat. :-) - Lost and Tired Posted by Wordpress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling…

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Cat Poop for Breakfast

One of the things I stress to parents is that perspective is an amazing thing.  Even the slightest shift in perspective can yield a dramatically different outlook. Cat Poop for Breakfast We took Emmett to Dennys this morning for breakfast.  We rarely get to do this but today he was asking for sausage patties,  so we thought we would get him out for a little bit after taking the boys to school. Emmett is experiencing a very independent streak at the moment. So after we were seated,  he insisted on ordering for himself. I ordered a bowl of oatmeal and Lizze ordered some eggs and toast. Then it happened, and this is how it went down: Emmett:  I order Daddy: Emmett tell her what you would like to have. Waitress:…

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Frustrated Much?

I'm absolutely frustrated with Gavin.  I'm very aware that majority of my frustrations revolve around behaviors that are outside of Gavin’s control. However,  just because they aren't his fault doesn't mean they aren't frustrating and exhausting. I'm making the conscious decision to be honest about this because if I'm not,  it won't do me or anyone else,  any good.  I don't want to hide my feelings because that would be denying the truth.  I think that my best bet for long term survival is to purge from time to time, in order to help offset the level of stress I'm constantly under. As I already said, Gavin is driving me crazy.  He's not listening and repeating the same inappropriate behavior,  over and over again.  I honestly,  don't even know why…

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