The aftermath

Today has been an overall success but it has come at a price. Lizze is not doing very well and I am completely drained. Today has taken both a physical and emotional toll. Lizze went to bed about 6pm and has been out since. I, on the other hand, am so tired that I can't fall asleep. Kind of ironic I suppose. Tomorrow should be relatively uneventful.....at least I hope it will be. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. 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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Gavin’s 1st infusion: Success

Gavin's 1st infusion was completed in about 4 hours. It took much longer then we thought but Gavin did well. So far his body seems to be tolerating the procedure without side effect. He may get a bad headache, back pain and nausea. However, so far he's just tired. So we'll just count our blessings. Akron Children's Hospital was amazing today. They are truly among the best of the best. They showed a tremendous amount of compassion and understanding throughout the entire ordeal. We also spoke with the doctor as well. She said that at this point we will do the infusions for least the next year. At that point we'll stop for 3 months and see what happens. More likely then not Gavin will need these infusions indefinitely. We…

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Gavin’s 1st infusion: The IV

UPDATE: Apparently the IV drip takes about 4 hours. We were originally told 1 hour but we started about a little while ago and won't be done till 5pm-ish. The IV has just been placed. Gavin did pretty well. He was really upset even though he didn't feel anything. I think the idea was upsetting enough. He didn't scream or hit anyone, so that is a big positive. The infusion has started and should last about an hour. He is currently distracted, playing Lego Harry Potter on the PS3. We Jane to watch for side effects. This can make him nauseous as well as cause a bad headache. He may also run a fever for a day or so. Hopefully he tolerates everything well and start feeling better soon. Elliott…

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Gavin’s 1st infusion: The Room

We are back in his room now. Gavin is drinking rootbeer and eating chips while playing PS3.  He received a numbing cream on the pending IV site. He also received a couple other meds as well. They will put the IV in place in about 30 minutes. I'm not sure how well the IV will go because he started kind of freaking out when they were putting on the numbing medication. Hopefully he can keep it together so that does not become a traumatic experience. Something to note is that everyone has a private room which is far and away less stressful for everyone. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version…

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Gavin’s 1st infusion

We have arrived at the oncology/hematology infusion lab at Akron Children's Hospital. The waiting room is pretty amazing. Gavin is nervous but pretty relaxed, all things considered. The infusion is scheduled to begin at 12:30 pm. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. 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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Antibody infusions begin today

In less than 3 hours Gavin will begin his first antibody infusion. I hope and pray that this will help address at least some of the problems. We can't go much further until we get his physical health stabilized. So this is a big step forward for us. I'm told that after the infusion he can still go to school and do all the things he normally would so long as he continues with the infusion therapy. So here's to hoping that this will help Gavin to feel better and all of us to move forward. - Lost and Tired Post by Wordpress for Android via Nexus S 4G without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. Please Vote for Lost and Tired…

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Gavin’s health crisis: Where we stand 8/8/2011

Gavin's Health Crisis: Where we stand? I have been spending some time today trying to play catch up on the blog. Things have been so crazy around here lately that I have not kept up as well as I would like to. The health issues going on with Gavin have been pretty much all consuming lately. However, I still feel it's important to share our story because it not only helps me to sort of work things out but it also puts valuable information out there. I truly believe the best way to raise awareness about anything is by sharing your personal experience and putting a face with a particular situation. In our case we are not only dealing with the challenges associated with Autism but also very serious health situations. While…

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Gavin’s health crisis: Immunology 8/8/2011

We learned last week that Gavin has a severely compromised immune system. His IgM and IgG antibodies are less than half of what they are supposed to be. He is currently being treated for pneumonia and chronic sinusitis. They also believe there is an asthma component as well so he has started with an inhaler this past weekend. It actually seems to help. Gavin says it's easier to breathe now so that's good. We didn't know he was having trouble before but I'm not sure he realized that either, if that makes any sense. At this point we don't know for sure what's causing this but we do know that he now needs monthly antibody infusions. I believe it's called IV IgG and basically, they take donor antibodies and infuse…

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