Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: Children

Jul 12 2012

Akron Children’s Hospital, IV’s and Blood Work


Gavin has been examined,  had his blood taken and an IV put in place. He keeps getting these weird rashes,  all over his body that only last a few minutes and then show up somewhere else.

I had just sat down to eat lunch when Gavin crawled down the stairs.  I’m so friggin hungry because I missed breakfast. My bowl of fruit and yogurt is sitting at home,  watching the screen saver on my TV,  not being eaten by me. :-(

We are waiting for labs to come back and for Gavin‘s neurologist to either come down or call.

The hospital doesn’t seem to be very concerned about this but they also aren’t familiar with Gavin and likely don‘t treat many kids with autonomic disorders.  Gavin‘s totally not himself and something just isn’t right.

Sometimes we have to fight to have our concerns taken seriously.  They are taking great care of him, don‘t get me wrong.  They are just less worried than I feel.  Does that make sense?

Thank you all for your thoughts and prayers.

**Thanks for reading**

       -Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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May 22 2012

Check out my featured post on the Akron Children’s Hospital Blog


I’m honored and honestly really excited to be featured on the Akron Children’s Hospital blog. The post is titled: #TechTuesday: Akron Children’s App Puts Vital Health Data In Palm Of Your Hand. This post is my review of their Care4Kids app that is available on both Android and iOS devices.

It’s really cool because Akron Children’s Hospital has taken such amazing care of our boys that a chance to do something like this is just awesome for me. :-)

Check out the Akron Children’d Hospital blog. Read my review and leave some feedback. I really appreciate it :-)


#TechTuesday: Akron Children’s App Puts Vital Health Data In Palm Of Your Hand.

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May 19 2012

Published on Akron Children’s Hospital Blog


I’m really honored and incredibly excited to share with you all that Akron Children’s Hospital has asked for permission to post one of my articles on their official blog. Awhile back I had done a review of their mobile app. They somehow discovered that review and wanted to publish it on their site next Tuesday.

For those of you that aren’t familiar with Akron Children’s Hospital, they are among the very best in the entire country. People come from all over the world to have their child treated here.

As you know, our kids are frequent patrons of their fine facility. When the post goes live, next week, I share the link with all of you.

Thank you Akron Children’s Hospital for taking such amazing care of my family and literally countless others.

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Apr 29 2012

#Autism: Surviving the unexpected


This coming week is perhaps the busiest we have ever had.  When you are a special needs parent your schedule and time are not your own.  They are instead occupied by whatever your child needs.

The Lost and Tired family is no stranger to this.

Having said that,  we will be pushed this week,  much farther than we have in the past.

Beginning Monday,  Emmett and I will drop Gavin and Lizze off at Akron Children’s Hospital for a period of 48 hours.  During this timeGavin will undergo a VEEG to determine just how bad his seizures are. This is important for obvious reasons.

During this time,  I will be home with Emmett.  Elliott will be at Lizze’s parents house.  They will take Elliott to school and Emmett and I will pick him up. They will then swing by after work and pick him back up.  We will do this thru Wednesday. Lots of fun.

Emmett and I will pick Lizze and Gavin up sometime Wednesday and bring them home. This of course, assumes that nothing goes wrong and requires us to adjust our plans once again.

However,  the homecoming will be short loved because Thursday morning we will have Gavin back at Akron Children’s Hospital.  This time he will be at the geneticist and undergo a chromosomal micro array.  Basically,  that is an extremely through genetic test that looks for over 1800 different genetic disorders. Emmett just had this done a few days ago.  We won’t get the results back for a very long time.

However, if we’re lucky,  we just might find the answers we are so desperately looking for.

Friday,  we will have Gavin to the Cleveland Clinic for his Dysautonomia consult. I mentioned awhile back that Gavin‘s pediatrician thinks he might have something called Dysautonomia.  Basically,  Dysautonomia is a blanket term for the autonomic nervous system not functioning properly.

In Gavin‘s case,  he can’t regulate his body temperature very well.  That is why he is always so over dressed,  regardless of how hot it is.  That’s could also be why he doesn’t sweat.

He also can’t regulate his blood pressure very well either. When he eats,  the moment any food hits his stomach, all the blood vessels in his intestines dilate and cause his blood pressure to crash.  This is why he goes to sleep after eating.

I have no idea how long we will be there or how many times we will have to come back.

Aside from the time involved in this week,  which is extensive,  we are going to go through a crapload of gas in the van. This would be a great example of why special needs families often struggle financially.  At anytime,  we can be faced with unexpected expenses that throw our delicate balance off and causing a domino effect that takes a great deal of time to recover from.

It’s just one of those things that we’ll have to just figure out.

My goal is to physically make it to everything and survive the challenges this week is going to present.  I hope and pray that we will find some answers that we need so that we can finally end the search and begin to help Gavin.

Please keep us in your thoughts and prayers. I fear we’re gonna need them this week.

Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. :-)

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Mar 20 2012

#Autism, Seizures and EEG’s: 03/20/2012


I’m at the neurodevelopmental clinic at Akron Children’s Hospital,  with Elliott and Gavin.

Elliott is actually doing pretty good today.  He isn’t freaking out as is usually for him. However,  he’s a bit on the hyper side today.  Gavin is doing just fine,  as is the norm for him. 

Gavin’s appointment is first and Elliott’s is after. 

We will get the results of the EEG’s today and hopefully,  find a direction for us to go in,  with both of the boys. 

Please say a prayer that we get good news today.   :-)


**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum Registered & Protected

Posted from WordPress for Android

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Mar 20 2012

On the road again


Akron Children’s Hospital,  here we come.

Elliott seems to be fine this morning. Emmett on the other hand,  is fighting his fever again.

It looks like I’ll be taking the boys to Akron Children’s Hospital today and Lizze will stay with Emmett. Having Elliott present for Gavin infusion makes me nervous.

As a special needs family,  we have to be able to evolve and meet the current circumstances. This is part of what makes things so exhausting.

**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum Registered & Protected

Posted from WordPress for Android

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Mar 19 2012

#Autism, Seizures and EEG’s


You may recall that Elliott and Gavin both had EEG’s done a couple of weeks ago. If you remember that,  then you may also remember that we have been waiting for the results.

Tomorrow morning,  the wait will finally be over.

On Tuesday of this week, we will once again return Akron Children’s Hospital,  Neurological clinic. We will receive the results of the previous testing.

Both Gavin and Elliott have had suspicious episodes.  We do have epilepsy in the family and so we wanted to make sure everything was okay.  It’s been a very long couple of weeks,  especially when waiting for answers.

My hope is that we will walk away from this appointment,  knowing more about what’s going on than we knew previously. 
Right now, we don’t know to much,  so the bar isn’t set very high…….

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