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

Tag Archive: Akron Children’s Hospital

Jun 17 2013

Being investigated by Child Protective Services: Big Update 06/17/2013

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CPS

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June 17, 2013


I just got off the phone with the social worker in charge of our investigation.  She received very detailed information from Dr. Patti.  This information was very, very helpful in verifying our story that we do in fact take our kids to the doctors. 

Dr. Patti said that she has no concerns about out Lizze, myself or the boys, relative to this investigation.

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The social worker went on to state that once the records are received from the Cleveland Clinic and Akron Children’s Hospital, this case will be closed. 

OMG….. This is such good news. 

I asked how we could protect ourselves from future spite calls and she suggested speaking with an attorney.

We’ve actually been contacted by some advocacy groups that have offered to help but at this point, I think we would be better served by moving on with our lives. If this person decides to provoke us further with a future spite call to CPS, than that will change the game and Lizze and I will respond accordingly.

At this point, we just want to put this all behind us and move forward. 

It will still be awhile before we officially have this case closed but it definitely looks like that’s what’s going to happen.  While I’m not surprised, I’m relieved that the system worked and we didn’t slip through the cracks and have this turn really ugly.


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Jun 16 2013

@AkronChildrens Hospital talks about playground safety

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Akron Children's Hospital, Educational Video

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June 16, 2013


As we find ourselves in the middle of perfect playground weather, it’s important to take precautions that help to ensure the safety of your little one.

Gia Ramsey, injury prevention coordinator for safe kids and Akron Children’s Hospital Mahoning Valley, talks about playground safety. This is another great video and one that will help provide you with the tools to keep your child safe on the playground.

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Jun 06 2013

#Autism 101

Categories:

Autism Awareness

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June 6, 2013


Akron Children’s Hospital pointed out this interesting infographic to me this morning. It basically summarizes the Autism and it’s impact in a unique way. While I question the whole 80% divorce rate (thought that had been debunked), this infographic provides very useful information and I want to thank Akron Children’s Hospital for sharing it with me so I can share it with you. :-)

Autism 101: What We Know Today
Image source: www.nursedegree.net

 

I would love to hear your thoughts and comments on this. Please have at it down below in the comments.

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Jun 05 2013

Thank you @AkronChildrens for another successful IVIG infusion

Categories:

Akron Children's Hospital, Gavin, IVIG Infusion

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June 5, 2013


As I sit here in my car, waiting for Elliott to be dismissed from school, Gavin is at home resting after a successful IVIG infusion.

Lizze and Gavin arrived home a little bit before 2pm this afternoon. 

Apparently Gavin did really, really well.  Not only did he tolerate the physical IVIG infusion, he also behaved himself as well.  :-)

In fact, he’s doing so well, he may actually get to finish out the last week of school. 

Originally, we were going to keep him home because the last infusion took a lot out of him and we didn’t want to push him too hard.  However, he seems to be doing much better this time, who knows.  :-)

I just wanted to say thank you to Akron Children’s Hospital and their outpatient infusion lab for once again taking such good care of my son.

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Jun 02 2013

Another IVIG infusion is on the horizon

Categories:

Akron Children's Hospital, IVIG Infusion

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June 2, 2013


This week Gavin will once again make his monthly return trip to Akron Children’s Hospital for his IVIG infusion. 

Like last month’s, this will likely also bring with it a bump in the dosage because his levels are not were they need to be.  I suspect that his infusion will also be his last day of school as well. 

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I can’t remember the date, right of the top of my head but I believe it’s Tuesday or Wednesday.  I have to look at the calender to be sure. 

The boys last day of school is the 7th.

As Gavin’s body is struggling with the IVIG bumps, he will likely require at least one or two days off to recover. We’ll have to see how he does.

Hopefully, this will be a relatively uneventful infusion and we can begin summer vacation on a healthy note. 

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. ;-)


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To reach me via email, please Contact Me


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May 25 2013

What the hell happened yesterday?

Categories:

Akron Children's Hospital, Gavin, Operation Hope

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May 25, 2013


While it’s a bit overdue, I wanted to share what happened when we met with Dr. Clark yesterday at Akron Children’s Hospital.

Basically, our purpose is going was to find out if the fact that Gavin’s brain is improperly controlling his heart, has a negative impact on his heart itself. 

Does that make sense?

We have been worried by his rapid heartrate and didn’t really know whether this was bad for his actual heart or not. 

So what did we find out?

Put simply, Gavin’s heart is physiologically fine and while the numbers are high, they aren’t adversely impacting his heart health.  Basically, as far as his physical hearts concerned, we can ignore the numbers, at least for now.

His heart rate is more of an indication as to his current autonomic status and not the actual condition of his heart.

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That was basically, the long and short of it. 

I mean, there were tons of things in between but that’s the meat and potatoes of the conversation. 

We learned that over the 24 hour period of time that Gavin  was wearing the Holter Monitor, his average heart rate was about 107/bpm.  He explained that the reason that’s lower than what we see is because takes into account when he sleeps. 

During the day we see his heart rate in the 120′s – 130′s very consistently. 

However, when you factor in what his heart rate is while he’s sleeping, the average is only 107/bpm and nothing to worry about.  :-)

We talked about (what we already knew) how his heart issues are a symptom of something else (in this case autonomic dysfunction). Essentially, the heart is doing what it’s told to do and that’s all. 

Dr.  Clark didn’t want to make any changes because of how complex Gavin is.  He is however, sending a letter to the Cleveland Clinic, advising them of his findings and providing some heart related things to consider if they feel it’s necessary.  Since this is truly a neurological problem, it really falls outside of his area of expertise and he deferred Dr. Moodley at the Cleveland Clinic.

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Having said that, Dr. Clark was a huge, huge help to us because he was able to provide us with something we haven’t had in a long time, peace of mind.

He will always be there if we need him again and I believe we are going to have regular followups with cardiology to track things very carefully to make sure that Gavin’s heart health stays good. 

While we still have to watch his numbers as they are an indication of his current autonomic status, we no longer have to worry about whether or not his physical heart is being damaged in the process, at least for now.

One less thing to worry about, now that’s a victory.  :-)


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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May 23 2013

My awesome lunch with @AkronChildrens

Categories:

Akron Children's Hospital, My thoughts

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May 23, 2013


It’s about 2:30 pm as I’m writing this and I’m sitting here waiting for the boys to get out of school so I can bring them home. I’m so excited to hear about their experience today at the baseball game. 

I’m so incredibly happy that they were able to go. 

Earlier I mentioned that I had a lunch meeting this afternoon in Akron.  That lunch meeting was with an amazing group of people from Akron Children’s Hospital.  It was really cool because I’ve worked with them before but had never met them in person and today changed that. 

In attendance was myself, Andrea (Director of Corporate Communications), Laurie and Jim (Social media and analytics, respectively). 

Like everyone else we’ve ever come into contact with while at Akron Children’s Hospital, they are so incredibly nice. 

Anyway, I’m super excited to share with you that I will be writing for the Akron Children’s Hospital blog.  Lost and Tired and Akron Children’s have a great deal in common, in the sense that we both seek to help educate parents and provide information that can help families going through challenging situations with their precious children.

To me, this is a huge, huge honor because I hold Akron Children’s Hospital in very, very high regard. 

I mentioned today at lunch that it was really interesting because all of my life, I’ve heard all these amazing stories about Akron Children’s Hospital but until Gavin entered my life, I had never been there before. 

Now I joke that it’s our home away from home.

Our experience with Akron Children’s has always lived up to and even surpassed all the stories I’ve heard growing up.

Meeting Andrea, Laurie and Jim in real life was really a great experience and I’m so grateful for the opportunity.  I look forward to working together and hopefully being able to begin giving back to the Hospital that has given so much to my family.  :-)

Thank you so much for the good conversation, great company and delicious lunch.  :-)

While that was great, there was one thing that made this afternoon even better for me and I’m sure my new friends will understand. 

I arrived about 45 minutes early for lunch and parked in the parking deck that overlooked the baseball game that Elliott, Gavin and my Dad were at. 

I spent some time watching the game with them. It was really nice to feel that connection and share the experience with my kids, even from a distance.  I even got some pictures of the game while I was standing there.  I figured I could share them here and I know that Emmett would like to see where his big brothers were today. 

So far, this has been a really amazing day and that’s not something I can often say.  :-)

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This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-)

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-)

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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Permanent link to this article: http://lostandtired.com/2013/05/23/my-awesome-lunch-with-akronchildrens/

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