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Tag Archive: appointment

May 20 2013

@AkronChildrens Hospital: Our home away from home

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Akron Children’s Hospital

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May 20, 2013

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This week, I’ll be making 4 trips to Akron Children’s Hospital.  It’s only about a 30 minute drive on most days but I’ll be there 4 out of the 5 days this week. 

Monday, Gavin gets fitted for his Holter Monitor.

The actual appointment shouldn’t take very long because they are just attaching it to him.  However, he’ll be home from school….all day. 

He has to wear this for at least 24 hours and that will give his cardiovascular team a better idea of what is going on with his heart. 

When the monitoring is completed, most likely on Tuesday, I’ll drive the device back up to the heart center so that the results can be read before our appointment on Friday. This appointment will be to discuss what’s going on, bring them up to speed and find out the impact that this autonomic dysfunction is having on his heart, if any at all.

The most likely thing to come from this is additional heart meds or adjustments to the ones he’s already on. 

The reality is that his brain in the problem, not his heart.  We know that they can’t fix this.  However, we are trying to limit any collateral damage to his heart if alt all possible. 

The forth trip…….

We’ll, I can’t talk about that right now.  You’ll have to wait until Thursday evening to hear all about that.  It’s nothing bad, so please don’t worry. 


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

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May 02 2013

Sure, the timings bad but when is it ever good?

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Cleveland Clinic, Lizze

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May 2, 2013

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We were supposed to return to the Cleveland Clinic in the morning to follow up with the whole slow stomach thing for Lizze.  However, we’ve had a last minute change of plans. 

Lizze wants to reschedule.

Why? Because of me…

I’m still sick and have been pushing myself way more than I probably should have been. 

The drive to Akron Children’s for Elliott’s appointment yesterday, killed me for the rest of the day.  All I did was drive and meet with his doctor. Apparently that’s all it took to get my body to hate me. 

I’m trying to talk her into going tomorrow because it’s an important appointment. 

She’s suffering right now and we now know that part of the problem is there’s something wrong with her stomach. 

This appointment would hopefully give us our options and possible treatment to improve her quality of life.  I think I would be fine to go and I hate the fact that me being sick is interfering with Lizze getting some much needed relief. 

We probably wouldn’t be gone for very long.  Most of the time would be spent driving. 

In my opinion, the pros far outweigh the cons on this one. 

I really appreciate her concern but I’m a big boy and it’s my job to make sure that everyone gets the care they need.  It’s important to me that we see this through and not skip today’s appointment. 

Sure, the timings bad but honestly, when is it ever a good time?

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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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Apr 25 2013

Hello @ClevelandClinic, we’re here for a swallow study

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Cleveland Clinic, Lizze

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April 25, 2013

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We have finally arrived at our second to last appointment for this week.  Very early in the morning we will get up and make our way to the Cleveland Clinic’s main campus.

This particular appointment is Lizze’s once again and is with radiology.  She will be having a swallow study done to find the reason why she so often chokes while eating. 

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They explained that her esophagus is really pretty narrow and likely the reason for her choking so often. 
They will be doing a barium swallow study to observe the process and better understand if there is a biomechanical problem taking place when she tries to swallow.

On the way home, we have to devert to the Cleveland Clinic’s Brunswick location to pick up Lizze’s special knee brace, before finding our way back home.

After these two appointments, we will finally be done for the week.   Not a moment to on soon because I’m so incredibly tired of driving and I’m completely exhausted. Lizze is having a rough time keeping up with this week.  She’s burnt out right  now and needs her rest.


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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Apr 18 2013

Thank you @AkronChildrens Hospital for the great care we received

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Akron Children’s Hospital, Emmett John

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April 18, 2013

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I promised to update you all on how Emmett’s ophthalmology appointment with Dr. Lawhon went yesterday. 

If I could choose only one word to describe our experience yesterday..hmm.

Awesome.  I would say Awesome.

Emmett’s glasses have given him 20/30 vision. There’s no need for an eyepatch this time but we’ll reevaluate in 3 months.  This is a huge improvement from his natural 20/200 vision without his glasses.

Emmett had a great appointment, at least after the brief wait in the waiting room.

He loves Dr.  Lawhon and enjoyed the eye chart and the cool Mickey Mouse, spinning laser light thing. Emmett was clammering to get his hands on that toy for awhile.  As far as Emmett was concerned, it was worth the wait. 

This appointment was a an overwhelming success. 

The only downside to this was I received the phone call about Gavin’s immune system as we were walking out of the office and heading to the car.  :-(

With that said, I would like to thank Dr. Lawhon and Akron Children’s Hospital for once again taking care of my family.  :-)

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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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Dec 12 2012

Tuesday Therapy: Concerns about Elliott

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Elliott

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December 12, 2012

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Lizze and I spent much of our appointment with Dr. Patti discussing our concerns about Elliott and what he’s been going through.

I’m really worried about him and I don‘t know how to help him. 

All I can do at this point is just reinforce with him that we are here if he needs us and that Mommy and Daddy will take care of him.  It doesn’t seem to help much but at least he knows we are there for him.

We think that most of his struggles stem from what is going on with Gavin and now his whole life has changed because of his new food allergies.

In his eyes, he’s losing everything. 

I can’t even imagine being 6 years old and feeling like that. 

My heat breaks for him.  :-(

He’s my baby and he’s so miserable all the time. At least he had fun with Emmett while at Dr. Patti’s.

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Dec 04 2012

#Autism, #Anxiety and Tenex: Pulling the plug

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ADHD, Anxiety, Elliott, Medication, Parenting

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December 4, 2012

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So we had our appointment with Dr.  Reynolds yesterday.  The main discussion centered around Elliott and how’s he’s doing on the anti-anxiety medication Tenex.

We went over all of our concerns and ultimately decided, with Dr.  Reynolds, to pull the plug on the Tenex. 

He will have to be weened off over the next 10 days.

We are also going to play around with his ADHD medication and see if it’s really benefiting him at all. 

When I say playing around, I just mean withholding it for a few days and see how he does.  This medication is very fast acting and can be started or stopped at any point. 

Hopefully, we can balance Elliott out and help him to get some traction once again. 

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Nov 27 2012

Huge change of plans

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Cleveland Clinic, Lizze

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November 27, 2012

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I got a phone call this morning from the Cleveland Clinic. They we’re calling to cancle Lizze‘s appointment at the headache clinic.  She has been waiting for over 3 months for this appointment.

We could reschedule for sometime next year or we could be there at noon today.

We went into a stress fill frenzy and scrambled to make arrangements for the boys.

Lizze‘s mom left work and picked up the boys because my parents have the flu staying at their house right now. 

We took off for Cleveland like a bat outta hell and are now waiting to be seen. 

Needless to so say that this completely throws the entire week off now.  Having said that, Lizze will be seen a few days early. That’s a big positive.

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