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

Tag Archive: Cleveland

Apr 26 2013

All the way to Cleveland for a friggin knee brace

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We arrived at our second and final appointment of the day and I’m waiting with Emmett, for Lizze to come out with her fancy new knee brace. We are at the Cleveland Clinics Brunswick location now.

The special brace is supposed to help with her knee pain and makes everything stayed aligned. It’s worth the drive to get this for her. It’s also sorta on the way home.

Emmett’s done pretty well, especially considering we’ve basically been driving since 7am this morning. 

The last 20 minutes though have been very challenging because he’s finally had enough and melted down.  He screamed and screamed for almost 20 minutes straight. 

I can normally handle the screaming but while I’m driving on the freeway, it’s very distracting.

Thankfully, he’s gotten it out of his system and is feeling better now. 

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Apr 24 2013

WTF…… Seriously? Are you friggin kidding me?

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OMG, today have been a trying day. 

As you know, Lizze had her appointment with Orthopedics at the Cleveland Clinic this afternoon.  She’s been having problems with her knees for many years, steaming from a major injury during years as a gymnast. 

We are in desperate need of a break from bad news. 

It’s kinda like bad news and good news are divorced parents that can’t seem to ever come to terms with anything.  They completely ignore the visitation schedule that states that we want to see the good news along with the bad.

Unfortunately, that’s not what happens in our lives. 

So here’s what went down today. I swear I couldn’t make this shit up if I tried. :-(

This morning, Lizze got another email from her new OB/GYN at Cleveland, informing her that her vitamin D levels are dangerously low.  She’s at a 15 and from what I’ve read, a healthy level is anywhere from 30-110. She has to go back on prescription strength vitamin D. 

While we were on the way to Lizze’s appointment, I got an email from babble.com telling me that my Facebook page is in the top 30 of Autism related Facebook pages.  I was pretty excited as I’ve been trying really hard to improve the Lost and Tired fan page.

I was feeling pretty good as we arrived at the Cleveland Clinic today.
The whole vitamin D thing with Lizze can be corrected and I just won an award. 

Before I can walk in the door of the hospital, I get another email from babble.com, retracting the previous email as it was a mistake. Man,  that sucks but life moves on and today was about Lizze and not me. 

Lizze had her xrays done and we got back to see her new doctor quickly.  The doctor said that the film looked pretty good and only showed very minor signs of arthritis.  Hell yeah!

Finally, some good news. 

I was totally afraid that she was going to need surgery. She was diagnosed with something called J band syndrome. While this is very painful, it can be worked on in physical therapy. 

Did I say hell yeah already?

We arrive to my parents house to pick up the boys and head home.  The moment Emmett gets into the car and for about the next 45 minutes,  he literally screamed and screamed and screamed.  He did eventually stop but only to become super hyper and has been bouncing off of everything in sight.  :-(

After we finished dinner and had sorta come down from the almost hour of screaming, I get a phone call……

It’s Lizze’s new orthopedist. She is personally calling because after reviewing her xrays a second time, she found something wrong with the tip of her femur.  It’s something to do with a divit and cartilage honestly, as soon as I realized it was bad news, my brain just shut down.

In 5 minutes we went from everything is okay to needing an MRI and possible surgery…. 

Fucking shit……….. Goddammit… Son of a bitch.


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.



Permanent link to this article: http://lostandtired.com/2013/04/24/wtf-seriously-are-you-friggin-kidding-me/

Apr 22 2013

Thou dost protest too much

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I’m going to say this one more time, I HATE the new wordpress app for android.  This is now the 3rd attempt to update you all as to what happened at Lizze’s OB/GYN appointment at the Cleveland Clinic.

In a nutshell, Lizze loves her new doctor.

The new doctor believes that Lizze is pre-menopausal  but there is also a chance it’s PMDD. A ton of bloodwork was ordered and then subsequently drawn. 

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Lizze goes back in 4 weeks and we’ll have a better idea of what’s going on. 

Here’s where things got ugly. 

Lizze’s previous OB/GYN, the one that delivered both boys and preformed her two surgeries, including her hysterectomy, is refusing to turn over her records.

I never shared this but Lizze went the other day to pick up her records from her old doctor so she could bring them with us today. Her records are literally 3+ inches thick and they are charging us $1.50/page. We can’t afford that so Lizze had to walk away. 

The Cleveland Clinic told us not to worry about it because they will go after the relavent records, all we had to do was sign a release.

While Lizze was standing there, the staff called and spoke to her old doctors office.  They flat out refused to turn over her records.  Their reason is that we still owe them about $700 from her medically necessary hysterectomy that insurance refused to cover.

We had been sent to collections and honestly, I’ve fallen behind. 

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It’s my fault and I should have figured something out  but it’s not like I have nothing on my plate. 

They also divulged that information to the nurse at the Cleveland Clinic and said that u til we take care of the balance, they will never release the records. 

On top of that, they said that they’re upset because they have invest a great deal of time and money into Lizze and she just left the practice for another doctor. 

The truth is that we had to leave because until we had the balance paid off completely, they refused to treat her.  We couldn’t pay the balance off at once and Lizze has been suffering for 2 years and I finally convinced her to move to the Cleveland Clinic. 

The staff at Cleveland Clinic’s Mayfield Heights location were completely shocked by the aggressive tone that her old doctors office has taken. 

All they wanted were her last lab results and the records from her hysterectomy. That was it. Just a few pages.  Still they refused.

Basically, her new doctor is a bit concerned about why they are protesting so much. 

Part of the bloodwork is to make sure that her ovaries are still present.  They were NOT supposed to be removed and there’s no way to know if they are still present without lab work and an ultrasound.  This would be one explanation for why she’s been having these issues since her hysterectomy. 

We absolutely loved her old OB/GYN.  He may know nothing about this and it may just be his office manager.

Just so I’m perfectly clear, no one is accusing anyone of doing anything wrong.  With that said, have you heard the phrase,  thou dost protest too much. They are making it appear that they have something to hide. 
Who knows? All we care about is helping her to feel better. 

I know I dropped the ball and trust me, the guilt weighs heavy, especially now.  However, I’m not sure it even legal to refuse to provide records especially if releases have been signed and we’re dealing g with serious health issues.  


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.

Permanent link to this article: http://lostandtired.com/2013/04/22/thou-dost-protest-too-much/

Apr 22 2013

Our search for answers at the @ClevelandClinic

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Today is the first of many appointments for this week.  In many ways, this is likely the most important one of the week as well.

Shortly we will be heading to the Cleveland Clinic. 

Lizze will be visiting a new OB/GYN to find out for sure if she’s entering early menopause and if not, what’s causing all the identical symptoms.

The Cleveland Clinic has one of the top OB/GYN clinics in the country, so I’m confident that we can finally get a handle on what’s going on. If she is indeed going through early menopause (which is something prominent in her family), that could explain much of what she’s been suffering from. 

I realize it’s probably bad luck but to say this now but I think we may finally get some long sought after answers.

Please keep Lizze in your thoughts today.  She’s really   nervous but anxious for an end to all the hot flashes.


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.

Permanent link to this article: http://lostandtired.com/2013/04/22/our-search-for-answers-at-the-clevelandclinic/

Mar 14 2013

Returning to the @ClevelandClinic today

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We have to be in Cleveland again in the morning because Lizze has another appointment. This time it’s the gastrointerologist we will being seeing.  Her current gastrointerologist retired and so she moved to Cleveland in order to improve the quality of her health care.

I really dislike the drive but I’ll do whatever I have to for my family. 

Hopefully, Lizze will get he reflux meds and feel better.  :-)


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.



Permanent link to this article: http://lostandtired.com/2013/03/14/returning-to-the-clevelandclinic-today/

Dec 18 2012

Autonomic Crisis: Heading to @AkronChildrens Hospital

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I spoke with Dr.  Moodley’s office at the Cleveland Clinic.  We were originally going to be taking him to the ER at Cleveland. However, as we are getting ready to go, I received a call back instructing me to take him to Akron Children’s Hospital instead.

I don‘t know for sure why they wanted this. However, it’s likely they either don‘t want him to travel that far or there isn‘t really anything we can do at Cleveland that they can’t do at Akron.

Either way, this day has very quickly gone right down the shitter. 

I’m very close to losing what’s left of my mind and just beating my head into the wall until it all goes away. 

Hopefully, Gavin will be stabilized and we can take him home and make a plan for going forward.

Please keep Gavin in you thoughts and prayers. 

Permanent link to this article: http://lostandtired.com/2012/12/18/autonomic-crisis-heading-to-akronchildrens-hospital/

Dec 18 2012

Autonomic Crisis: Gavin seems to be crashing

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We just got home from Gavin‘s martial arts promotion.  Gavin did really well and I will have pictures up when I can. 

Right now, we have a problem.  It looks like Gavin is in another autonomic crisis.  After promotion we got spend some time with him in his classroom.  He didn’t look good to me and I asked him to check his heart rate.  He did and it was 50 bpm, standing up. 

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That would explain why he was so shaky and pale.

I had him sit down and take it again.  This time his heart rate shot all the way back up to 138 bpm. That’s almost a 100 bpm difference.

That’s not good at all. 

Your body is supposed to compensate when you transition between sitting and standing.  There should be almost no difference or change in your heart rate or blood pressure.

Gavin‘s body is not compensating at all.  Truth be told, I’m really worried. 

Despite having moved him out of our house for behavioral reasons, we love him the same.  Nothing will change that.

I’ve placed a call to Dr.  Moodley’s office at the Cleveland Clinic.  He is Gavin‘s autonomic specialist and the goto person for this type of thing.  We are waiting to hear back and find out what he wants us to do. 

We aren’t sure if we should take him all the way to Cleveland or bypass Cleveland and go to Akron Children’s Hospital, as it’s much closer.

At the moment, Gavin is still at school.  His teachers are keeping a close eye on him and Gavin insists that he’s okay.  We figured there’s nothing we can do at home that they can’t do at school so we would wait to hear back from the doctor before deciding, what if anything we should do.

I’m at a point to where I want him admitted until they figure out what the hell is going on with him.
His body can’t sustain a heart rate of 135+ bpm indefinitely.  At some point he will crash and we want to figure this out before that happens. 

Please keep him in your thoughts and prayers. I will keep you all posted, as always.

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Permanent link to this article: http://lostandtired.com/2012/12/18/autonomic-crisis-gavin-seems-to-be-crashing/

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