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

Tag Archive: appointments

Apr 29 2013

A week in the life of the Lost and Tired family

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This past week has been a grueling one, for all of us in the Lost and Tired family.  We had more appointments than I care to remember and more than our fair share of bad news.

This past week has brought us long sought after information. 

I’ve also discovered that sometimes, you don’t like the very information you’ve been looking for once you find it. 

This is a brief rundown of the happenings from this past week:

1) Lizze is confirmed to be in menopause (at age 32)  and there may not be any treatment due to her history of blood clots.

2) The reason for early menopause may or may not be because of a possible mistake made during her hysterectomy 2 years ago.

3) Lizze’s previous OB/GYN is refusing to turn over records to the Cleveland Clinic. Why? Why indeed….

4) Lizze’s Left knee may require surgery, pending an upcoming MRI.

5) Lizze has a slow stomach.  Basically, her stomach isn’t emptying, which is causing her many problems, including nausea and choking on her food.

6) Emmett ended up needing a root canal and metal cap to repair a broken tooth.

7) Elliott’s hair appears to be falling out. 

These are the main bullet points from the last few days.  As you can see, it’s a big ‘ol bucket of bad news.

For the most part, we’ve taken it in stride.  The week has taken its toll on me personally and I’ve taken ill.  Nothing serious but it’s enough to keep me down.

We’ve got more appointments this week to both follow up and continue the search for answers that will help to provide relief to Lizze.  Unfortunately, right now we are in a really bad position financially and will have to make some tough decisions. 

The truth of the matter is that things are happening so fast that I can’t keep up with the increasing demand caused by our surplus of health issues. 

When you can’t afford to make the out of town trips needed to meet with your loved ones doctors and specialists, you have to decide which ones can be put on hold. 

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Thankfully, this week doesn’t bring with it too many appointments.

We have to return to the Cleveland Clinic at the very least one time.  Akron Children’s Hospital is calling our name twice also.

Not sure what we are going to do or how we are going to decide which appointments to keep and which to push off. The problem is that each one of these appointments are extremely important for the health and well being of the person involved. 

The only appointment that is expendable is Gavin’s dentist appointment. 

The rest are of significant importance.  Gavin’s is just a cleaning and can be put off. 

As extreme as this may seem, it’s just another week in the life of the Lost and Tired family. We have to somehow pick up and move forward the very best we can.

One of my plans for this week is to try and find help for my family. We haven’t had much luck in the whole finding help department but whatever I manage to find, I will share with the rest of the class. Perhaps it can be of some help to another family out there.


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. ;-)

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



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Apr 16 2013

The onslaught of appointments

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Tomorrow morning begins an onslaught of appointments that will carry us through the end of the month.  At this point, the tally is 16. We have 16 appointments over the next 14 days.

These appointments will included Akron Children’s Hospital, the Cleveland Clinic,  the dentist, the eye doctor and a few more.

I’m not sure how all of this is going to work out.

Right now, Elliott is getting another nasty sinus infection and that’s going make tomorrow a bit more challenging.

Most of these appointments are really, really important and can’t be rescheduled…….


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/2013/04/16/the-onslaught-of-appointments/

Jul 30 2012

Dear Monday, please be kind to us

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This week is going to be crazy busy.  So far,  we have about a dozen appointments this week. That’s not including any pending appointments or ones that will come up at the last minute.

We are hoping to see the mitochondrial doctor and are waiting on the call.  We also have to make a return trip to Cleveland as soon as we get the call.

It’s honestly a bit daunting with just appointments that I know are there and frightening to think about any surprises that may pop up at the last minute.

I’m really hoping that Monday is kind to us and for that matter,  all of you as well.

**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.

Permanent link to this article: http://lostandtired.com/2012/07/30/dear-monday-please-be-kind-to-us/

Feb 23 2012

Changing of plans is no surprise

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Tomorrow was supposed to be spent at Akron Children’s Hospital.  Elliott and Gavin both had back to back appointments with the neurologist for possible seizures.

However,  Elliott is still sick and the EEG’S are next week.  We decided rather than just cancel Elliott’s appointment that we would cancel both. We rescheduled them for after the EEG’S are done.

While it was done do to Elliott being sick,  it actually makes more sense to do it this way. I guess the neurologists office preferred it this way as well. 

Now,  I need to figure out how to contain Elliott in his room and in bed tomorrow so he actually rests and gets better.

One thing I have learned as a special needs parent is that you have to be flexible in the scheduling department. Things change on an almost hourly basis and these changes can create the need to reschedule appointments. 

You just have to roll with the punches or get knocked out I guess.

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Permanent link to this article: http://lostandtired.com/2012/02/23/changing-of-plans-is-no-surprise/

Feb 21 2012

Four more….

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In about 2 hours the appointments for the day begin. 

Lizze will get things started for us this morning. Shortly after that,  Emmett will get his turn with OT and Speech this afternoon.

Tonight Emmett has therapy with Dr.  Pattie.

Thankfully,  that should be it for the day. Tomorrow will bring with it a return to Akron Children’s Hospital,  only this time it will be Elliott’s turn at the Rheumatologist.

I hope everyone has as good a day as possible.  :-)   Best wishes to all of you.

**Thanks for reading**

       -Lost and Tired

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Posted from WordPress for Android so please forgive the typos. Auto-correct and I don’t get along very well.

Permanent link to this article: http://lostandtired.com/2012/02/21/four-more/

Feb 18 2012

We’re down 2 kids

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Lizze’s parents have provided a much needed reprieve today. They have taken Elliott and Gavin for the and tonight. :-)

Elliott has been driving everyone crazy with his anxiety. Gavin has been doing as well can realistically be expected. We needed this break because we have an unbelievable amount of appointments beginning this we and lasting through the end of the month. We will basically be moving into Akron Children’s Hospital for the rest of the month, beginning with 5 appointments next week.

Between Elliott, Emmett and Gavin, we have several appointments with the neurologist for seizure concerns. We’re also hoping maybe we can get some more insight into Gavin’s other neurological issues. We will also be seeing the Rheumatologist because of Emmett’s rheumatological issues and Elliott’s joints and tendons. Gavin also has his next antibody infusion on Monday as well.

Later in the month, Lizze has an EMG scheduled. They are in the process of diagnosing neuropathy in her left leg. She will also be back to the neurologist because her tremors are spreading and the existing ones are getting worse, even on the increased medication.

The rest of this month is going to be crazy and we need as much rest as possible to prepare.

 

Permanent link to this article: http://lostandtired.com/2012/02/18/were-down-2-kids/

Jan 07 2012

This weeks insanity

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This week is going to be extremely busy. We have at least 14 appointments before Friday. Monday will start things off with 4 appointments, 1 for Lizze and 3 for Gavin.

Monday with also bring with it a bunch of phone calls. We have to get Gavin into the Mitochondrial doctor and Emmett into the rheumatologist.

Things are gonna be hectic this week without question.

However, hectic doesn’t have to mean bad or impossible. I’m going into this with a positive attitude and I will attempt to maintain that at least through lunchtime tomorrow :-P

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Permanent link to this article: http://lostandtired.com/2012/01/07/this-weeks-insanity/

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