We have spoken with almost all of the doctors today. Gavin's autonomic specialist at the Cleveland Clinic basically said that we have to get into the mitochondrial doctor ASAP.  They said that we can't message around with this at all. Dr.  Reynolds office called back this afternoon and moved us up yet again.  Now we will be seen at 3pm instead of 7pm. From what we understand,  the very least that we are looking at is blood work,  twice a week. I don't think I have to explain just how unpleasant that will be,  for all involved. We toyed around with actually withholding his meds tonight but decided to keep the status quo, as it's best to let the professionals handle this.  Not to mention,  the last thing in the…

It didn't take long.  The honeymoon phase, if you even want to call it that is over.  We are already having problems.  The honeymoon phase is the period of time that goes by before things return to normal. We were at Dr.  Patti's office tonight with all 3 boys and it was time to put the toys away. Gavin and Emmett were putting the play food away when Emmett decided to pretend to eat the food before placing it back on the floor.  Gavin would pick it up and Emmett would pretend to eat it,  and put it back on the floor. Instead of walking away or coming to get us,  Gavin just began screaming at Emmett,  right into his face.  I was there in 5 seconds and grabbed Gavin…

I'm just a tad bit frustrated at the moment.  The nurse that I spoke with last night and this morning did not provide accurate information.  We were concerned yesterday because of the day to day,  extreme fluctuations of Gavin's lithium levels. This morning she reported to me that Gavin's levels were so high because he had just taken his meds prior to the blood draw. That turns out not to be the case. Gavin was admitted Friday night and received his medications at 11pm that night.  They drew his blood around 7:30-8:00 am the following morning.  At that point,  Gavin's levels should have been low because he was due for another dose.  They call that being in a trough. Basically,  Gavin's levels drop as time goes on.  This is why…

We are on our way to go pick up Gavin.  Wish us luck. Rob :-) **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store 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.

Akron Children's Hospital just called to let me know that Gavin is ready for pick up anytime today. We also learned why Gavin's lithium level was so high.  Apparently,  when they took his blood the other day in order to check his levels,  they did so shortly after he took his medications.  That is why his levels are so high. His levels are back to . 7 once again. That's obviously a good thing. I wish they would have caught this a bit sooner because we have been in a panic since yesterday. I have a call into Cincinnati Children's Hospital, as they do inpatient care. Other than that,  Gavin's coming home this afternoon and not only are we worried but ill prepared. Nothing has changed with him.  The only…

We are on pins and needles waiting for the hospital to call us this morning.  I called them last night and expressed my concern about releasing him with so much in question. Lizze made a ton of calls this morning to all Gavin's doctors and we are waiting to find out what is going on.  I'm so stressed out and overwhelmed right now.  **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store 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.

Sometimes,  when things are really tough,  I need to remind myself,  why I do what I do. Every night,  before I got out bed,  I'm reminded of the answer. Autism can be so challenging and our kids persnickety.  My wife likes me to use the word persnickety. :-) No matter how tough things get,  or how frustrated and overwhelmed I am,  I can't give up.  Through all the exhaustion I have to find the strength to get up just one more time.  I know many of you out there understand.  This is my reason or rather, reasons for doing what I do. **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store This was posted…

Lizze and I met with Dr.  Patti tonight and discussed Gavin.  We also did some research while we were there.  Things may have taken a turn and become a bit scarier.  At this point,  I feel that we will once again have to put a hold on the mental health issues and return to the medical side. I mentioned earlier that we stumbled onto a new piece to the puzzle this afternoon.  Gavin's lithium level has hit dangerously high levels.  The very concerning part is that this has occurred even though Gavin's dosage hasn't changed in over a year. This is a very big problem,  that was almost missed. Let me clarify, the cause was almost missed. They had assumed, as anyone would, that his dosage was simply to high. …