We arrived a little while ago after battle idiot drivers and horrible traffic. Gavin did well on the way up but Lizze isn't feeling well.....at all. Please say a prayer that this is quick and painless....but also productive. This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired "Like" me on Facebook Visit the My Autism Help Forums To reach me via email, please Contact Me

Elliott was not having a good morning.  He was in full freak out mode and I have no idea why. We finally got him dressed and off to school but I'm not sure what kind of day he's going to have.  In many ways, Elliott is paying the highest price for all the chaos, as it clearly hits him the hardest.  My hope is that he will find his way.  We are doing everything we can to help him but it's clearly not enough. With any luck, as the school year wares on, he will adjust to the new rhythm and get into his groove. Elliott doesn't handle change very well and there's been a great deal of change recently.  We'll get this figured out.  This site is managed almost…

In a short while, we will be making our way to see the amazing Dr. Moodley at the Cleveland Clinic.  This appointment was originally scheduled for the end of the month but they wanted to see him sooner due to his recent hospitalization. While we are there I have to procure some records to scan and email to John's Hopkins Ataxia Telangiectasia Clinic. I don't know what more can really be done but we might have to adjust his medications a bit to try and further stabilize him.  At this point though, everything that can be done, is being done. Even though it doesn't feel like we are doing everything possible, we are.  I don't expect anything major to occur as a result of this appointment.  The truth is that…

Check out the way Elliott signed his name on the student contract for school.  This is his version of cursive.  He's two stinkin' cute.......   :-) This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired "Like" me on Facebook Visit the My Autism Help Forums To reach me via email, please Contact Me

I'm so stressed out over this medication thing with Gavin. Dr.  Reynolds called us around dinner time to let us know that even after speaking with a doctor from the insurance, they are still refusing to cover the Clozapine. He explained that they did agree to cover a 3 day supply, so that he will be okay while they try to work this out.  Dr.  Reynolds faxed over the new script and I spoke with Walgreens but Buckeye is still refusing to pay. The pharmacist said that he would call and find out what's going on.  At this point, I haven't heard back yet and that has me quite worried.  If I had the $400 I would pay out of pocket for this one and give them a month to…

We all have those days where it just can't be over fast enough.  My question to you is this.  What's the very last thing you want to do after a long day of special needs parenting? For me, I suppose it would be cooking dinner.  The last thing I want to do is cook 3 or 4 different meals, at least twice, due to sensory related food proclivities. Sometimes I will just opt for Little Caesars $5 pizzas.  I can feed everyone else for less than $11 and everyone's happy.  This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. ;-) Follow @Lost_and_Tired Visit the My Autism Help Forums To reach me via email, please Contact Me

Today has been a rough one for me.  I'm battling with the insurance company for Gavin's meds and that future is up in the air at this point.  I also spoke with John's Hopkins today, more specifically, the AT Clinic at John's Hopkins. They received the faxes from the Cleveland Clinic but the last 10 pages were not clear.  I have to get those in the morning and email them to AT Clinic. I spent a good chunk of time on the phone with them today.  We discussed Gavin's current condition and his latest hospital stay.  We also discussed the possibility of making the journey out there.  At this point, we don't know what's going to happen.  She's going to speak with the doctor and figure out what we should…

Lizze is in really bad shape today and so she's sleeping still.  After my morning walk I began a wave of phone calls. My first call was to Dr. Reynolds office to inquire about the status of a physicians override for Gavin's Clazopine prescription.  I needed to follow up on the denial letter we received from Gavin's insurance company yesterday. Turns out that Dr.  Reynolds office has submitted the needed paperwork 2 or 3 times already and each time, it's denied because Gavin's dosage is higher than that of the FDA recommendation. What does this mean for Gavin? This is considered a crisis situation because he's got one dose left and that's it.  If he comes off the meds and starts them over again at a smaller dose, the life…