Tuesday, October 19, 2010

Sleep Disorder

We had a very encouraging visit with Dr Rice, Tucson's only developmental pediatrician, yesterday morning. We thought we were going to have to go see a developmental pediatrician in Phoenix or somewhere out of town as Dr Rice is booked months to a year out. But as a favor to us for being post a post ECMO patient still in contact with the hospital, a UMC doc *to remain anonymous* called in a favor. I am exceedingly grateful to that Doctor. They will never know how much.

We talked for about twenty minutes with Dr Rice and for twenty minutes she played with Tenley. After hearing about Tenley's sleep for the past year she decided any other problems were irrelevant to a diagnosis at this point. She was diagnosed with a sleep disorder, whether its causal or secondary to everything else, we don't know. Grossly irregular sleep and or sleep deprivation can cause all of her other symptoms, so we can't assess her developmental status til she has been well slept for a month.

She prescribed her Trazadone, an antidepressant which is commonly used off label as a sleep aid. She said I can start with as low a dose as a quarter of a 50mg tablet, up to one and a half 50mg tablets. Well, since Tenley is like an elephant and takes a whole lot of tranquilizing...she got three quarters of a tablet tonight. It is supposed to make her too sleepy to fight me in about ten minutes. Quarter of a tablet at 6:55 pm... another quarter at 7:38pm....another quarter at 8:16pm...8:37pm she starts down the hall toward me for more protestation, but stops to rest on the laundry pile and goes to sleep. She would not give up! Even now she keeps half waking up and crying for a minute at a time.

Dr Rice said once she has had a solid sleep schedule down for six months we can start to wean her off of it and see how it goes. I'm crossing my fingers that when that day comes she'll be able to come off of it!

So...that's where we are right now. We will put the "autism" word on the back burner. Which is kind of a relief. I'm an information junkie and I was learning way too much about Autism and becoming discouraged, so I'm happy to pretend its not a possibility right now.

This blog update brought to you, with the time given me, courtesy of....Trazadone :)

Tuesday, October 12, 2010

Hello, Mischief!

Apparently someone woke up and was hungry. Helped herself. Oh, Tenley...

Saturday, October 9, 2010

Developmental update for Tenley, October 8th

According to the assessment made by the developmental specialist and speech and language therapist from AzEip (Arizona Early Intervention Program), Tenley was made eligible for Aezip services under the Developmental Disability Program. Our awesome Support Coordinator, Audrie, came to the house today to help us get the ball rolling on the different services and make some goals for Tenley in the program. 

Our three main goals are:
Sleep: Get her to sleep on a consistent schedule and help her transitions into sleep and also waking.
Tantrums: Help her improve the use of her language and communication to avoid frustration.
Empathy: Help her understand what it means for another person to be hurt or upset, so that she can socialize safely and somewhat normally.

She also gave us some verbatim to recite in public when we get those stares or whispering comments when Tenley's having a melt down. "I apologize, I know this just appears to be a tantrum to you and we regret that it is making you uncomfortable. But our daughter is [special needs/ autistic] and we really do appreciate your understanding while we are trying our best to accommodate her special needs in public. Thank you."

When she turns three she will also get to go a special needs preschool based on what district we will be living in at the time. We are going to check out the programs in the Amphi school district (where we live now), and the Marana school district (the area of the rental we are thinking of moving into) to help us make our decision to move or not. I have a feeling we will be moving. After she turns three the funding for Tenley's services aren't paid for through the AHCCCS program, they are paid for through the school district. And with all my experience with Amphi, they're idea of fiscal management is a big. fat. joke and I worry about what they might not deem necessary.

We also saw her regular pediatrician today to keep her in the loop and get her help with finding a developmental pediatrician to make an official diagnosis. She wasn't concerned a year ago but is very concerned now. She is seeing a little bit of what I see at home. The DP in Tucson is booked for a year out, so we are looking at seeing one in Phoenix if our insurance covers it. If not we will go back to the Neurologist for a diagnosis and get on the year waiting list for the DP here in town. The Dr also thinks that while Tenley certainly has learning troubles ahead, she will be very smart and great at science and math. Hellelujah. With Jon and I as parents, you might worry about her aptitude in those areas :)

This is a little overwhelming for me but honestly, I'm grateful to be getting acknowledgment and help. It helps me feel like I'm not really such an inadequate parent. That being Tenley's mom is rewarding and beautiful, but also hard hard work, even for a stubborn toddler. It is a struggle every single day. Every single day I have to draw upon every last ounce of patience I never knew I had. The good news is it's forcing me to become a better person. I'm forced to become more calm, to let go of my pride and control, and to love every single happy little thing. She is my Mount Everest and my pride and joy. Love you, silly girl.