Peanut Butter Instincts

Sigh...

That was my sweet breath of relief.

I knew the moment my phone rang it was regarding Hayden. Besides, those who do know me best know that I don't answer when you call for me anyway!

The first call was nothing fancy. Hayden had a neurologist appointment last week. They increased his medication and referred us to a sleep specialist... I knew right away which specialist I wanted to see. Phoenix Children's Hospital has a pediatric neurologist that specializes in sleep disorders and seizure disorders. Vicky, the scheduling Coordinator had called to let me know that I could see the doctor of my choice. This doctor however had a wait list that seems decades long. So I chose another doctor and Hayden will see yet another specialist next month. This will be in addition to his appointment with the developmental pediatrician and our consultation with the geneticist. The next 30 days will be busy for us all!

Phone call number two: Sharon. Sharon was our PAS (preadmission screening) assessor. She came out to the house at the beginning of the month to assess Hayden's need for state services and state funded healthcare. In order to be eligible for Arizona long term care, a patient must be at a "nursing facility level of care " ( For the record, getting approved for long term care is not easy when you have such a cute kid!) As most people continue to tell me, Hayden is just fine, looks normal and has nothing going on with him. I would like to clarify, that Hayden is beautiful, nobody is normal and while Hayden has some challenges, they are not limitations or excuses.

Anyway, back to Sharon. Sharon was such a sweet lady; a bit ignorant when it came to autism, epilepsy and developmental disabilities. But she meant well and was a great support. Last we spoke she promised to call me the moment she had an answer... and she did. I usually let most calls go to voicemail. But when I saw the unknown number come up on my phone I had a feeling it would be her...and it was. Her voice was melancholy... my heart sank. To be honest, I am tired. People ask me how I am doing and I smile and I say all is well. But, I am mentally and emotionally exhausted.

After verifying some information, she said "I promised I would call you, so this has not been entered into the system yet. The moment I received the answer I stopped everything I was doing to let you know. The report here says that Hayden is "unstable" and "has significant needs medically and developmentally." So based on the physicians review, it is determined that he is eligible for ALTCs."

Yet another bitter sweet moment:

Nobody wants confirmation, yet again, that your child has special needs. But, words can't even describe the financial constraints that have been placed on us in effort to get Hayden all he needs. Doctors, Medicine, Therapy...it all adds up and it adds up quickly. The finances lead to tears, the tears to added stress and the stress to family challenges. I would like to say that a large load has been lifted...

But, I'm realistic. I know what comes next...more therapy, more appointments and the constant need to stay organized and focused. Our savings account has been wiped clean so on a bright note, we can at least now pair with the words "we can do this" and "we can make this happen"...and with that, yes a small load has been lifted.

Recently I came across the quote "The only way to take care of your children is to take care of yourself.". So, as stated in earlier post, I have made baby steps toward "taking care of myself". I was able to complete my 45-day challenge. 45 days, 43 injections, 500 calories = -23 lbs & -11 inches! Not bad, but there's still a long way to go! Today was my first day in phase 3 of the diet. Weird to eat 1300 instead of 500 calories. I actually counted down the minutes to getting my first taste of peanut butter. Yum....