Thursday, April 23, 2009

A good day...no, a GREAT day


I was on cloud 9 today. It was the kind of emotion that made me seriously contemplate running through the grass and pausing every few seconds to do twirls while belting at the top of my lungs "The hills are alive, with the sound of music". Although, there aren't too many hills in this neck of the woods...and twirling makes me dizzy...like pukey nauseous dizzy, and that would just put a big ole' damper on my cloud 9 emotion.
Today, God answered a prayer that I have prayed many, many times...lifted a burden that we have bared for many months...and I just can't stop smiling. You see, we have known that Nathan has needed Occupational therapy for many months now to not only help him with certain areas of development, but to help maintain the strength and mobility he does have, along with helping him with energy conservation. Only, our insurance doesn't cover OT.
A few doctors suggested that I contact our Early Intervention program through the state, but I was hesitant since we were already settled into a wonderful physical therapy program through the hospital. And when I finally did contact them, I had an awful...just plain awful experience with the woman assigned to oversee Nathan's case. This woman made me cry, and I don't cry that easily...she was just so combative and didn't seem to have any interest in helping Nathan at all. This was the woman who was supposed to be overseeing his case with Early Steps. (Turns out it wasn't just us, as she has had numerous complaints against her.)

I was going to back out of the whole process since I had believed that we had reached yet another brick wall, but the supervisor at Early Steps assigned Nathan a new case manager, and Jay convinced me to keep the evaluation appt we had today. Honestly though, I thought it was going to be a waste of time, as our old case manager implied that Nate would not apply for services since he was not severely delayed...even though he automatically applies for the program due to his diagnosis. I know, it's all very confusing. Regardless, I thought it would be a waste of time today but was prayerful that God would intervene and provide Nathan with the services he needed to help fight against this disease.
Wow, what an incredible appointment. There are 5 women on Nathan's team, and they are all very sweet and caring women. His new case manager is a wonderful woman, and I am ever so thankful for that change. His therapists are very knowledgeable of neuromuscular diseases (and one of them has had a patient with mito before), so they knew what to look for in Nathan's strengths and weaknesses. They listened to my concerns for now and for the future and nodded in agreement with everything I brought to attention. And in the end, they agreed that Nathan definitely needed some OT every other week along with the PT he gets monthly...and they will be reaccessing along the way as soon as he may need help in other areas (speech, development, etc).

I am so very thankful for this appt today. I am so incredibly thankful for this answer to our prayers. And I can not explain how much of a weight this is off my shoulders for the time being.

12 comments:

Anonymous said...

That is so fantastic!!!!!

Linda

Michelle Garvin said...

What fantastic news! And a definite praise! Isn't it such an amazing feeling to see God answering your prayers...even if it isn't on our timetable :) Congrats!

Kim and Asa on April 24, 2009 at 12:10 PM said...

I'm sorry you had such a horrible experience before but I'm thrilled it is straightened out! God does provide doesn't He! What a blessing for Nathan and you!

Amanda on April 24, 2009 at 2:58 PM said...

Oh how wonderful!!

Dana on April 24, 2009 at 3:47 PM said...

So glad! He is the cutest thing Amber! Can't wait to hear about his progess from OT! Love,
Dana

Kathy U on April 24, 2009 at 10:11 PM said...

I do love to follow your blog, because I can so see the Lord's handy work almost daily. It warms my heart. Love ya'll
Sis Kathy

Laura on April 25, 2009 at 7:17 AM said...

That's wonderful Amber! So glad you had such a better experience!

Katie on April 27, 2009 at 8:22 AM said...

That's wonderful news, praise God!!

mandie on April 27, 2009 at 11:24 AM said...

i found your blog through ana maria's blog. my one-year-old son was just newly diagnosed with mitochondrial disease. we are waiting for a muscle biopsy to determine what type.
i just need to surround myself with mothers who are going through a similar experience.
your family is beautiful!

April and Robert on April 27, 2009 at 12:33 PM said...

What a wonderful blessing! We are still continuing to pray for you and your family. How is Hailey doing?

~sydney~ on April 27, 2009 at 1:52 PM said...

What a wonderful blessing, Am! We've been praying for little Nate and will continue to. This is such fantastic news to hear!

Jill on April 28, 2009 at 8:20 AM said...

WONDERFUL NEWS! I'm so thankful the Lord blessed you with therapists that are caring... and knowledgeable. We continue to pray.

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