Posted (Tina) in All Posts on January-13-2009

Ella was fussy most of the day. The picture above seemed like one of the only moments that we were able to catch a smile.

She was up many times last night. I was out of bed about 6 times between midnight and 6am. Then, I just gave up and decided to face the day albeit tired.

Kelly kept checking Ella’s temperature throughout the day. Also, she hooked her up to the pulse oximeter to watch her numbers. Ella was requiring more oxygen. And she never had a fever but her stools were loose. She was fussy and cranky. Therefore, her therapy sessions did not go well. Ella just wasn’t in the mood.

Tonight, the OT, PT and case manager from the federal and state funded intervention program came to the house for a Care Conference. It was a chance to update the original evaluation that happened over the summer. So, it had been 6 months and we were able to review everything related to Ella (growth, doctors, medications, developmental milestones, physical, cognitive skills, emotional, speech, etc.). Based on our evaluation, Ella met the few goals that we set for her back in the early summer. So we discussed new goals for Ella to achieve over the next 6 months, like sitting up with minimal support, rolling from back to belly, eating 1 ounce of baby food 2x per day, etc, etc. Now that we have a solid PT and OT in place, it will be good to see if we can meet or exceed these goals we’ve set.

On a similar note, it looks like our insurance plan is going to kick in and cover additional OT sessions too. This means that Ella will be able to have PT & OT up to 4 times per week. This is really good for her considering that we have so much catch up to do.

We also talked about speech therapists. There is a good one that lives close that might be available starting in March. We know that Ella will need some help in this way. And something we have not shared lately…we’re a bit concerned that Ella might have hearing loss. She doesn’t just respond to our voices or noises. Her initial hearing test was inconclusive. Based on the brain activity they noted at the time, it seemed like things looked okay, but the test was not complete. In fact, they mentioned that she might be having trouble hearing low frequencies, but would need to test at a later date to get better results (test upcoming in March).

The likelihood of hearing loss is very real. Ella is at a higher risk since she went on ECMO and has used diuretics for a long time. Both can cause hearing loss. When you begin to think of her journey and realize what it might mean for her in future days, it makes our hearts hurt. Ella has enough obstacles to overcome, much less hearing loss. We pray that this is not the case.

Psalm 13 (NLT)
O Lord, how long will you forget me? Forever?
How long will you look the other way?
How long must I struggle with anguish in my soul,
with sorrow in my heart every day?
How long will my enemy have the upper hand?

Turn and answer me, O Lord my God!
Restore the sparkle to my eyes, or I will die.
Don’t let my enemies gloat, saying, “We have defeated him!”
Don’t let them rejoice at my downfall.

But I trust in your unfailing love.
I will rejoice because you have rescued me.
I will sing to the Lord
because he is good to me