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

Kelly "Supernanny" Fischer on January 13th, 2009 at 11:16 pm #

It is heartbreaking to think that there might just be another huge obstacle for Ella through her life… I can’t imagine what life would be like for me if I couldn’t hear. But, as we know, the Lord will provide. He will take care of sweet Bunness. He always has. But it is so hard to surrender that sometimes–things get so routine with the way they are right now: appointments, therapies, exercises, protocols, routines, etc. It’s hard when something throws a wrench into the system, like her not feeling great (like today); much less hearing loss or something else huge.

I’m praying for your heavy hearts tonight, Josh and Tina, knowing first hand just how real this can and is becoming. I love you guys, and I’m constantly grateful for having the opportunity to live with you and work with Ella every day, to help her become the awesome woman of God we all know she will be.

Sweet dreams.

Kathy in West Texas on January 14th, 2009 at 5:15 am #


Let us go right into the presence of God with sincere hearts fully trusting Him…Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep His promise.

~ Hebrews 10:22-25, NLT

I am praying for Ella, and all of you.

Jenny G on January 14th, 2009 at 8:28 am #

Will be keeping Ella and you in our prayers.

Joan and Steve Odell on January 14th, 2009 at 10:39 am #

Our granddaughter faces many of the obstacles Ella has – we understand how painful this can be. We focus on what she is able to do and the positive things in her life. Our prayers continue for all of you and that your heartaches and burdens will be lifted in His way and His timing. Prayers continue – hugs – Steve and JOan

Chambers Family on January 14th, 2009 at 1:57 pm #

Wow… One more thing to add to your plate. I am so happy to hear that insurance is able to pick up the slack. On another note (my fix it personality) My sister runs a school for kids that are born with hearing loss or deaf. She and the ENT’s she works with are able to teach the to speak. Cochlear Implants. Medicine is amazing. They bypass the ear and connect directly to the brain. So– if you do end up with a diagnosis; there are some great options out there. I know one more thing to worry about is so dis-heartening. We keep up with Ella daily and think about you often!

loren lizotte on January 14th, 2009 at 3:27 pm #

Wow! What a week! Great news on the insurance more pt sounds exciting. I continue to pray for Ella and for her parents. I agree with Chambers family, a lot of the modern medicine has come a long way with regards to hearing aids. Big hugs your way.
Always thinking about you.

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