Posted (Tina) in All Posts on August-27-2010

Great news! We are still finalizing all the details with the school district, but Ella does qualify for school services in our home due to her medical needs. That makes me very happy. She needs occupational therapy, physical therapy and speech therapy. So we will be getting likely 2-3 hours per week from licensed providers in our home that work for the school district. Since we are still finalizing the IEP, services have not started even though school has started.

Apparently, getting the verbiage on the IEP is very important. I secured an advocate from ARC (a non-profit organization that supports families with disabled individuals) and she has been an invaluable resource. The advocate and the school district are still at odds as far as some of the verbiage in the IEP. But once we can work that part out, we should be good to go. I know that therapy in the home setting is the best choice for Ella right now based on her health issues. I hope that someday she can be healthy enough to be around kids every day and I do think we’ll get there, but I know that she is still too medically fragile for a classroom setting right now and so do her doctors!

We’ve still had GI challenges with feedings. Once we saw more army green colored bile coming from Ella’s g-tube, we backed off of food for a day or two. Now, we’ve started slowly introducing food back into her diet (more diluted with water than normal) and are working to get our way back to full feeds. Apparently, the break for her intestines did wonders. It is like starting over and having her feel good, no discomfort with feeds, etc. I can tell if I’ve added too much food or pushed her too hard because I get discomfort, fussiness and/or loose stools. So, it’s a challenge but at least giving her a break is an option for now. It also seems to have slowed down and/or eliminated the angry dark green bile. I guess that is her system’s way of telling us to back off or else!

We’re waiting to hear on her Medicaid Waiver approval/denial. We did get a letter from the state noting that they received Ella’s Medicaid Disability application and that they do consider Ella disabled, according to the state’s definition. That is another step in the right direction for securing Medicaid. Did I mention it is hard to read a letter that states that your child is officially considered disabled?

This verse hit me recently:

Psalm 37:3-6
Trust in the Lord, and do good;
dwell in the land and befriend faithfulness.
Delight yourself in the Lord,
and he will give you the desires of your heart.
Commit your way to the Lord;
trust in him, and he will act.
He will bring forth your righteousness as the light,
and your justice as the noonday.

Along those lines, Ella and I spend time in her room in the mornings after her first feed. We cuddle and listen to the local Christian radio station together for long, lazy mornings. God always uses songs to speak to my heart. It is His way of telling me to continue to believe…to not throw the towel in when I have those really challenging days…to continue believe in Him and His promises no matter what the physical world and circumstances might tell us.

I love my little girl so much…and I know deep down that He has a plan for her.

This song is by Kutless. You can listen to it below (there is an intro advertisement).

What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don’t have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That’s what faith can do!
Even if you fall sometimes
You will have the strength to rise

Heidi Ham on August 27th, 2010 at 12:58 pm #

That is wonderful NEWS Tina…so glad that therapy will be in the home for now with Ella. Hope you and Josh are doing great as well.

Marge (A Friend in Indiana) on August 27th, 2010 at 1:11 pm #

So glad to hear the good news; love this sweet little Ella….it would be hard to see it officially written that your child is disabled but there is nothing ‘disabled’ about Ella’s ability to inspire and show the Lord’s light in her beautiful eyes and smile. Take care

Dana Chambers on August 27th, 2010 at 1:18 pm #

Sweet Curls! Glad to see some new pictures and get an update. You are a strong woman!

Loren L on August 27th, 2010 at 1:21 pm #

Love to see Ellas photos. I’m glad that you found the advocate for Ella. It must be like having hind sight with the advocate around, they know exactly to what to say to get you the help that you guys need. Tina I can see that I too would be crushed to get a letter in black and white that says my child is disabled, but you know so is Stephen Hawking and many others, even the Pres:)

Adrienne (Melissa's sister) on August 27th, 2010 at 1:32 pm #

Yes.. His plans are bigger than ours! Thankful for that! Great news Tina!

Grandma West on August 27th, 2010 at 2:23 pm #

Oh sweet Tina I am So happy about the news The song you sent wonderful Talk to you soon love Other Mother

Jill E G on August 27th, 2010 at 2:24 pm #

So glad therapy will come to the house. I hope you do get assistance with medicaid. Try not to take the disability personally. I know I take it to heart when drs say negative things about Gus. You are a wonderful mom fighting for Ella’s needs.

Dawn Franck on August 27th, 2010 at 3:35 pm #

I’m so glad to hear she was approved for in home therapies. You are a GREAT advocate for Ella : )

Take care,

Steve and Joan on August 27th, 2010 at 4:52 pm #

WONDERFUL news….prayers for each of you and the Lord know your needs. He will supply in his time however sometimes it seems slow…hugs and love, Steve and Joan

Eve Johnson on August 27th, 2010 at 5:33 pm #

Wonderful news! “Disabled” is used because they’re not allowed to use “uniquely blessed.”

Fran on August 27th, 2010 at 7:06 pm #

So happy there will be some help coming to you! As always Ella, your beautiful smile makes me smile! Hugs and love to you wonderful three!

Sherl on August 28th, 2010 at 5:15 am #

Love the words to the song you posted. God is amazing and so is your daughter!

Janel Litzner on August 28th, 2010 at 5:34 am #

I don’t write often, but follow your updates faithfully on sweet little Ella. As a mom of a DH baby as well, I find your blog a source of support for myself as we are facing similiar challenges. We have deemed the same song by Kutless as “Elijah’s song”! May you continue to draw your strength from Him. He is ever faithful to provide what we need day by day…hour by hour…minute by minute. Please know that your family is such a blessing you us. Continuing to pray for Ella and mommy and daddy in Wisconsin!

Lesli Richards on August 28th, 2010 at 1:28 pm #

She is so cute! I know what you mean…I hate seeing things in writing too. Praying for you all.

Williamsburg on August 28th, 2010 at 10:28 pm #

As always, both rejoicing and weeping with you. And loving you all. Thank God for the radio. XOXOXO

Nanette on September 2nd, 2010 at 9:14 am #

You are working hard at getting the help you need, even if it takes a label. Nobody knows yet what Ella will accomplish and you are doing everything you can to make sure that she has all the opportunity she needs to progress and achieve.

Merrilee Batchelor on September 3rd, 2010 at 6:50 am #

Just such a darling little school girl.

Brenda on September 16th, 2010 at 7:09 pm #

I came across your site while searching for a name for my own blog about my child who was born CDH. He is now 7. Your story and little girl are amazing. Thank you for keeping this blog and letting people into a very personal part of your life.

denise on September 17th, 2010 at 10:01 am #

I came upon this site when looking for a “Prayer” clip art for our church bulletin. Ella’s so beautiful and so full of joy. God has blessed her with the perfect parents. I will keep you in my prayers her in San Jose CA. Thank you for blessing me today.

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