Help for Hope!

Who can say no to this sweet face?! 🙂

Our Hope is now 15 months old! Many of you know her story, but for those who do not, here is a quick summary (you can read past posts for more in-depth information). She was born prematurely with Spina Bifida and hydrocephalus, and soon after developed a feeding intolerance and swallowing dysfunction. Her swallowing and feeding problems currently require her to have a trach, a feeding tube and oxygen. She is unable to take anything by mouth and, of course, she can’t audibly speak. She constantly aspirates her own secretions and, consequently, suffers from chronic lung infections and has to be suctioned out A LOT. She underwent 6 surgeries and many more testing procedures just in her first 7 months alone. Our sweet girl has come a long way (she rolled over on her own just this past weekend!), but she has a long way to go.

The cause of Hope’s airway, swallowing and feeding issues is undetermined, and we’ve exhausted our resources locally. Our doctors here have no answers and are mostly just treating symptoms and side-effects at this point. However, we now have an awesome opportunity! The internationally-renowned Pediatric Aerodigestive team at Cincinnati Children’s Hospital has accepted her case and already devised a collaborative plan of testing that will hopefully lead to some answers.

We so long to hear our little girl’s joyful laugh, but there are 600 miles between here and possible answers. Please consider donating to help Hope get the care she needs and deserves. We would be very grateful. Any additional funds will go towards future visits/expenses and an accessible van.

Feel free to join our Facebook group for updated information – Help for Hope.

Thank you and may the Lord bless you!

Click below to donate through Paypal

Rejoice in hope, be patient in tribulation, be constant in prayer. ~ Romans 12:12

Let It Go

I’m a list maker.

I think it started sometime between my late teens and early twenties. For many years, it was just a way to get all the jumble out of my head. The need increased during the pregnancy of our second child when I began to suffer from serious “pregnancy brain.” (Incidentally, I also turned 30 at that time, so I’m not sure which was to blame.) It never went away, and the dependency on my lists increased exponentially after the birth of our third child.

Read more at my guest post HERE.

You should see the other guy

Last Tuesday, Hope had a broncospy scope. She was put under anesthesia and her ENT looked in her airway for problems and/or progress. Sorry I haven’t shared this or the results. It’s been a busy week and it’s hard to type it all on my phone.

Hope’s airway looks good except for a granuloma in her airway above her trach. It doesn’t appear to be causing any issues right now, but is blocking 50% of her normal airway and would have to be removed if they took the trach out.

The ENT now believes that her inability to manage her secretions is neurological and not congenital – meaning it isn’t something she can just outgrow by getting bigger. The trach is essentially treating symptoms (excessive secretions and aspiration) and if it were removed at this time, her lungs would fill up and she would drown. As of right now, no changes will be made. We’re still hoping to get her on an HME valve sometime in the near future (it’s basically a humidification filter that wouldn’t require her to be connected to anything), but she has to be off of oxygen for that. We had her weaned to the minimum amount during the day, but since she got pneumonia again a couple weeks ago and a nasty case of bronchitis now, she’s on more oxygen than she’s ever been on. It seems as if we are moving in the opposite direction. It is somewhat discouraging, but we continue to trust God.

Today is Hope’s birthday. The Lord revealed something to me today – today is a victory! I woke up this morning looking like I’d been punched in the face after a long, hard night of her bronchitis. I jokingly said to my husband, “You should have seen the other guy.”

I then received messages from my mother that she had been praying since 2am without even knowing anything was going on during the night (God often wakes her to pray like this). She also sent me this scripture:

Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does. – 1 Peter 5:11 MSG

God revealed to me that a spiritual battle is waging, and though my swollen face has a physical cause, I feel it is also spiritual…physical evidence of a spiritual battle. You see, Satan wants to destroy my child and my family. He has set out to destroy her from before she was born. Many of you have told us over and over, and we have said it ourselves, “God has big plans for her!” Well, guess who else knows that? She has touched so many in just her first year, and she can’t even talk yet! Just wait until she gets her say! So yeah, he has tried and is trying to destroy my child…but what the devil meant for evil, the Lord is using for good!

I hold to the words the Lord spoke to me back in July when we were making the gut-wrenching decision whether to go through with decompression surgery to relieve her Chiari malformation, and He reminds me often – “I’ve got this!” God sees the big picture. God saw 6 months down the road when the MRI would show that she has NO Chiari malformation. I see this moment. He sees from beginning to end and on into eternity. He reminds me of this as my human self gets weighed down and burdened for her suffering. When I don’t get the answers I want now. That still, small voice reminds me again, “I’ve got this. I’m in control. Let it go. Rest child.”

Rest. Something I could really use right now. Will you continue praying with us and for us? Help us fight this battle.

 

But You Don’t Homeschool Yet…

Check out my first post over at So You Call Yourself a Homeschooler!

Recently, I was sharing my news about becoming a contributing writer for this blog with a very close relative (whom I promised would remain nameless). I had just received my writing themes and was sharing my excitement about this new endeavor. To which he incredulously replied, “But you don’t homeschool yet.”

After I picked my jaw and my ego up off the floor, I sat quietly for a few minutes thinking about this statement. Stewing over it was more like it.

Then….an EPIPHANY!

Read more: http://www.soyoucallyourselfahomeschooler.com/2013/04/20/but-you-dont-homeschool-yet/#ixzz2R3V3sR34

Created for a purpose

“Before a young couple is faced with the hard news of disability, will they see children with disabilities in your church? Will they see mothers and fathers with disabled children acknowledging the pain yet standing in the strength that God provides?”

This is why I write this blog. This is why I write and speak so honestly. This is why I call myself a missionary.

To read the rest of this post by John Knight for Desiring God – go here.

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“As he passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’Jesus answered, ‘It was not that this man sinned, or his parents, but
that the works of God might be displayed in him.'”

~John 9:1-3~