Wednesday, October 28, 2009

"Refer"

One magic little word...."Refer" used to replace a much harsher sounding word..."Failed."
Being a teacher of the deaf I was certain my children would be born deaf. The newborn hearing screening wasn't mandatory at the time but I made sure Noah was screened. Then with Jordan and all of her issues they told me they weren't going to check her hearing. They said it wasn't routine. I very politely informed them that I wasn't leaving until they checked it.
Well she got a "Refer" which is a nice politically correct way of saying that she failed her hearing test. For four months she tested with "no reponse" to sound. The audiologists assured us that it was probably just fluid but I wasn't able to look at or even go near the shelf in our house with my textbooks on hearing loss until I knew for a fact that she could hear. The potential was devastating to me. Thankfuly she got ear tubes and was cleared with great hearing.
I've wondered a few times about all the ear tube surgeries she has and what the lasting effects will be on her tympanic membranes (ha - big word for ear drum...just thought I'd impress you with my vocabulary). A while back she "referred" during a doctor's visit hearing screening but an audiologist who doesn't usually test kids said she was fine (even though I heard her miss high frequency sounds). Then I took her again to the ENT for something else and she "referred" again. Later I tested her myself on an audiometer and it showed a high frequency loss. I chalked it up to attention. Today we were back at the ENT for a tube check and she "referred" again.
The doctor thinks it might be hearing loss due to scar tissue. Bummer. We're praying that they don't send us back to that same adult only audiologist and that we can get to the bottom of this. Thankfully I think it is only in one ear which means even if it's a significan high frequency loss she would not necessarily need hearing aids.
We will keep you posted on the insurance approval and the test results. Pray that we can get in to Providence and that we can get some advice on these surgeries and the lasting affects of ear tubes. Her ENT said she'll have to have them forever.

Monday, October 26, 2009

Making the Most of Every Opportunity

A couple days ago a friend asked on Facebook if anyone had any advice for her toddler who has to be sedated for an endoscopy (a camera thing is put down his throat into his G.I. tract I think to find out why he eats so little). If I'm wrong, correct me in the comment section.
Anyway - he has to be sedated so her question was how to comfort him and prepare for the anesthesia and how to get her mind around the sedation.
I began to reflect on my experience with Jordan (8 sedated surgeries in two years with one of the surgeries resulting in nearly a week of sedation with a breathing tube which can make people so crazy that they typically keep them full of anti-anxiety medication the entire time). I relish the few times that our challenging experiences can actually prove useful for other families in similar situations, facing the same feelings and needing practical advice.
Often the first thing that comes to mind is the basic practical advice such as, try to enjoy the time in the waiting room with a cup of coffee, a book, undivided time to read your Bible, etc. This time my mind very quickly went to "making the most of every opportunity."
Ephesians 5:15-16
"Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil."
As Christians (those who put their trust in Christ) we are promised trials and it does matter how we face those trials. We should anticipate these times and see them as fantastic opportunities to "train our children in the way they should go so that when they are old they will not depart from it." Proverbs 22:6 My sugestions to Kim were to use this as a time to put her words into action and show her son what it really means to trust God. It is a chance for her to pray with him, to explain (in 2 year old language) the sovereignty of God, the directive that we are to "be anxious about nothing but in everything by prayer and petition with thanksgiving, present [our] requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus." Phil 4:6-7 She can be self-controlled and strong for her son as he looks to her for a reaction and response.
I have prayed so much with Jordan over the past three years that she has come to rely upon prayer (as much as she can really get her little mind around it) as a source of comfort and strength. With eight surgeries she has had literally countless doctors visits, pokes, prods, needles, tests, x-rays, pin removals and of course her all-time favorite the cast removals using the handsaw. I can't count the times I've had to hold her down and she still talks about cast removals with her screaming and me covering her mouth with my hand. She would know it was coming so while we waited for the doctor to come in she would literally CLING to me while I prayed with her. After her last big surgery she was in pain, uncomfortable and literally all she wanted was for me to pray. She would cry non-stop, "Pray Mama, PLEASE!" This reliance on prayer (at a very basic level for comfort) came from me purposing, as scripture commands, to make the most of every opportunity. As John MacArthur states in his commentary, "We are to make the most of our time on this evil earth in fulfilling God's purposes, lining up every opportunity for useful worship and service."
Everything in our lives, as Christians, should be used to "redeem the time" (MacArthur states that this refers to one's lifetime as a believer) so what better opportunity than to show your children directly how to do well in trials. I hope that Kim will make the most of this trial with her son to practically show him God's plan for us during the trials in our lives.
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I LOVE this picture for the post because it captures the image I have in my mind that I've seen countless times...my daughter - my baby - staring at me, unable to say anything, watching and waiting for my response in order to gauge how she should respond. By God's grace and through MUCH prayer I can look back and say that much of the time I made the most of those opportunities.

Saturday, October 17, 2009

Jordan's New Sling






Here's a little post on my latest sewing project.
I wore Jordan in a sling exactly like this for more than 2 1/2 years since she couldn't walk much of the time. It was the best gift ever. Mine was made by Jenny Woodward who also jumped on the hospital gown ministry right away. Her blog is http://www.doctrineanddiapers.blogspot.com/ and you can see her projects under the craft link on her page.
I copied her pattern a year ago or so and made a smaller version for Reese Woodward and have since made another one for a neighbor, Cassidy and also matching slings for Jordan and her little girlfriend, Reagan (her 3rd birthday is Tuesday).
I used a coupon so each sling cost me less than $5.00!
Here's a picture of Reagan and Jordan

Here's Cassidy and then a picture of her birthday sling.

I'm so thankful to my mom who bought me my sewing machine - Thanks Mom!