12.17.12 To Strive or To Finagle

I have spent several days stewing over a recent phone call I received from our feeding and respiratory home care company. The call forced me to again face the struggle between doing our best and doing the least. We can struggle to provide care for our daughter, asking for help when we cannot do it on our own or we can structure our income, cancel our insurance to have the most care provided possible. It sounds so obvious when I say it out loud. Clearly one would choose to be honest, to work hard, and to admit help is needed when it is too much. Right? Oddly though, that very help is sometimes only obtainable if we are unwilling to provide for ourselves.

Many, many families must face this same challenge with their disabled kids. For our family there have been two recent examples of this. First, we have now just managed to purchase private health insurance and because of this we are no longer eligible to receive financial assistance for home care supplies. Even though our insurance plan is high deductible and will not cover the supplies itself. In this odd situation, we find that we would receive more help, in fact the supplies would be fully covered, if we cancelled insurance. It would not only save us the cost of supplies (through home care the cost is nearly 3,000 per month), we would also be saved the insurance premium cost.

The other situation has been in regards to disability insurance/SSI. In order to receive ANY assistance with medical, therapy, feeding, diapering, travel, ect costs for Aimee, we would need to structure our income. Essentially chose to make as little as possible and live off of government assistance in all ways.

As I prepared to write an embittered post to you about "the system" that teaches us to connive for the most free provisions possible, another family gave us a cash gift. Our problems didn't instantaneously disappear, but the gift was like a token that made me realize there is a third choice. We don't have to strive to do as much as possible wearing ourselves thin in our struggle. We don't have to give in to the temptation to take as much assistance as we can possibly finagle to get. We instead can choose to do our part in work, to provide what we can, to receive gifts from strangers and friends (really from Heaven we know), and watch Aimee's needs continue to be miraculously met every day.

It may not sound much different from the outside, but the attitude of my heart makes it another choice altogether. Instead of crying (literally) and stressing about how we can make it all happen, we can choose to say, "Jesus, here is our need." How will He provide? Maybe He will use financial aid, maybe the bills will be paid miraculously by an unknown source, maybe He will show us another way to get supplies, maybe He will give Ed an extra job to make money...He has done all these things in the past. Whatever way He chooses this time, we can choose to look in His wonderful face and have joy in the knowledge that He will provide.

“That is why I tell you not to worry about everyday life—whether you have enough food and drink, or enough clothes to wear. Isn’t life more than food, and your body more than clothing? Look at the birds. They don’t plant or harvest or store food in barns, for your heavenly Father feeds them. And aren’t you far more valuable to him than they are? Can all your worries add a single moment to your life?
“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?
“So don’t worry about these things, saying, ‘What will we eat? What will we drink? What will we wear?’ These things dominate the thoughts of unbelievers, but your heavenly Father already knows all your needs. Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need.
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. (Matthew 6:25-34 NLT)

In other news, we have been very busy since we last spoke. Here is a little rundown of some activities:

-Audiology-
Caleb had another hearing exam to help us determine if Aimee's hearing impairment is linked to her overall condition or if it is a separate genetic issue. We were able to test 2 more pitches and he passed both well.
Aimee had her hearing aids fixed and is showing definite responsiveness in using them during her ABM therapy sessions.

-GI-
Aimee has continued to have trouble with reflux, so we changed her to a more serious medication. So far, we are seeing a lot of improvement.
The last several months we have struggled to get rid of a rash that would periodically surround her button and spread over her chest. The doctor is trying to treat it with anti-yeast cream to see if this will deter the spread.

-Nutrition-
Due to the problems with keeping meals down, Aimee's weight had dropped several pounds. Thankfully the nutritionist was very willing to wait and see how she does with reflux medications and did not push us to make any diet changes. We have been a little concerned that maybe she had developed an allergy to the formula that we occasionally use and that it was causing the reflux. The doctors felt that due to the significant cost increase of hypoallergenic formulas, it would be better to try eliminating trigger foods in our blended diet first and then make formula changes if necessary.

-School District-
We are beginning the process of rewriting Aimee's next IEP for the coming year.

-Opthalmology-
Aimee's post-op with opthalmology was last week and we finally got the stints removed from her tear ducts. Aimee has been so excited and happy since they removed the stints. Must have been so irritating for her. After reviewing symptoms and ct scans with the doctor though, it was determined that the procedure was a failure. The actual problem appears to be that the bottom openings of the ducts, which should allow drainage through the nostrils, are just barely open. She has very narrow nasal passages, partly due to the way her skull is growing disproportionately. We are first going to try using steroid sprays in her nostrils to see if we can reduce the size of surrounding tissues to relieve pressure on the openings. If after two months we don't feel this was successful, she will have tissue surgically removed and then they will inject steroids directing on site. All for those tiny little tear ducts!

-ABM-
The therapist in Bellevue has begun to incorporate some speech therapy into Aimee's lessons, which at this point looks like playing with her throat and tongue. We are excited to see her learn more in this area.