Wednesday, April 7, 2010


As you can imagine, 9 weeks in the NICU, over a dozen surgeries, weekly visits to TCH (sometimes bi-weekly or even tri-weekly), meds, home health supplies, special formula and more has been extremely expensive. We were blessed to receive Medicaid in February of 2009 through the MDCP (Rider 28) program. Since then, everything "you" related has been covered 100%. The 8 months preceding that have put a huge dent in our pocketbook. Our insurance was privately financed by the owner of Daddy's company, and covered close to a million dollars of your medical bills. Still, there was much we had to self pay. We worked diligently to pay our portion of any expenses, and additionally put over $10,000 towards different creditors throughout 2009. Our hope was to be free of medical debt by 2010. Unfortunately, you were too much for our insurance company to handle, and that coupled with the death of the company’s owner forced the insurance company into bankruptcy in August of 2009. We were able to be covered under BCBS, however, many of the previously unpaid claims fell to us. Next week a committee at Texas Children's is meeting to decide what portion of a $37,000 debt we will be held accountable for. To help our case, I wrote a letter explaining the circumstances and asking for debt forgiveness. The first two paragraphs sum up your current medical situation quite well, so I thought I would post them here.

"Audrey arrived in June of 2008 and surprised us with her medical condition. After a perfect pregnancy, we induced her at 41 weeks and at first sight we knew something was wrong. She was diagnosed at 6 weeks with Smith-Lemli-Opitz Syndrome (SLOS). An autosomal recessive disorder, she basically cannot convert 7-DHC into a usable form of cholesterol. I am in contact with many other families affected by SLOS, and of the several dozen other children I know, Audrey is by far the most severe. Cataracts, ptosis, and glaucoma have left her blind in one eye, and we are uncertain of the vision in the other. We put contacts in daily and treat her as if she can see fine. Cleft palate, lack of suck-swallow reflex, extreme oral aversion, Hirschprung’s, small stomach, slow motility, and anal stenosis have resulted in a colostomy (reversed) , G-tube, chronic vomiting, reflux, and chronic constipation. At 22 months, Audrey is smaller than her 5 month old brother, weighing in at 14.5 lbs and 26 inches long. She is also less advanced than he is, barely able to support her head on her own, rarely reaching, never sitting, unable to bear weight. She was able to roll by 6 months, but over time regressed. We discovered in September of 2009 that she has a severe case of hydrocephalus, which explained a lot. We are working on getting back the skills she lost, but despite this set back, she has made progress in other areas—previous issues with PDA and ASD are gone, as is her high blood pressure. Her most developed area is communication; she can sign “mama” and “dada” and even say “mama”, although I am usually the only one to recognize it. Still, things continue to pop up such as sleep apnea and scoliosis, and we anticipate other obstacles such as major dental work, orthopedics, and behavioral issues. Many of these children receive a secondary diagnosis of autism, but so far we do not see any indicators of this.

Despite all her health problems, she is the sweetest, most loving, beautiful child. She is quick to give smiles and giggles, and would be content to cuddle all day. Since she can’t see well, if at all, sounds are what make her laugh. Right now some of her favorites are plastic bags, snapping, zippers, and her brother Liam. He makes all sorts of gross and hilarious noises. And when she smiles, it is so joyful and genuine. Anyone who meets her can’t help but love her. We wouldn’t trade her for the world."

You should know that I am not in the least bit worried about this issue. We strive to live debt free, but medical debt is something we can't control, and if we end up having to pay it, I am ok with that. You are worth it and so much more. It will take us some time, but God has been so good to always provide what we need and then some. I am confident that this will not be hanging over our heads for too long, no matter what the committee decides.


Meg said...


Every time I read your blog, I am flooded with pride and amazement. I am so inspired by the strength you and Brad have demonstrated, and I know that strength comes from the Lord. While I'm sure you wouldn't trade Audrey for the world, I know that what you've been through over the last two years has been anything but easy. I continue to pray for strength, grace, and God's provision for you, Brad, Audrey and Liam.

I'm sorry we didn't bump into you at JVBC this past Sunday as we did last Easter. I would have loved to have seen the kids and given you a hug.

Hugs and Prayers from Fort Worth,


Anonymous said...

Dearest Amber,

You are right not to worry over the debt.


Do not be surprised to have a large portion, if not all the debt forgiven.

Holding you, Brad, Audrey & Liam up daily in prayer