Get Reactive and Proactive!

FREE AFOs for Infant Stroke Survivor!

We have good news! Lily will get a new set of leg braces for FREE! How? Because I got reactive and angry and sent a complaint letter to the owner of the company. The brace and limb company that failed to give Lily the prescribed AFOs responded almost immediately to my letter of complaint. I mailed the letter last Monday and they were calling our physical therapist and us by Tuesday. The owner was extremely apologetic for the lack of attention given to our daughter and her needs. The owner wanted to make the situation right and scheduled Lily to be refitted the very next day! Her father took her to the appointment and Lily was casted and measured thoroughly. She will get a new set of articulating braces with derotation straps. Unfortunately we have to wait for another three weeks for them to be delivered, but it will be worth it. Lily will finally get what she needs.

There are a couple of lessons I learned through this experience with the help of a dear friend who also has a child with special needs. When my friend read my last blog post, she became concerned and gave me a call. Her call was exactly what the Lord knew I needed. It can be lonely being the parent of a child with special needs. Finding someone within your own community who is dealing with similar issues is rare, but fortunately God has placed someone in my life who “gets it”.

We discussed the quality of care my daughter receives through a free government program as well as the difference between such programs and privately contracted services. Currently Lily receives physical therapy through a government early-intervention service provided within our county of residence. Because of government regulations, the physical therapist is only allowed to work with Lily a certain number of hours within a week. And Lily does not qualify for occupation therapy under this agency’s regulations because of her age. In addition, I learned through my conversation with my friend that at the age of three, the early-intervention program is “done” with Lily. She will then transition to the school setting and will attend pre-school through the same agency. However, she will only get physical therapy if Lily qualifies for speech therapy. As I have already discussed in previous posts, Lily certainly has no trouble with verbal communication, so I doubt she will qualify. So what happens to Lily after the age of three? This will be our family’s responsibility.

My friend advised me to get Lily an evaluation by a private therapy provider. The private provider will give Lily the physical therapy and occupational therapy she NEEDS and not what she qualifies for under strict government regulations. It is also important that our family begin a long-term relationship with these therapists as it is likely she will need their help for years to come. While the government services are free, which is a plus, they are extremely limited and only temporary. Lily needs something consistent, proactive, complete, and enduring.

Our family is preparing for the additional cost of private therapy as it will be a financial commitment. We do have medical insurance, but there will be co-pays of around $60. While that might not sound like a lot to some, it is an additional monthly medical expense. However, we are certain our money will be well invested.

I am extremely grateful for my friend who is guiding me through this process of being a parent to a child with special needs. I am always surprised at how much I do not know about the ins and outs of therapy, insurance, and referrals. Everything is complicated, but I do know that Lily has no greater advocate and fan than her mother!

It Ain't Right!

The prescribed AFOs were not given and these ain't right!

It has been a loooong time since my last blog post and I greatly apologize. From the last time I posted up until about a week ago we have waited for Lily’s AFOs. And she has not walked, has had no desire to walk, until about a week ago. J But the minute we put the AFOs on her, she stood up and attempted walking. What a change in her we have seen! She seems to be getting the hang of this walking thing, but our experience with the brace and limb company have tested my patience and Christian attitude.

I am MAD because my AFOs just ain't right!

My husband and I recently used a local brace and limb company for Lily’s AFOs. The company came highly recommended by our physical therapist. She not only specifically requested we use a specific orthotist, but also prepared us for a custom fitting appointment in which our daughter would have to be casted and measured for her lower leg braces.

When we arrived at the office, the orthotist welcomed us and began to measure Lily’s foot. As he measured, we talked about the prescription physical therapist had sent over. I became concerned because he did not mention the “hinged AFO” phrase or the de-rotation straps my husband and I had discussed with the physical therapist. I immediately tried to call our PT to get clarification. While I waited for the physical therapist to call me back, I was bothered that the orthotist did not make a cast of Lily’s legs and feet nor did he measure her leg length as the PT had said. In fact, the whole office visit took about 5 minutes. The orthotist gave us little details about how the AFOs would look or function.  I wondered how he could give our daughter Lily custom fit and function AFOs with only a foot measurement. However, I did not question him as I considered him the professional. In the meantime, the PT called the orthotist directly and discussed with him that Lily’s braces were to have hinges, be custom fit for her, and include de-rotation adaptation.

Three weeks after Lily’s fitting, her AFOs were finally ready. When I reviewed them, they did not have hinges, de-rotation strap capabilities, and were not custom fit for her. The AFOs were much too long for her feet, missing a top Velcro strap, and ill-fitting around her ankles. My husband was told by the orthotist that the strap was left off so that the unhinged AFO would allow for a motion similar to what the hinged version would have provided. Upset, I called our PT and requested she review the AFOs the next day.

Upon assessment, the PT and myself felt that the orthotist had done a very poor job of meeting the needs of our daughter Lily. Instead of what was written on the prescription and discussed with the PT, Lily received “stock” AFOs that could have been ordered online by my husband and I. While I am certain the orthotist is a consummate professional, he failed to give our family the time and effort because of the age of our child, our inexperience, and the underestimated intelligence of our physical therapist to know the difference between custom-fit AFOs and “stock” AFOs.

Unfortunately, we are forced to use the AFOs because our insurance will not pay for another set of AFOs so soon after the delivery of the current ones. Overall, our experience with this orthotist and company has been unsatisfactory. This is disappointing as I am certain Lily will continue to need AFOs and we will eventually have to get the current ones replaced with ones that follow the therapists orders and prescription.

This situation is upsetting mostly because I feel like we had the wool pulled over our eyes. And the AFOs we have received are ok for the job, but they lack the capabilities the prescribed ones could have provided. Because our insurance won’t pay for a replacement so soon and because of how expensive they are, Lily will have to use these for now and she seems to be adapting well. Unfortunately we cannot fix her in-toeing problem right now because her AFOs do not have the de-rotation strap capability. Instead, we will have to use a special tape used by athletes and have to wait until the weather cools down a great deal as the tape is sticky and painful in the late summer heat.

Who would have thought that a company whose purpose is to help the disabled would take advantage of such a tiny patient needing their help? Today’s lesson parents: If your gut says it ain’t right, IT AIN’T RIGHT!