Tuesday, August 6, 2013
An Explanation About The Need For Hearing Aids For Jackie / A Huge Blessing
Jackie needs hearing aids. We've actually known for a few years. We're not exactly sure about the cause of Jackie's hearing loss. It's very possible that it's related to her disability as vision and hearing issues seem to be a common problem among children who have periventricular leukomalacia (PVL). That's a mouthful, isn't it. What this means is that the white matter around the ventricles is dead. The most common cause of PVL is a stroke, either pre-natal or post-natal. I don't think we'll ever know the exact cause in Jackie's case.
During Jackie's very early years in the Early Intervention program, she was monitored in many different areas, including her hearing. She never seemed to be able to pass the hearing screenings and was eventually evaluated which showed a possible hearing loss. Jackie had an ABR (auditory brainstem response) performed at age 2 1/2. Due to her age and of course, being a toddler, she had to be sedated for this procedure. I was really hoping for answers that day but unfortunately, tests came back inconclusive, although showing some signs of hearing loss. It appears that Jackie experienced a rare phenomenon involving interference within her body whenever the technician tried to test above a certain frequency on Jackie's left ear. She continued to be monitored and again we were told that she more than likely needed hearing aids.
A few months after Jackie's third birthday, I noticed something weird going on with her eyes. It continued to get worse and then I realized that she was crossing her eyes as well. Her doctor screened her eyes with some sort of machine and was able to immediately detect that Jackie indeed had something going on with her vision. We were referred to a children's ophthalmologist who diagnosed Jackie with 2 different issues. One of those diagnosis was strabismus (crossing eyes). Jackie needed eyeglasses with a strong prescription for her left eye and a plain non-prescription lens for the right eye. At first, Jackie was compliant with wearing her glasses but because she had such a tiny nose with hardly any bridge, we had difficulty finding frames that would stay on her. After several months, Jackie became non-compliant with the glasses. I can't tell you how many pairs we went through, either because Jackie would damage them or lose them (purposely). I can actually laugh now about the many different ways that she came up with to make her glasses "disappear". There were many times they were stepped on because she would purposely leave them in somebody's path. One time, right after getting another new pair because the previous ones were broken (guess by whom), I noticed that Jackie's brand new pair wasn't on her face. When I asked Jackie about it, she denied, at first, that she knew where they were at. She finally received a threat, whereupon nonchalantly got up from where she was playing, sauntered into the kitchen area, reached under the table, and voila! She had hidden those things in a crevice underneath the tabletop. I would NEVER have thought to look there. I remember being angry but wanting to laugh at the same time at Jackie's cleverness. The non-compliance (and frustrations from me and Tim) continued for a few years. There was NO WAY that we were going to pay thousands for hearing aids when Jackie wouldn't even comply with her glasses. We tried patching with an over-the-eye patch, patching eye drops, rewards, discipline. Even the threat of eye surgery didn't scare Jackie into wearing her glasses. It was either her way or no way when it came to that. Of course, her left eye vision continued to get worse. I was so afraid that she would go blind in that eye. Then finally... finally! Jackie realized that she couldn't see out of her left eye and it was even starting to affect how she could see out of her right eye. Suddenly, Jackie was wearing her glasses nearly every day after she started 2nd grade. Finally, a breakthrough! She is so used to wearing her glasses now that she thinks she looks weird without them. And, thankfully, Jackie's latest vision appointment showed that there was a slight improvement in her affected eye which means that surgery is no longer a threat at this time.
With all of Jackie's other appointments, I had gotten behind on her follow-up appointments with the otolaryngologist and audiologist. We were finally able to get her caught up several months ago. At that appointment, the need for hearing aids was very clear. Jackie has a mild (right ear) and moderate (left ear) hearing loss. Now that Jackie has been wearing her glasses faithfully and with the fact that she would be entering 3rd grade within months, we agreed that we seriously needed to consider the hearing aids now. However, with the looming government sequester, we put the hearing aids on hold. At first, Jackie was cool about that because she really wasn't sure about wearing yet another thing that would draw attention to her. Over this past summer, it has become clear to us the need for these hearing aids as Jackie started to tell us that she wanted and would wear the hearing aids so that she could hear better.
You know the saying, "when it rains, it pours"? Well, we've had a few pressing needs come up all at once, it seems. Not only does Jackie need hearing aids, we're going to have to take her to the orthodontist sooner than later now as she has a tooth that has erupted in the wrong place and it's become very difficult for her to brush that area. The tooth is very high up and causing her that gingival area to become very sensitive. We all know how expensive orthodontia is. As if that's not enough, our washer and dryer are on the edge of dying. And I need an device that will help with my sleep apnea. That particular device also is not covered by insurance. So yeah, the needs are pouring in and I'm trying not to stress over it. As responsible as we are with our finances, all these expenses, in addition to all the various therapy appointments my children go to, are taking a toll on us, especially with the income drop during the furloughs. And now our TV is getting ready to die, too. (I actually hope that thing dies soon as I would so LOVE to get rid of TV and cable). My family is too addicted to it and I can live without it.
So back to the hearing aids. We have medical coverage but unfortunately, hearing aids are not covered at all on our policy (Tricare retired). They cost a few thousand dollars initially. And the costs will continue to add up over the years because as Jackie grows, she will need to have the molds replaced to fit her growing ear structures. It is not cheap for a child to have hearing aids. I have been made aware that there are organizations that will help provide for hearing aids but they involve donated, used aids. Lions Club is one such organization. If it was me who needed a new set (yes, I have hearing aids, too), I would go for that. I'm hesitant to do that for Jackie because I want to make sure that the hearing aids that she gets fit her appropriately and will stay on.
With this government sequester causing Tim's income to take a dive, I was looking forward to picking up more substitute teaching jobs after school starts back up and use that income to pay for the hearing aids. This past week, Jackie told me that she wanted to do a lemonade stand to help make money for the aids. Jackie was inspired by a neighbor's lemonade stand and she wanted to do the same thing. At first, I felt like she shouldn't be the one working for this need but then I realized that it would be a fun thing for her and a learning experience on top of that. I advertised the lemonade stand on Facebook for Jackie. We set it up this past Saturday morning and I was very pleased and almost wanted to cry at the show of support for Jackie. Thank you to all my friends (and strangers) who donated above and beyond what Jackie was asking for the items on her lemonade stand. Her friend who helped with the lemonade stand also donated a bunch of very nice clothes to sell in a yard sale. When I told Jackie how much she brought in that day, she had the biggest smile. That made me so happy for her. A couple of people have said that they are sending money to help pay for the hearing aids. The next day at church, Jackie was hugely blessed by somebody. Even though the card was signed "a friend", I have a suspicion who it is. I was dumbfounded and nearly in tears. We've never been blessed like that. I'm actually having a difficult time accepting such a large amount by one person. I mean, we're not poor but we do have more than the average amount of medical bills. We're not rich, either. However, this past week of blessings (including non-financial) have left me feeling rich. I feel so blessed that people care so much about Jackie and they want to make sure that my special girl has her needs met sooner than later.
A few people have asked if Jackie qualifies for any type of disability payment. Unfortunately (or perhaps fortunately?), Jackie does not qualify for one cent. About a year ago, after learning that several kids in Ben's Early Childhood class were getting disability payments for having a speech disorder (not even nearly as severe as Ben's), that made me wonder if my children would qualify for anything. So, I filed an application at the local social security office. Within a week, we were informed that my children did not qualify at all. The only way my children would qualify is if we deplete every single fund within our family and have less than $3000 in liquid assets. That includes my children's accounts! Well, that's just not going to happen. I will work two or three jobs before I allow that to happen. I wasn't expecting much but I was hoping that we could get just a small amount of help to pay for expenses that aren't covered by insurance. For example, equine therapy (horseback) has been highly recommended for Jackie but we cannot afford that, and all the free programs are full. We will soon have to start buying 2 sets of shoes in different sizes because Jackie's left foot is 2 1/2 sizes smaller than her right one. Nordstrom's does allow people to buy a pair with 2 different sizes but again, it's not exactly cheap there. The expenses for Jackie will continue to increase as she grows but Lord willing, we will make sure her needs are met.
Some people asked if Jackie can be treated at Shriner's hospital. The answer is yes but not for hearing aids. I don't know of any Shriner's hospital that fit hearing aids. The Shriner's hospital in our area treats orthopedically and we do have an application for Jackie to be evaluated there. Jackie has had 2 foot surgeries and because she is also at higher risk of hip dysplasia due to her position in my womb and being female, I'm pretty sure she would qualify for care there. I just need to get all the paperwork together and have all of her doctors submit their records.
I also received a couple of suggestions about organizations to check into, one of which is Audient Alliance. I never heard of that organization before but I am going to fill out their online application. I really appreciate the questions and suggestions that everyone had. We also very thankful to those who blessed Jackie so much this past weekend. As Jackie has gotten older, I have become much more open about Jackie's "disability" and her future concerns so I really do appreciate when somebody asks me about her. I also want to make it very clear that despite the CP, Jackie is a straight A student, she absolutely loves karate (another blessing as this is provided for free), and she is talented artistically and musically. Within recent years, after some bullying incidents, I have taught Jackie to be open about her CP when people ask why her feet are different sizes, why she limps, or even why she has a "big band-aid" on her arm. The latter is actually kinesiotape and Jackie gets so irritated when people ask about it. I'm still working on her with that one. But she still makes me so proud.