We had Elly’s post-op appointment on Thursday. Her throat is healing fine from her T/A but her perforated ear drums are not healing. The ENT will not consider repairing the ear drums until she is at least 4 - 6 years old. A hearing test showed her hearing at about 40 dB - clearly not adequate for speech/language or education.

Another hearing test today at Children’s Hospital reinforced last Thursdays VRA (Visual Reinforcement Audiometry). She had results ranging from 35-45 dB with most frequencies around 40 dB. This means hearing aides. They were not able to get individual ear results as Elly would not leave the inserts in. By the time they got around to that part of the test, she was done and tired of it all. They decided that they would prefer some individual ear information before setting hearing aides so we have scheduled her for a sedated ABR and ear mold prep next Monday. This will also give us more information as to whether or not her hearing loss is primarily conductive or mixed. (That info may also make a difference in funding) When the ear molds come back she will be fit with loaner hearing aides (through the U of MN) until we can figure out the funding. She can use the loaners for up to 6 months.

Funding is imporant, as a preliminary call to insurance on Friday indicated that we have no coverage for hearing aides………how can that be? We are busy filling out paperwork and looking into other potential options.

We were kind of taken by surprise, but want to provide her with what she needs to develop to her potential. We are shocked by the degree of loss that she has (I wouldn’t have guessed Moderate) and are bummed that she will need to undergo sedation again, but we are pleased that we know about this and have a chance to intervene. Hopefully, she can begin hearing things adequately for speech/language and educational purposes soon. I hope it won’t be difficult to get her to leave the hearing aides in. Keep us in your prayers.

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My dear friend Nicole from T21 online has decided to feature friends with Down syndrome on her blog All 4 My Gals during her weekly advocacy posts. This week she has chosen Elly and we are so honored. Nicole was one of my earliest inspirations as I was waiting for Elly to learn to nurse and more recently she has supported my blogging efforts. We have spoken on the phone and have had an online relationship since the beginning! I can’t wait to meet her in person some day. Nicole’s beautiful daughter, Tarenne, also has Down syndrome and her blog is a wonderful place where she is a fearless advocate. She honestly chronicles her love for all 4 of her daughters and her husband and is a wonderful Christain woman. I encourage you to visit her site and say “Hi”. Check out her post about Elly - here. Below are some gorgous pictures of Tarenne and Nicole!

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A week or so before mom and Jay went back home, mom shared that she was really sick of roller setting her hair. Now, I had actually become quite good at the task during her recovery from shoulder surgery but still I encouraged her, what girl doesn’t love a makeover?! We made an appointment with my stylist, Rhonda, and mom shared what she had in mind. Caring for this new straighter and shorter “doo” is definately something that she’ll need to adjust to after 80 years of rollers, but she looks great - don’t you think!!

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