I want to start by saying we are grateful for the many blessings in our lives. We are so thankful that Rachel has been healthy overall. The blessing of her life and that others wish they could hold their child again is not lost on me. That said, I’m weary.
Rachel inherited my seasonal allergies and her ENT’s and doctors have all commented on the fact that the mechanics of her ear structure are not as small as many individuals with Down syndrome. Still, her ear canals, Eustachian tubes and other ear mechanics are small and create some extra challenges. I don’t know what defines “chronic ear infections,” but I never thought of Rachel as having chronic ear infections. She would have a couple a year and has always responded well to antibiotics. She had two sets of tubes, one about the age of two years and another at bout four years. We still send Christmas cards to our ENT in Memphis, and we’ve been gone for seven years! I have a great story about him. The group he was in saw a lot of people with Down syndrome. I invited them to sponsor our Buddy Walk® because I believe those we buy from should buy from us! They became a mid-level sponsor and Rachel, fundrasier in training, always invited everyone to join her walk team. She invited Dr. D. He told her he would come. The night before the walk I had an email from him. Keep in mind, I was the chair of the walk and returning emails really wasn’t priority at midnight on walk day. I did always check for anything urgent. Also – keep in mind this was before we all had “smart phones” with our email on them. Dr. D’s email said, “I told Rachel I would be on her team but I can’t find the information about where to come or what to do. Can you get the information to me?” I decided this was a priority and responded. On walk day as we were getting organized for our team picture who do we see running to meet and yelling, “Rachel, I’m here!” Dr. D. Her trademark smile broke out. He hopped in the picture.
So I digressed but it was a good story. About three years ago, Rachel had some loss of hearing in her left ear. Her hearing had always been in the normal range. The culprit was a hole in her eardrum. Don’t know what caused it but her ENT (who we also love and send a Christmas card and some of his staff joined her walk team here) sent us to an otologic specialist for repair. It was determined that she needed a tympanoplasty and mastoidectomy. I sound really smart huh? Pretty standard procedures and should improve her hearing.
Standard unless the doctor finds skin growing on the back of your eardrum when he gets in there. Skin growing on the back of your ear drum ins not desirable and can in fact cause all kinds of issues including hearing loss. Dr. T had to go back in two more times to work on this skin regeneration issue and to rebuild the middle ear bones. These had deteriorated as a result of the skin tangles. I’m not a doctor so don’t hold me to the technical details here okay?
So back in October I blogged about Rachel and Her Ear Aid and it is a pretty good summary of this process. She has about 40% hearing loss in her left ear. However, no one – not us, not a teacher, not a friend – no one has ever noticed that she didn’t hear as well on the left side. The audiologist illustrated what she is actually hearing and it made an impact on me. She has figured out how to compensate. While the surgeries were supposed to improve her hearing they have not so she got a hearing aid. I will not digress on my rant about insurance paying for hearing aids in this blog because I don’t have the energy today but I will at some point.
She has been rocking along very well with her hearing aid. We went for a standard follow-up two weeks ago today, and I could tell by the way everyone was acting that something wasn’t exactly right. Seems Rachel’s hearing is worse in her left ear. This should not be the case. It should be holding steady and since it isn’t this indicates there is a mechanical problem. So when the doctor said she’s going to need another ear surgery, I was kind of any a fog. I am ordinarily a fairly composed and focused person. Rachel never cries at a doctor’s appointment but she burst into tears and I almost did. Her primary concern is that she was just cast in CYT’s Hairspray and one of the physical restrictions with her ear surgeries is no dancing. Primarily – no hip hop type dancing. For Rachel, this is a tragedy. The doctor knows this and he talked through it with her.
I have to tell you the news of this surgery threw me for a loop. This will be her fourth ear surgery in less than two years. I am sad for her. I feel bad for Rachel. She is a brave little trooper and always such a great little patient. There could be worse things. We are so fortunate to have good healthcare and that it is nothing worse than this. So I went through the guilt phase of knowing that I should be thankful and not having a pity party but sometimes you just need a little pity party. (Remember not to stay stuck there!)
We’re all ready. We had Christmas parties over the weekend.
We saw a Charlie Brown Christmas and spent the afternoon at the Crown Center yesterday.
We made and decorated Christmas cookies last night. We rearranged our annual Christmas outing so J-Lo and Mr. Mike are coming to us. She is sleeping because we have our first ever afternoon surgery date. Then, later today we are heading off to the surgery center for her outpatient procedure.
So yes, I am weary but I am also thankful. And I am going to try very hard to be as brave as Rachel.