Say What?

There is so much happening at Chez Hogan that I am eager to share with you - but blogging time continues to be at a premium. Mac gets a little less demanding of my time each day, but it seems that Lois is doing the opposite. She has been making some amazing progress lately, so the extra time and attention we've been giving her is apparently working. We're going to have to divide blog entries among the kids for the time being. Today we'll discuss Lois, and next time I'll let you know what the baby affectionately referred to as "Doodle" has been up to.

Let's start at the top of her head and discuss her hair.


No, let's not. It will only make my blood pressure go up. I think Lois's hair may just be a lost cause.


Instead, let's discuss her ears - a subject that has received quite a bit of attention here on the blog. Lois has had ongoing hearing issues since she arrived in the world. An ABR test reveals Lois doesn't have any nerve related hearing loss, but rather her hearing issues stem from the minuscule size of her ear canals, the amount of wax she produces which hopelessly clogs said tiny canals, and the fluid that is constantly present behind her ear drums. Two attempts have been made to insert tubes to help drain that fluid with no success. She has hearing tests every three months which reveal different results on different visits, but she has a well documented mild hearing loss in both ears. Can you imagine how frustrating this is for Lois's parents? Do you think it is a coincidence that Lois's weakest developmental area is receptive and expressive language? If you can't hear, how can you respond to a command? How do you learn to imitate sounds if you can't hear them? The medical professionals have acknowledged that Lois has a hearing problem - and yet there seems to be not a single thing we can do to mitigate it. In the past, different audiologists have mentioned hearing aids, bone conduction hearing aids, a drastic surgery that will drill out her ear canals to make them wider - but none of these options were ever pursued by our doctors despite our insistence that there has to be SOMETHING we can do. So instead, we've fallen into this routine of testing her hearing, letting the ENT pull out the wax, and wringing our hands while we wait for her ear canals to grow.


I was expressing some of this frustration to our infant educator, Miss Judy, and she recommended we see a new audiologist. Miss Judy has worked with this audiologist for years and trusts her implicitly - so off we went for yet another hearing test. In the past, I've been quite skeptical of Lois's hearing test results because determining if Lois is reacting to the sounds produced inside the booth is extremely subjective. She was often given credit for a reaction when I knew good and well Lois turned to the side not because she heard a sound but because she was admiring the light switches on the walls. This time, Miss Judy sat in the booth with Lois and silently indicated to the audiologist when she knew Lois was reacting to the sounds being produced. These results I trust, and not surprisingly, they are worse that the test results we had in the past. Keep in mind that the hearing testing they do with children at this age tests Lois's recognition that a sound was made. If you were standing outside my front door having a conversation with someone, I might be aware you were talking but unable to make out what you are saying. So although she recognizes that sounds are made, can she really decipher them? Or are they so muffled they are intelligible?

My frustration has reached an all time high. Last week Miss Judy read Lois a book and pointed out the kitty cats on each page. Every time Miss Judy said "kitty", Lois kissed the book. Interesting, don't you think? I think Lois can only hear the "k" sound at the beginning of the word and confused "kitty" with "kiss." Frustration is turning to desperation.


The audiologist who saw Lois last week called Miss Judy personally to report that she had spoken to one of the ENTs who work in her office about Lois's case. He wondered if Lois had ever had a CT scan to see the actual physiology of her ear canals. Uhhhh. No? He wondered if anyone had mentioned bone conduction hearing aids. Uhhhh. Yes - but that same person determined they would be detrimental in the long run. At this point I'm ready to bash some heads together. I'm learning that sometimes you have to temper your faith in the medical profession with a hearty dose of advocating for your child. I shouldn't have allowed her previous audiologists to tell me no. I should have pursued this more vigorously. Let's just add this to the top of the mommy guilt pile. *sigh

Lois is seeing Dr. R on Friday - the man who I hope will be the savior of Lois's hearing. I assume he will do a CT scan and try to determine if he thinks Lois has grown enough to try the myringotomy (tube surgery - isn't that a fancy word?) again. And if not, we WILL be getting some bone conduction hearing aids for Lois. This Momma aint messing around anymore.

News on the mac-a-doodle and the results of his two month photo shoot will be posted tomorrow. Hopefully. Fingers crossed. I'm going to do my best. But don't plan your day around it, alright?