Thursday, August 16, 2007

Some days it's hard to be a Mom.

After another trip to the Audiologist with Baby J, today hasn't started off well for us.

Back when I wrote this, we were looking at a mild deficiency, a hearing loss at 4000 htz (higher frequency) on Baby J's left ear.

Today the Audiologist is concerned because he's showing the same deficiency in his right ear. A change. A detrimental change.

I'm trying hard not to, but can I tell you that I am FREAKING out here? My head is spinning with questions - 'why is this happening?', 'what is causing it?, 'is it going to get worse?', 'is it going to get better?', 'is it just going to stay the same?' - questions that may be answered by an ENT specialist. A specialist that the Audiologist recommended we see when she last tested J in May.

Through a series of communication snafus we have only just managed to schedule his appointment with the Pediatric ENT specialist for next week. Three months since his last appointment and we're only getting around to it now.

Complacent in my 'it's only a minor issue' attitude, lulled into a sense of security by the Pediatrician and the Audiologist herself who claimed that a moderate loss on one specific frequency is nothing to be very concerned about - he'll probably do just fine, I didn't stay on top of the evidently incompetent support staff at the pediatrician's office, and so all these weeks went by without me questioning why they hadn't scheduled the ENT appointment for us. Maybe I just wanted to fool myself that he was fine, we'd get to it soon enough, and he'd turn out to be fine.

Procrastination has bitten me in the ass and I want to smack myself because this time it involves my son's health and that's a bloody serious thing for me to be so damn complacent about.

Did you know that hearing loss is the number 1 birth defect in the USA? So I'm told by the Audiologist. And my son has it - a defect. I hate medical terms. Defect? He's not defective! He's my beautiful, happy, loving, baby boy!

After telling me she didn't like the readings she was getting in the right ear, and recommending that we have him undergo another sedated ABR test (he'll be put to sleep so they can monitor brain response to auditory stimuli - for the third time!), the Audiologist looks at me and says,

'Mommy, I don't want you to be real worried about this'

WHAT?

You tell me that his hearing is now affected in his right ear - which was perfect up until now - and my mind is racing wondering if he's going to have progressive hearing loss, I feel physically sick to my stomach at the possible scenarios, and I am afraid, scared of what is unknown about what's going on with him and you tell me not to WORRY?

Sorry, I haven't mastered that particular skill yet - he's 10 months old - I will worry every waking moment and then some!

We see this ENT guy next week - for tests, examinations, head x-rays and blood work. More crap and procedures to put him through. We will also talk about the genetics of it all, apparently. Confused about the genetics element I asked the Audiologist was this just to determine family history (which we've given, in detail and there is no significant family history of hearing loss in either family!), is it for genetic counseling? She responded and said no, that it was to determine if he has a 'syndrome', of which hearing loss is only one element. Kids with these 'syndromes' can have eyesight problems, kidney problems, other physical issues - I think I wanted to throw up right there - I think I still might.

My husband is telling me to relax and wait to see what Monday brings. To think positive thoughts and not necessarily focus on all the potential negatives. It's hard - again it's because I can't stand not knowing - I need information, and while I have learned my lesson the hard way in the past that searching the internet for this information is a BAD idea - I really, really want to - I want to know, now!

More than all of that, I just want someone to tell me that he'll be alright - that it'll all be just fine.

Nobody can.

20 comments:

Feener said...

he will be alright and whatever you guys have to deal with you will !! i am sorry you have to go through this, i think being very proactive and second guessing EVERY doctor is to your advantage. my friend's son was not talking and he was almost 2, the dr. told her NO BIG DEAL, finally she went to ent herlself and he had HUGE tonsils, they took them out and he won't stop talking !!! she was proactive on her own.

Kimberly said...

Oh Annie, I'm so sorry! And I want to smack the people telling you not to worry and to relax. You're a MOM, for goodness sakes. They're essentially telling you to take off your Mom-hat for awhile, and we all know that's attatched with super glue.

Do whatever you need to to deal with this. Play relaxing music. Work so hard you don't think about it. Freak out and research it for hours and hours on the internet.

However you react, you're reacting that way because you're a damn good mom who loves her son dearly.

If it's okay, I'll be praying for him, and you, and your whole family. ~hugs~

Absolutely Bananas said...

Oh, I'm so sorry! What a nightmare. Hang in there.

Megan/ Velveteen Mind said...

Annie, damn it. Howsa bout some Hail Marys? I'm sure there is some special Saint of the Ears I can get the hook-up from.

There's nothing to say other than hang in there until you know more.

And you are a good mother.

Oh, The Joys said...

I am sure it is impossible - the waiting.

Thinking of you...
OTJ

pinks & blues girls said...

Oh, I'm so sorry you have to go through this. I hate that word - defect - so much.

Thinking of you and your little guy.

Jane, P&B Girls

~JJ! said...

Oh Sweetie. I'm sorry.

I know worrying is what us moms do best.

I'll wait with you.

Hold your hand and wait.

I send you hugs.

Brillig said...

Doc tells you not to worry???? Like, you can just turn that off? Ohhh, so annoying. Because then you feel guilty because you're worrying when the doctor told you not to worry.

This is so much to through. Hugs, kisses, thoughts, prayers being sent your way.

Jennifer aka Binky Bitch said...

I hate it when a doctor or authority person tells you not to worry! As if!

I'm so sorry. It sounds very scary as a mom.

I'm thinking of you and your perfect baby boy (who's NOT defective.)

andi said...

I wanted to say exactly what Jennifer said...

I'm so sorry and you're in my thoughts.

Jessica said...

You all are in my thoughts and prayers. And its a Mother's Right to worry as much as she wants, so don't listen to anyone who tells you otherwise! I hope all turns out well with your baby boy!

Pinks & Blues Girls said...

Oh Annie... I am so sorry about your day! I can only imagine how worried you are... and the nerve of her telling you not to worry!? Does she have kids!!?? YOu are such a loving mom... and please know that you have friends out here thinking about you and Baby J. I know it's probably impossible to do this... but try and get sometime to yourself to just relax and be. I know it's easier said then done, but I also know what it's like being a mommy and being worried about your baby... and getting a cry or a yell or a bath or a drive alone... sometimes is the best remedy!
Please please please keep us updated on J!!
xo,
Audrey

slackermommy said...

I know how you feel. The not knowing is the hardest part. Finding out that our children who we imagined would be perfect have a defect is such a blow. Once you know for sure what you are dealing with you will feel so much better. It will be okay. He's still your perfect little gift from God but with an issue that needs extra special attention. My oldest has CAPD, ADHD, OCD, anxiety and Tourette's Syndrome. I knew for years before the diagnosis that something wasn't right. I would watch my beautiful daughter contort her face and do strange things and think "My God, my daughter is a freak. She's going to be made fun of. Her life will be so hard." But once I knew what we were dealing with I felt better and it's been okay. Some days are hard but my love for her is so great that I would walk to the ends of the earth to make sure she doesn't feel "defective". It's our cross to bear and we are making the best of it.

Hopefully your son's doctors are being overly cautious and worrying you for nothing. It's a sue happy world so they have to cover all their bases. Hearing tests weren't mandatory when my first 3 kids were born. If I had my son tested I'm guessing he would have had results similar to your sons. He flunked his tympanogram until he was 4 because he had so much fluid and wax in his ears. He has severe asthma and enlarged tonsils. Sometimes he has hearing loss with colds. It's very likely your sons hearing loss is due to something that can be remedied and not due to some syndrome or progressive hearing loss. As hard as it is try not to freak out just yet. Get all your test results and info first. There's a good chance that it won't be as bad as you think. And if it is you will get through it. You think you won't but a parents love is so strong that something kicks in just when we need it.

All my best to you.

shauna said...

Oh, I'm such a worry-wart by nature so I hate it when anyone tells me not to worry. Especially when it's a mom issue--impossible. I'll be thinking of you, wishing for the absolute best!

Flamenco Mom said...

Annie, I'm so sorry! I hate when doctors tell me not to worry--it just makes me worry more (as if I didn't do enough of that already). You're a good mom; don't ever think otherwise. I'll be thinking of you and Baby J.

Sarah said...

Will be thinking of you as you WAIT-which totally sucks. Keep us posted, please.

Pinks & Blues said...

You have endless support and love here in this blog world. Do all of the research you need to do. See all of the doctors you need to see. Ask all of the questions you need to ask. Say all of the prayers you need to say. Your great love for your baby darling will get both of you through this tough time. And please keep us all posted.

Sharon - Pinks & Blues

What Works For Us said...

I'd be freaking out too (what Mom wouldn't). But you will all get through this.

moodswingingmommy said...

I'm so sorry you're going through this Annie! Don't doctors know that when they tell us not to worry, it makes us worry more?

Your sweet little boy is perfect, and you will get through this! Try to keep yourself busy so the time will seem to fly by between now and the appointment. Vent away if you have to. We're here for you.

Iota said...

Somebody once said "when you have a child, you have your heart walking round outside your body for the rest of your life". Sorry you are having this anxiety, and you can see from the comments how much we are all rooting for you and littl'un.