My Breastfeeding Badges of Honor

Oops!

6:40:00 PM Posted In , , Edit This 1 Comment »
Things are looking a little crazy at the moment. The blog is in a bit of upheaval. Please excuse it all. It occured to me the other day as I was organizing my files that my photos of Rob and the boys were outdated. Well Elliott Richard's and Emmett John's were from Christmas time but honestly they were just placeholders until I could find some that I truely liked. You're all probably wondering who the heck "Henry James" is...I need to post about him. It's coming. With a few other posts I'm working on. For now, just know that things that appear off kilter but I'm working it. =)

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What *IS* the language of Emmett John?!

9:14:00 PM Posted In , , , , , , , , , , , , , , , Edit This 3 Comments »



I took Mr. Emmett John to his Audiologist appointment on the 20th, whatever day that was. I can't remember anymore. You'd think I would remember that day. I feel like I should. I feel as if it should be etched into my brain forever:

Wednesday, January 20th, 2010 @ 3:00pm: Emmett John's world officially closed off forever.

Emmett doesn't like to have his ears messed with. Even to have them checked by Dr. H for a run of the mill ear infection I have to hold his hands down with one hand while I hold his head against my chest with the other hand. He hates it. So when she tried to put the little things in his ears to see if his eardrums even moved, forget it. The different and smaller little things to actually test whether or not he can hear sounds, not a snowballs chance. In stead she tried a rather crude method.

Emmett John sat on my lap with a little round tub of rubber beads to play with. The Audiologist Assistant (?) sat across from us to watch Emmett's face for startle reflexes and various reactions. The Audiologist left the walk-in-freezer...er sound-proof room and went on the other side of the little window. Then she began calling out to Emmett John through the speakers. She started at a whisper and increased her volume until she finished up screaming. He didn't flinch. He didn't move, startle. Nothing.

It took literally everything I had in me - everything good and bad and indifferent - to not react and accidentally tip him off.

Then when he wasn't responding at all. It took all those things not to tip him off and not to fall apart.

I was beyond devstated. My baby couldn't hear her. She moved on to the beeps because A) she has to and B) sometimes it seems as if he can hear loud, high-pitched cell phone ringtones. She began at a whisper and slowly increased the volume with the lower tones. Nothing doing. Then she switched to the high pitched tones. Again with the whisper slowly increasing the volume. Nothing doing. At one point she turned these monkey noise making toys on that sat in boxes above the speakers. He reacted to those and we all went wild. Then she said she wasn't comfortable marking that he reacted to the noise because he could have seen the lights out of the corners of his eyes.

My heart broke again.

In the end, she said that if Dr. H had not already been recommending the ABR she would insist upon it. His OAE had not shown any clear results expect that she felt comfortable saying that he is at least suffering from moderate hearing loss. She said that he cannot hear at 45 decibles, which is human voice. She then went on to explain that there is a very slim chance that he can hear at 65 decibles and above, which is a screaming human voice. However, she is absolutely comfortable saying that "he cannot hear at 45 decibles and suffers from at least moderate hearing loss".

I've been working on teaching myself basic American Sign Language with a website so that I can try and communicate with him in some way. He has to have something. I can't imagine what it must be like to not be able to hear anyone. Not be able to convey your needs to anyone. It's no wonder he's been walking about pinching and hitting and all out screaming for ages now. Rob and I spoke to Dr. H on Wednesday at Gavin's 10 year check-up and we also feel certain that nearly all the appointments where I drug Emmett John in to the office saying "He's fussy, won't sleep, just screams and pulls at his ears." he was pulling at his ears because he was likely losing his hearing and we didn't know it. If only I had followed my mother's instincts all those months ago! I wonder what may have turned out differently.

Anyhow I can't do anything about it now. What I can do, what I am doing is learning ASL so that I can communicate with Emmett John, at least until he picks it up as well. I'm not very good and I don't know very many signs. Emmett John seems tickled pink that he can understand though. He signed his first word the other night, Daddy, which was HUGE! I'm teaching Rob what I learn as I go along. I try and teach Gavin and Elliott Richard, too. Gavin wants to learn as much as I have to teach him. Elliott Richard flat out refuses to learn. He just keeps yelling at Emmett John in stead.

It seems that every time we start to find some semblance of normal around here...I don't know why we try.

We can't get in for his ABR test until March. Dr. H tried to convey to the lady that he would like Emmett John's case expedited. She got snippy and told him that the 25 children ahead of Emmett John would like their cases expedited as well but it doesn't work that way. Emmett John will just have to wait. Dr. H then asked that Emmett John be put on a cancelation list and she tried to make it sound all horrible - like I would decline because of short notice or something. Clearly she doesn't know me - well, obviously but you get my point. So now I have to wait for her to get off her high horse and call me with an appointment because she wouldn't make it with Dr. H's office because "that's not how I do things!" ARGH! Like things aren't complicated enough? I need a chick on a power trip?!

This whole situation is just making me sick. My fibro meds aren't nearly as effective any more. I'm having migraines all the time. It's just crazy. And because I'm the ASL one in the house right now, Emmett John is my shaddow. Never mind Henry, my new dog, whom you know nothing about, thinks that being supportive translates to being under foot where ever I go. Elliott Richard wakes up at 3am lately. Heck, even Emmett John has been waking up at 3am for some God awful reason! I don't know why he does it because unlike Elliott Richard, he's clearly not bright-eyed and bushy-tailed and ready to go. He's just a great big fuss pot looking to make my life a living Hell - totally uncool.

My Mom is actually worried that I'm going to snap under all of the stress I'm under right now. I'm not sure if I should feel flattered that she cares so much. Shocked because she's managed to see through my facade so quickly when I've known other far longer and they're still in the dark. Or offened because she seems to think me so fragile. (lol)

Oh well, that's all we know on the Emmett John front. I didn't intend for it to be so long. Sorry about that. Oh, and by the way, if I ever refer to him as MJ it's just a carry over from signing. We've found that MJ is easier for everyone to sign (especially quickly for some of us) than EJ. So just make a mental note: MJ = Emmett John. =)


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Speaking the Language of Mr. Emmett John ~ Round 2

5:11:00 PM Posted In , , , , , , , , , , Edit This 1 Comment »


I don't know where to begin.

Yesterday I took Mr. Emmett John for his 18 month well-baby check-up with Dr. H. Tomorrow I will take him to the Audiologist to have his hearing tested. Physically, he's doing well. He isn't sick. Motor skills are right on track. He's still channeling Jack-Jack, which is absolutely exhausting. I honestly don't know how he does it. One minute he's right next to you then he's gone and there are 6 of him everywhere! On the bright side, his constant movement doesn't seem to be having any effect on his growth...

The Stats

Head Circ: 48.8cm (75%)

Length: 35.25in (98%)
Weight: 26lb 1oz (41%)

I spoke with Dr. H about my growing concerns about Emmett John's lack of language. He doesn't talk, period. He babbles, which basically means he makes the noises that don't pertain to anything. For Emmett John, MaMa doesn't hold any signifigance for him towards me. Neither does DaDa, BaBa or any of the rest of them. He just says them.

He doesn't seem to hear us either. Our house is set up in a circle - front room (living room), hallway, kitchen, dinning room - all in a circle. The other night Emmett John was sitting on the couch in the front room and I snuck around so I was about 2 feet behind him then I clapped. I clapped so hard my hands instantly turned red and I moved Emmett John's hair. He didn't even move. He didn't startle, flinch or anything else. We call out to him from across the room and he doesn't respond. Loud noises, quiet noises...it doesn't matter because he doesn't seem to hear any of them. The only ones that he sometimes seems to hear are high pitched cell phones.

I mentioned his complete lack of a startle reflex to Dr. H when Emmett John was about 5 months old. At the time though, he had so many other things going on that we needed to figure out that it was lost in the shuffle. Plus his hearing test at the hospital when he was born so Dr. H felt that the "wait and see" approach was probably best. I allowed myself to be poo-pooed into silence and ignored my mother's instinct. Here we are 13 months later.

Tomorrow we are going to the Audiologist for his first hearing test, the OAE. It's the regular hearing test to see if he can hear at all. After that Dr. H has referred him to the local children's hospital for the sedation hearing test, the ABR. He is also referring us to Help Me Grow for early intervention. Help Me Grow will help us to get started with Speech Therapy, Sign Language classes so that we can communicate until we find out what is going on and even there after. He's also referring us to Gavin's Developmental Neurologist so that he can be evaluated for Autism.

Dr. H said that Autism is on the bottom of his possibilities list; however, with the family history via Gavin and the significant speech delay he wants to be sure that all of the bases are covered. That way if he does happen to be Autistic we have early intervention in place, whereas Gavin was unable to benefit from those services. I agree with Dr. H, I don't think that he's Autistic. I think he's deaf. However, I will feel better knowing. Especially if the hearing tests come out a-okay.

I'm not going to lie here guys, I'm terrified for my baby.

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What's 1 more?

12:27:00 PM Edit This 2 Comments »
Gavin has been a complete and total champ today. I wish I knew more about hearts. How they work. What a heart echo is *supposed* to look like. What a 12 lead EKG is *supposed* to look like. I wish I knew more about Marfan Syndrome. Does he really need another "Syndrome" on top of everything else?!?! How is that even fair?!?! I did some reading about Marfan Syndrome the other night. I stopped after reading that until recently the average life expectancy for a patient with Marfan's Syndrome was 32 years old. I wanted to run away when we told the nurse about the *Deme's genetic aortic dissections and the first thing she said was, "Ah, undiagnosed Marfan's Syndrome." *And she wrote it in his chart!!!* I don't want it in his chart! I don't want him to have another syndrome! So far today he's had an EKG and an Echocardiogram. I couldn't tell anything about about either test while they happened so everything looked bad and very horrible to me. So I stopped watching.
Elizabeth Gorski

"My heart's having a meltdown." (Also titled PLEASE PRAY!)

9:54:00 AM Edit This 1 Comment »
We are on our way to the pediatric cardiologist with Gavin. We've recently learned that his biological paternal grandfather and his biological paternal aunt both passed away of dissecting aortic anueisms (sorry about the spelling and lack of links I'm on the road), which is genetic. Gavin's heart is already special because its flipped and I forget what's that called at the moment. So now we're on our way to pediatric cardiologist - who got us in today during a phone call Monday morning if that gives you any indication how serious this potentially could be.

Please pray.

PS The title is how Gavin describes his heart pain. I thought it was given the seriousness of the situation. I wanted to remember it.
Elizabeth Gorski

Tuesday Toot

10:19:00 PM Posted In , , , , , , , Edit This 0 Comments »
Two of Gavin's major doctor appointments down.

Of course, that's not saying anything about the rest of the month. Let's just not go there right now, shall we?

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I'm done.

2:42:00 PM Posted In , , , Edit This 1 Comment »
I'm done being sick.
I'm done being the downfall of our household.
I'm done being the reason nothing gets done.
I'm done being the reason everything falls apart.
I'm done being treated disrespectfully.
I'm done listening to how my illness(s) are the reason nothing gets done.
I'm done getting yelled at for over-doing it.
I'm done getting yelled at for not helping.
I'm done being treated like a second class citizen in my own home.
I'm done.


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How much is "too much"?

2:40:00 PM Posted In , , , Edit This 0 Comments »
I have always been a journal-er. I've had a diary since I was 8 years old. I'm not one to necessarily write every single day. There have been times when I have gone for weeks and even months without writing. The more my children seem to mulitply and the older they get, the more this holds true. I've said it before and I'll likely say it again, I prefer my pen and paper journals to the blog. I love the fact that the blog reaches people. Whereas my journals simply sit unread. At the same time I love that my journals sit unread. I love that they are written in my handwriting, which will help serve as a window into my thoughts should my boys ever decide to read them. I also love that no one reads my pen and paper journals. I can write whatever is going on and not have to worry about grammar or spelling or hurting feelings or being misunderstood. It's my space. Plain and simple. So my question is this: How much is too much?


There are some things going on at the moment. Some of you are aware of them. Most of you are not. (Thank you to those of you who have been a huge help during all of it.) If I am being honest with myself, part of me wants to blog about these things. Part of me does not.

Ah...true love...

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