Tuesday, March 31, 2009

Big Beautiful Brown Eyes

I've been saying for a while that I wanted to share what a beautiful boy Little Guy is. He was in rare form today, so I got the camera ready and started taking tons of pictures. He even graced me with his sweet voice long enough to record it for posterity. Would you just look at those eyes? Anyone who says children with hearing loss are missing out on something has never met this angel. He's practically perfect in every way. (At least his totally unbiased mother thinks so anyway).

Sunday, March 29, 2009

Little Guy's Monologues

Little Guy had Ms. Brazier over the other day for his Deaf Ed. visit. We really like her. She's laid back, and doesn't bat a lash at all the kids swinging from the ceilings and scaling the walls. She listens to what I have to say, is willing to find answers to the few questions I do have, and gives great feedback and information on the things I need to know.

This past week, she noticed that Little Guy is babbling a ton. I really should take some video snippets of it because it's just so darn cute. And he has the brightest brown eyes you've ever seen (not that I ever remember to take awake pictures of him). They just sparkle when he gets going on one of his monologues. He goes on and on and on talking about something. (I like to think he's talking with the angels that I just can't see, or maybe he's telling me what Heaven was like before he was born). We have no clue what he's saying, but he uses so many different tones and is really expressive with his body and eyes. It was great hearing Ms. Brazier mention how wonderful he's doing, and that it's just so unusual for a baby as deaf as he is to talk so well. We only hope he'll be like the Beast, and never stop babbling.

He's also starting to gain a little control over his body. He's holding his head up, enjoying tummy time, and has learned to hold his hands together in front of his chest. He almost looks like he's praying when he does it. Who can help but fall in love with something so perfect?

Sunday, March 22, 2009

Tubes, Tubes, Tubes

Snort and Little Guy both saw Dr. Peters this past Friday about their chronic ear infections. Snort hasn't ever seen him before, but our pediatrician wanted him looked at because he's had the same ear infection since January, even with every antibiotic in the book. Dr. Peters took one look and asked, "Is this kid one who has chronic upper respiratory problems?" YES!! Yes, he is!!! Then he asked me, "Does he also always have a sinus infection?". Again, YES!!! He took a swab of Snort's nose to have it tested for a resistant bacteria that could be causing so many problems for him. After that, he informed me that Snort would need tubes in his ears. Whew! What a relief!! I love a proactive dr.

After peeking at Snort, it was time to look at Little Guy. Not surpisingly, he still had the same fluid in his ears that he's had all along. Dr. Peters has done a little research and is confident that the Beast and Little Guy have something called Gushing Stapes Syndrome based on what he knows of the Beast's case and family history. Knowing that, and accounting for the fluid in Little Guy's ear, he decided that Little Guy was actually at an increased risk for meningitis. Yikes! So, he will also be getting tubes.

So, all in all, it was a great day. Both boys are scheduled for tubes to be put in together on the same day and will also have repeat ABR tests. Snort passed his last year, but it's time for another one. Little Guy is due for one, too.

We also stopped on the way home and got Little Guy's new earmolds. I know. I need to post a picture. They're Easter colors and oh-so-CUTE! I also got Little Guy a new binky that says My Mom Rocks. It is, of course, absolutely correct.

Friday, March 13, 2009

The Dreaded ARD

The Beast had his ARD yesterday. It was actually scheduled for last week, but his teacher was sick. I wasn't too worried about how it would go since he'll be attending Number One's school with an amazing administrative staff. Plus, I'd spoken with our Deaf Ed. teacher and the Beast's general ed. teacher ahead of time to get a feel for what sort of comments she'd have to add. I also went to Hands and Voices and downloaded their IEP form to help remind me of what I wanted to discuss. I highlighted the items that applied to the Beast and was on my way.

I'm pleased to say he'll be pretty much completely mainstreamed next year. He will be riding the sp.ed. bus because of some behavior issues his has on the bus. Other than that, though, he won't be "different" in any other ways. We're going to be playing situations like cafeteria, p.e., art, and music by ear to see what happens and how he does. We'll make modifications as needed from there for him. We are also having some testing done for IQ, OT, speech, etc. That will give us more ideas of what else he may need. He'll have his FM system, captioned programming, preferential seating, and time outs from academic listening.

I couldn't be more pleased with the way the ARD went. I felt listened to, and as if my opinion mattered. There was definately something to be said for being prepared and having done my research to begin with. Seeing that I came in prepared helped the professionals involved help me, I think.

So, there you go. The dreaded ARD wasn't so dreaded after all.

Thursday, March 5, 2009

Little Guy Had His First Deaf Ed. Appointment

We have a new Deaf Ed. teacher for now because the one assigned to Little Guy is on bed rest for a high risk pregnancy. We haven't actually met the one on bed rest, but I'm sure she will be wonderful once she does get to start working with us. Until then, I think I'm going to get along great with Ms. Kristy.

She was very opened to the fact that we don't really need help with going over the Texas Connect handbook or explanations about how hearing aids and cochlear implants work. She was excited to help us bring more sign language into the home, and was more than willing to work with Snort and Pretty to help them catch up on their signing. This is precisely what I needed. I needed someone to be willing to let me be in charge of my family. When she left, I was able to take a deep breath and feel really good about where things were going.

In all honesty, I had planned on recalling Little Guy's IFSP and setting him up for only monthly monitoring because I didn't want to waste my time (or the teacher's time for that matter). Instead, I think I'll keep her coming at least every other week just to keep us all motivated to keep working on our signing. There really is something to be said for professionals who really listen to what families are saying they need.

Monday, March 2, 2009

Little Guy's Forever Ear Infection

Little Guy has had an ear infection for more than a month straight now. Poor kid. He's been through two oral anti-biotics and a full round of shots. Still, his ears are yucky. He went and saw our ENT on Friday just to check on his ears. Still infected.

The plan for now is to just wait a few weeks and do nothing while we see if maybe they drain on their own. We'll see. I guess that's possible. The good thing is that he doesn't show any signs of pain from the infection, and he has no fever. He willingly wears his hearing aids, and the ENT says he can continue to do so. We'll take that for now.

He'll have his first Deaf Ed. appt. on Wednesday night. The teacher sounds nice enough, so we'll see how it goes. We're a little bit of a more difficult family to work with in some ways because we've already been through the program. We don't need to be told what a hearing aid is, how a cochlear implant works, what Deaf culture is like, etc. What we do need is to return to a feeling of "normal" in our home. It's been a while since theings have felt normal.

We also need to help reintroduce sign language to our home. The Beast is very oral, and only uses his sign when he needs to, so we've gotten a little rusty. I do look forward to the itinerant teacher bringing that back to us. We shall see how it all goes...