Live Speech Mapping

Big brother, Snort, helping entertain Little Guy.
The computer read-out. The white box represents speech sounds. We want the peaks (showing what he hears) to land within the white box.

Little Guy hanging out during the test.

Chewing the camera cord kept his hands busy and out of the way.

Deanna helped hold the receptor in just the right place for the test. Little Guy looks a little skeptical.

Little Guy loves playing with all the noise toys. This cochlear cowboy hat was his favorite.

A better view of the probe in his ear.

Michele watching the computer so she can use the data to correct his hearing aid programming.

Can you see the tiny wire there? Totally painless, but it does make him giggle with the tickly feeling it gives him.

Holding the receptor in place.

Little Guy can't have another ABR as frequently as we'd like because it's a huge undertaking to work around his breathing issues for the sedation. So, Michele uses live speech mapping to get an idea of how well his hearing aids are helping him.

She inserts tiny wires into his ear behind his hearing aid and then simply begins speaking or making sounds around him. The wires are attached to a computer, which provides us with a read-out of what he is hearing with his aids. From there, we are able to adjust his hearing aids accordingly. It is completely painless as you can see from the pictures, and it's a good alternative to frequent ABR testing.

Free Stuff For YOU!

My friend, Jami, is amazing at creating beautiful jewelry. I saved Little Guy's first pair of earmolds and had them sent to her. They were so tiny that I knew they'd be the perfect pendants for a necklace. Jami just finished making my necklace, and as soon as I pay for it and get it sent here, you can be sure I'll post pictures.

Why do I tell you this? Well, because Jami is sharing her talents with the rest of the world. She is giving away two pairs of her AMAZING earrings on her blog. Free. And you don't even have to do anything more than tell her what your favorite pair is.

Just go here. Good luck!!!!!

Beautiful Boy

Little Guy took off his canula. So, before putting it back on, I grabbed the camera and enjoyed the photo opportunity. Hope you enjoy it as much as I did.

Yucky Adhesive

I'm pleased to announce that Little Guy has been home for three full days now, and his sats have remained where they should be. I couldn't be happier about that.

One little problem we keep running into is the adhesive that holds his canula in place. If I use stuff that is really subtle, he pulls it right off and it tears up his skin horribly. The poor kid just bleeds and bleeds. You can see the sore spots on his face in the pictures. The stuff that is more gentle on his skin is just plain ugly. It's just big and clunky and yellowy-looking.

I've included pictures so you can see what I'm talking about. Without adhesive, he takes off his oxygen right away. Surely there is a solution out there somewhere. And, yes. I do realize his canula is a little bit low in these pics. That is yet another battle we fight daily.

Tomorrow, we will go with Ms. Kristi to conquor the challenge of setting his hearing aids to the maximum benefit. It's much easier to do with regular ABR testing. But, since he can't have the sedation for the test, we don't really know how far his hearing loss has progressed.

Such is life, I guess. Two steps forward and one step back. I can't complain. I think I'd be bored any other way.

Home Again

We finally got home yesterday. Just four days in the hospital this time. I'm relieved. I think. Little Guy had some blood work done that was "moderately abnormal" and may indicate some pulmonary hypertension. But, the echocardiogram is okay for now.

We stayed a couple more days after that to try and observe and understand why his sats go lowers. We really have no answers. It does look like maybe he's developing some asthma. It wouldn't be a huge shock since two of his brothers have asthma. But it would be a big frustration. Poor kid.

Sooooo, we are home. And we're thrilled about that. We are cautiously optimistic that all is well. In other very exciting news, all of our kids except Number One got their h1n1 vax's yesterday. Number One has to resolve his egg allergy before he can get the shot, so we're waiting for his blood test to come back.

Ahhhh, the joys of parenthood.

And, We're Back at Children's

Here are the latest updates on Little Guy. We are all in good spirits, and keeping fingers crossed that we can make this a brief stay.

Little Guy had an okay night. Sats remained okay, but he was working really hard to breathe by this morning. I was sort of glad that he did that because it showed the hospital staff what I was talking about. (Okay, so I'm just glad that it validated that I'm not crazy. Something really is wrong with him.) They did a deep suction thing on him by putting a tube down his nose and into his throat. He HATED it, but was breathing much better when it was done. He also is finally starting to cough up all this bright green stuff. (Hope you weren't eating when you read that.) And his lungs are super crackly. The dr. couldn't even hear his heart over all the crackles. That's the really good news because he was clear on Saturday. That means he's more than likely sick rather than it being a worsening of the quality of his lungs. In other words, this is probably not a permanent problem for him. YAY!!

His blood pressure readings are a little high. So, we're also working on understanding what that is all about. Lastly, we're watching for pulmonary hypertension. That is apparently a common side effect to kids with his kind of lung disease. Poor guy.

The original plan was to just be here last night and go home today. Now the goal is to be home at the end of the week. I think that's a great goal. I'd honestly rather stay here and find out what the deal is than be coming and going and never really knowing what is happening.

Another Weekend in the Hospital

I went to pick up Little Guy the other day after he'd been playing on the floor. His face looked dirty, so I tried washing it. Nope. Not dirty. Just gray. Yikes! I had the King check all of his tubing to be sure everything was hooked up correctly, and then had him bring me the oximeter. 84%!!! Not so good. We increased his oxygen, and that didn't help so we increased it some more. Finally we got his sats into a normal range and waited for the oncall dr. to call us back.

The doctor who returned our call was a total jerk. No seriously. He was just mean. He told me he had no idea what NEHI was, but that I had to bring Little Guy to him to be seen. I asked him to please consult with a doctor who did know what it was. Nope. He refused. What!??! You have no idea what my kid has, refuse to consult someone who does, but you want me to bring him to you???? I think not, my friend.

I got a hold of our regular doctor the next day just as he was starting to look a little bit gray again. She insisted that we go in right away to the ER and had them ready and waiting for us. Really, she wanted him to come by ambulance, but I just wasn't having it. I knew we'd be sitting I had oxygen with me and that I could get there quickly, so I took him myself. I don't think she liked that I did it that way, but it was what I felt was best. Imagine that! A mom thinking for herself a little bit about what is best for her child. Novel idea, right?

Anyway, we got right in and they observed him for a while. Of course is sats looked great while we were there. That's what always happens, isn't it? They admitted him for observation which made me cry for some reason. I think I was just overwhelmed and thinking it would be like last time when we were there for a full month. Plus, the doctor I understood to be on call was the one I'd spoken with the night before who was a pompass jerk and too full of himself to ask for help. WHY would I leave my baby with him??!?

As it turned out, an hour before he was admitted the shifts changed and the partner to our regular doctor came on call. She spoke to me personally as I tearfully explained my objection to letting him be admitted. Swine Flu all over the hospital for starters, but she told me she'd put him on the pulmonology unit which was much safer. I also told her how I felt about him being with some doctor who might not know what to do. Remember the one who wanted to send him home with me knowing CPR and nothing else? Yeah. She was a gem. What if I got someone like her again. Again, the doctor promised me it would be she herself who would be treating him.

With those promises in place, I consented to let him stay. We only wound up staying about 24 hours, so I made it home in time to trick or treat with my kids. and Little Guy got to show off his Superman costume. Can't complain about that, right?

So, we are home now. He has a new nurse who comes daily to check his vitals and a nurse who will be coming twice a week for eight hours at a time. I think the goal is for him to be sort of homebound now. We'll see how it works, and how long we get to be home for.

We've increased his oxygen to a full liter, and it's still a little bit iffy. *sigh* We shall see...

Brotherly Love

I never cease to be amazed to witness the dynamics that go on between siblings in our home. The most fascinating, I think, is Number One. He has very little tolerance or patience for The Beast most of the time. When he has those moments where he is willing to work with the Beast, though, it's like they're shining moments. He can be so loving and creative with his younger siblings.

The relationship he has with Little Guy is one of pure love. He speaks calmly to Little Guy, pays attention to the little details (like whether or not he's blue...okay, maybe that's a bigger detail), and is just generally protective of him. They have an unspoken love for each other.

Like with The Beast, when Number One decides to show his love, it's a shining moment. As you can see from the look on Little Guy's face, the feeling is deeply mutual.

Pumpkin Fun

Who says people with special needs can't have a great time?! Each Monday night, we have family night. Sometimes we play a silly game, sometimes we go somewhere fun, sometimes we just hang around and sing songs. It just all depends on the night (and the mood of the children). This week, we decorated pumpkins. We don't usually carve them because pumpkin guts make Number One break out in hives.

I got a variety of crafting supplies, and we went to town. Little Guy's is the one with the canula (it's a real canula that he isn't using anymore. I made the hearing aids out of pipe cleaners). Snort's is the one next to Little Guy's. I thought they came out pretty darn cute myself. :)

Look Who's Standing!

Well, okay. So, maybe he isn't standing totally by himself. But he is finally pulling himself up to a standing position on things. That is a big accomplishment. We're really excited to see that he is slowly building up more lung stamina. He used to be just too tired to work more than ten minutes or so without a good long nap. He worked the full hour with Ms. Kristi. It could be due to the fact that she completely adores him and he knows it. The fact is that he's got her wrapped around his adorable little finger. Just look at her in those pictures totally in love with him!! Ms. Kristi is his Deaf ed. teacher (and the Beast's, too!). We love when Ms. Kristi comes because she brings some great new toy every time. This week, it was some stuffed animals that sing and light up. I think Little Guy is totally in love with them...and perhaps with her. I don't know how I'll ever break it to him that she's taken.

We're hoping he can keep up the great work. He was diagnosed with RSV today, so we're watching him very carefully. So far, so good. And that's the way I hope to keep it.

You may have also noticed from the pictures that he has big tubing coming down. That's the corrugated tubing we bought and string his oxygen tubing through. It works great at preventing him from strangling himself, preventing siblings from twisting it, cats from chewing it, and well...let's just say it's been truly a life saver.