Little Guy and Snort have been struggling with their health lately. Around here, the allergens are bad and that always triggers Snort's asthma. Poor little Snort has been struggling with asthma, pneumonia, and allergies for the past week or two. Little Guy is a wheezy mess, too. That's never a good thing when you're doing all you can just to catch up with the "typical" kids. But, these guys are tough and amazing, and they're keeping up with the best of them.

Little Guy has really learned to jabber away. I imagine he's talking to the angels or trying to tell me what Heaven was like before he came here in a desperate effort not to forget what he experienced before he left the arms of a loving Heavenly Father to come to earth. Either way, he's smiling at something whenever he's awake. He gets his arms and legs flailing all over the place, and just coos and jabbers like it's going out of style. We couldn't be more proud of Little Guy. He's been nothing short of a gift straight from Heaven for us.

Snort is making progress, too. This past week, he's had a language explosion. He says Little Guy's name clear as day while he lovingly strokes Little Guy's head. I'll have to try to make a video of it because it's truly precious. As for his walking, well...I'm convinced that he'll be crawling to Kindergarten someday, but who's really counting? We're just calling ourselves blessed that he's improving in his health and language skills. One thing at a time, right?

Early Intervention Perfection

Just look at the way he looks at her with so much love in his eyes! Picture perfect!!

I've mentioned many times about what a wonderful resource I think Early Childhood Intervention is and can be. It has been a pivotal piece of the puzzle for us when it comes to helping the Beast, and really all of my four youngest children. The backbone behind a successful ECI experience is the service coordinator, the person who oversees all of the child's services.

We've had Jo since the Beast was just weeks old. We're very attached to her, and I'd like to think she's at least a little bit fond of us. I remember when the Beast turned three and aged out of services feeling like I'd lost a part of our family in a way. Jo was with us through all of the amazing and wonderful moments in the Beast's first three years. On the same token, she was with us holding our hands and drying our tears when things were at the lowest lows.

When Snort started having vision problems, Jo was the first person we called. I knew we needed ECI, and I wouldn't settle for any service coordinator but her. I know for a fact that she truly is one of the best in the country at what she does, and I always go out of my way to provide my children only the best. (And, I think she's about the best thing for me I can think of, too.) Just like with the Beast, she has been with us for all of Snorts highs and lows. And Pretty's. And now, she's with us while we work with Little Guy.

To understand why we love Jo so much, you really have to see the way my children look at her. It's like her heart can talk to their hearts, and they know she's safe and sincere and that she won't ever let them down. When she pulls up, Pretty squeels with delight and runs to open the door as fast as she can. Not that anyone can understand a word that Pretty says, but she immediately starts jabbering away telling Jo all about the important things in her life. Snort lights up, starts kicking his legs, and sometimes even laughs out loud when he sees her. He waits for her to sit on the floor so he can immediately climb into her lap, stroke her cheeks, and lay his head on her shoulder. He needs her to give her at least ten hugs in the first two minutes.

My kids all have so much going for them. They all have so much hope in terms of what they can be and do in life. They also have their struggles laid out before them. Whether it be speech, hearing, vision, walking, sensory, or any other issue, we know Jo isn't going to let them down. She speaks up for them. She asks questions. She makes sure their mother isn't too far off her rocker.

Why do I put all this out there? Well, for one, I don't think people in Jo's profession get nearly the credit they deserve. "Thanks" isn't something they hear all that often. Secondly, I don't think Jo should be the exception. In an ideal world, Jo and her bond with my children and family could be the norm. Just imagine the success rate that could be with a family who's ECI service coordinator took the time to just know and love their families the way Jo has for us. Imagine what it would be like if parents everywhere could be as empowered as we were because of Jo's skills and her willingness to share them with us. Just imagine the songs that Deaf children everywhere can sing if the people helping them find their voices from so early on were half as dedicated as Jo is for my children. Just imagine...

We've Finally Joined the Circus!

Well, we didn't really join the circus, but we got to enjoy it for one evening. Dr. Michele called and told us she was a sponsor for the Carson & Barnes Circus, and she offered us some tickets. Actually, she did better than that. She offered tickets to us, our babysitter, and our friends. It was awesome because we wouldn't have been able to haul five kids to the circus on our own without a little bit of help.

The night before the circus, she called to ask which show we were going to. I let her know which one, and she said "Oh, good because I've arranged for the Beast to ride the elephant in the arena". Wowza!!!! What a treat!!

So, off we went and we had such an amazing time. They let the Beast, Number One, Pretty, and me ride the elephant right after intermission, and the Beast was announced as a special guest of the show. He was very proud. Sadly, they don't allow pictures or video in the circus, so our shots aren't so hot. I'm disappointed because this was an amazingly fun time.

The Beast was particularly fond of Alex the Clown. He followed that guy around the whole time, and apparently made friends with him. He was crushed to learn that we couldn't bring Alex home with us, but I think he'll get over it with minimal therapy.

Number One was hungry. At least that's what he claimed the whole time. I did catch a glimpse of him grinning ear to ear with the contortionist and he was a bit starstruck by the daring young man on the flying trapeze.

Pretty was just excited to be there with her friends. She was impressed by all the lights and the loud music.

Snort wasn't sure what he thought of the whole thing. He was just glad to have a binky. (Thank goodness!!!) I think he also loved cuddling with Marlene.

Little Guy was a little overwhelmed with the loud music. Once I took his hearing aids out, he was a happy camper again. That, and he was particularly thrilled to be all cuddled up in a warm blankey where he could snuggle close to me.

No matter how many pictures we did or didn't get, we made some special memories. A special thanks to Dr. Michele and Deana at Allen Hearing Clinic for making our family feel so very loved.

The Wheels on the Bus Go Round and Round

The Beast was on a mainstream bus all year long. I think I've told you about this. The driver just couldn't deal with him. "He talks too much." "His voice is too loud." "Can you tell him to please stop talking on the bus?" Yeah. It just wasn't working for us. I was frustrated, and the driver was writing him up left and right for bad behavior. In the driver's defense, the Beast did resort to bad behavior to get the driver's attention and to show that he didn't like what was happening on the bus. The driver was right to be upset with the behaviors the Beast displayed later, but it was just silly to freak out about his voice being too loud or talking too much. It's a bus, for goodness sake!

Anyway, we went ahead and moved him to the special ed. bus when we had his ARD a couple weeks ago. What a difference!! The Beast is much happier now. His ride is twice (if not three times) as long as it was before, and he doesn't mind it in the least. The aid on the bus is so patient with him, the driver is much more tolerant of his constant talking, and the other kids on the bus can relate to him a little bit better.

I hated sucking it up and putting him "on the short bus", but I'm so glad I did. In the end, it's not what I want that matters most. It's what is best for my son. And, really what I want is to have him have the best.

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).

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?

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.

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.

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.

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...