Who Need Tonsils and Adenoids Anyway?

Liam finally got his tonsils and adenoids out last week as well as getting new tubes in his ears. He ended up having to stay for two nights because he kept struggling to keep his oxygen levels up, and that kind of thing totally freaks doctors and nurses out. They come running and shove oxygen up your nose right away if you drop below 88% oxygen level at any point. So jumpy, aren't they? Lol!

So far, I'd say he's doing okay. He has been VERY irritable and tired, and spent a couple of days refusing to eat or drink. I was worried that he'd have to go back for IV fluids, but apparently I did a pretty good job keeping him hydrated. Shocking! We appear to finally be over that hump now, and look forward to seeing what having clear ears and no longer having them blocked by tonsils and adenoids does for hearing. The doctor suspects that we may have bought him 20-30 db of hearing. I'm a little skeptical of it being quite that high, but anything is possible, right?

Anyway, I will be sure to continue to update as we get further hearing results in and complete our follow-up visit with the doctor. For now, I'm just enjoying the fact that he is super cuddly because he doesn't feel that hot. He's usually running non-stop, so having him slow down just the tiniest bit is a little bit of a treat. I know. Delighting in my child's discomfort makes me some sort of Mean Mother of the Year. I'm okay with that. Snuggle time is worth it! And besides, who needs tonsils and adenoids anyway?

Two Steps Forward, One Step Back

I'm pleased to announce that CJ's hearing aid is back and seems to be helping him tremendously. Actually, we got it right after the New Year, but I haven't been so great about blogging. (Look at me doing a great job at catching up, though!) He was so very excited to get it just in time for snow because he could wear it sledding and not have to worry about his cochlear implant flying off as he whisked through the air at speeds upwards of at least 2 miles per hour.

His teacher and Deaf ed. instructor as well as his speech teacher all report that he is much more accurate in his hearing with his aid on. This is GREAT news, and I'm so delighted to hear that he's finally doing better and has hearing on both sides. Well, we think he has hearing on both sides now. So, having the hearing aid in and functioning represents the two steps forward. We're always grateful for two steps forward, right?

It wouldn't be life if there weren't a little opposition, though, so we must prepare ourselves for one step back. We took CJ today to his audiologist to make sure his aid was programmed to the best possibility capabilities and to check on the status of his processor. While he was very compliant, they never did get to test the aid. The audiologist ran a test called NRT (Neural Response Telemetry), which checks each electrode in the implant to be sure it is functioning correctly. Here is a better explanation of how it all works.

We have done a few tests before and it appeared that some of the electrodes might not have been working, but attributed it to the fact that not all 22 electrodes fit into his damaged cochlea. This time, though, it became very clear that only TWO of his 18 possible electrodes are working. TWO!?!? This is definitely a big fat UH OH! The audiologist was going to be meeting with our doctor today to determine what to do next. The plan is more than likely to do a CT Scan of his cochlea to see exactly what is going on. That's the only 100% accurate way to be sure what is happening, but the suspicion is that tissue has grown over some of them or perhaps nerve endings have died...or something like that. If that's the case (which we have a sneaky feeling it is), our only option is to remove the current implant and re-implant him.

The baffling thing is that he passed his hearing test as if it was all working. We think there is a chance the other 16 electrodes haven't been working for a LOOOOONG time, and he has learned to compensate for that. I remember him telling me over and over that it didn't work, and I would adjust his processor for him and he would tell me thank you and walk away. Apparently that wasn't quite enough.

So, we've taken one step back...maybe. I hate that he may have to endure this surgery AGAIN and be retrained to use an implant, but I'm grateful that technology is there to help him in the first place. And, even with one step back, two steps forward is still positive progress. We always love positive progress, right?

CJ Met a "Celebrity"

About a year ago, I got an e-mail from a complete stranger asking me if her friend could use my blog as a link for a project he was doing for an Eagle Scout project. I tend to go with the flow, and certainly didn't mind him using it. Shortly after that, I got an e-mail from the scout himself asking me more questions about myself and my family. He figured out that, like him, our family is Mormon. He told me more about himself, too.

David is a Deaf teen who used his Eagle Scout project to create a place where Deaf teens and families could come together to share stories, make friends, and support one another. The name of his site is deafteens.org, and it has really taken off.

Over the course of time, CJ was lucky enough to be able to visit with David via Skype and really enjoyed talking the poor guy's ear off. David, being the patient guy that he is, always listens intently to all that CJ has to say. In CJ's mind, David is something of a celebrity. After all, he is in his computer. That automatically makes him a celebrity, right?

Another interesting thing that has happened over the year is that we ended up moving to about 45 minutes from where David is. Byron and I met him last April when we came looking for homes, but the children weren't with us. CJ was very disappointed to hear that we'd "hung out with the dude that has a cochlear implant and lives in the computer".

Sunday night, CJ finally got his wish to meet David. We had the pleasure of being invited to his Court of Honor, and took all five kids with us. CJ walked in and was a little confused trying to put David's face to where he'd met him before. Then, all of a sudden, his whole face lit up as he announced "Hey! That's David C! He's my friend in the computer!! Do you think he has missed me and is excited to meet me?". Yes, CJ. I do think David was pleased to meet you. More importantly, we're so grateful to have David as a mentor and example for our children.

Congratulations on a job well-done, David! You are truly an inspiration to us all!!

Awww! I Feel So Loved!!

I've been so busy with the kidlets that I've been woefully neglectful to blogging. I'm back on the bandwagon now, though, and have LOTS and LOTS to say! Anyway, I came and logged in tonight only to discover that I'd been nominated as a good blogger. Who knew? At first I thought it was spam, but then I click on the link right here. I have no idea how it happened, but want to THANK YOU all for following and reading this blog. I hope it has been as helpful and HOPEful to my readers as it has been to me. I feel very loved and lucky today!

Building Trust with Liam's School.

Today was a different kind of day than I've had almost since we got here. While this new place has so many more resources than Texas ever had, I've still always felt somehow insignificant or less than capable here. In this place, everyone who comes in contact with Liam or CJ is a pro and I'm "just the mom". I've felt like Liam's teachers in particular thought of me as overwhelmed, unable to really meet his needs, or ignorant to how to work with him. Every time I would come away from a parent education meeting with him, I felt like I was doing something wrong and was failing him.

Things were starting to get a little better as I talked to the director of his school more and more, and she got a chance to know me a little better. I felt like I was kind of breaking through her walls and earning little bits of her respect. That was all well and good, but she wasn't the one who worked directly with Liam. I wanted his teachers to understand that I am a skilled, caring, well-educated and informed mom rather than that one mom who is running late all the time, has her kid in mismatched socks, and just doesn't appear to ever have it all togehter.

Today all that changed. I didn't work with the center director and instead worked with his one-on-one Deaf ed. teacher. What a difference!! We worked together with Liam and she instructed me on what to do with him. To my pleasant surprised, she felt like I was "a natural". I did confess to her that what she was asking me to do was very similar to what I did as an autism therapist, so it took no time to pick up right where I left off.

Working with Liam and sharing a little about my background opened up a dialog that I think we both needed. She needed to know more about Liam and his family; what life is really like here. She finally caught on that I had been feeling a little bit judged and I feel like she genuinely knows now that I really am working with him. She seemed to understand so much more once I laid it all out on the table and was clear about the changes in our lives here vs. Texas. Suddenly it was like her light bulb came on and she really understood me.

It's just one small step, but it was huge for me. I feel like I can trust Liam's team a little bit more now that I know they trust me a little bit more. It's amazing how far a little bit of honest communication can really go!

More Adventures in Liam Land

The great thing about raising kids is that each day is a new adventure. Lately it seems that most of my adventures have to do with poop. Poop under his fingernails, poop ground into my carpets, poop in his hair, poop smeared on the bottom of the bathtub, and occasionally even some poop in a diaper or two.

Luckily there has been more to our adventures than just poop. We got a snow day this past week, and all the kids got to try out sleds for the first time in their cute little lives. Other than the part where Liam fell face down into the snow and was too bundled up to be able to stand again, I think he really enjoyed it. He squealed with delight each time we'd go down the hill together.

Liam is also doing better and better (though not completely better) about wearing his hearing aids, too. I'm not sure what benefit he's getting from them right now, but I do know he's doing better. That alone is something to be excited about.

In other news, we finally have a date for him to get his tonsils and adenoids out and new tubes put into his ears. February 8th he's scheduled to get it all done, and then we can move on to monitoring his hearing so we can decide when and if we're going to get him a cochlear implant. It feels like time has sort of stood still for him the last few months, and at the same time it seems to have just flown by. It's crazy how life does that sometimes.

So there you have it. Poop, snow, and tubes are about all the adventures we've been having around here. It's not much to some, but it's life in general for us.

Liam Has His Person

When we first moved here, one of my major concerns was whether or not my children would fit in and feel loved and close to people like they did in Texas. Each of my kids had their own special "person" who loved them in a special way that was different from their peers. I don't think it's even so much that each one had someone who favored them, but maybe that's just what it was. More than anything, it was that they each had someone who loved and understood them unconditionally.

Aiden had Angela. CJ had quite a few people, but I think his heart really belonged to Jim. It still does for that matter. Rachel has Gabriella. They've been bonded since Rachel was about 6 days old. Drezden had Linda. He loves his Linda. He also had his Ms. Buffy or Buppy as he preferred to call her. All four of my oldest children had someone who was there for them when it mattered most and who I knew would be a lifelong friend for them. There was some comfort in knowing that they each had an adult mentor in their lives who loved and cherished them.

Liam had people who adored him, most especially Linda (Jim's wife), but she couldn't come with him and hold his hand and guide him through the difficult transition from TX where everyone in the ward knew and loved him to this new place with a big new ward and no one who really knew and understood him. Liam was the one who weighed most heavily on my heart when it came to really needing "his person" and not really having one here. While he does have his Kassidi, he still needed something a little more. I worried that that person wouldn't come or that they'd come too late.

His first few weeks of nursery at church were awful. He had a sweet and dedicated teacher, but she was extremely pregnant and the classroom was simply too small for the number of children in there. When Liam came in, he was all over the place. He was like a little tornado on two feet. There was nothing even remotely successful about those first weeks in nursery and I would come home and just cry every Sunday after church. I dreaded going. I knew we needed to be there, but I hated knowing that he was "that one kid" that every teacher dreads having show up. His teacher never showed any dislike for him and never said one unkind thing, but I know he was more than a little challenging for her.

About five weeks after moving here, the nursery was split and Liam was moved to the younger nursery along with about six other kids. His class had been cut more than in half AND they had their own space. That alone was a huge blessing. Still, there was something more profound that happened that week. Sister Meier was called to be one of his two nursery leaders.

I remember vividly my first impression of Debra. She seemed so poised and put together. And she smiled a lot. Really, a lot, but not the cheesy kind of smile that hurts your face at the end of the day. She has the kind of smile that shows a sort of contentment with life and a genuine joy in being where she happens to be in that moment. If you've ever seen that kind of smile, you know what I'm talking about. I had spoken a little bit with her in weeks previous to her being called to Liam's nursery because she was a substitute one Sunday. I'd been asked to be in there whenever he was there so that he could only terrorize half the children rather than all of them. She shared a little about her life and her family. She talked about how she loved being with the little ones since her youngest was twelve now. She'd home schooled all of her children and really loved being with them. I remember taking a huge sigh of relief when her name was read off as his new teacher because I knew she'd at least be able to tolerate him and maybe even enjoy him a little.

When I dropped him off in the new nursery that first Sunday, I went to climb over the gate so that I could stay with him like I'd been asked all the previous weeks. She stopped me and said she could handle it and would let me know if she needed me. I sat through all of Sunday School and Relief Society jerking my head to look toward the door every time it opened fully expecting her to bring him to me and ask him not to come back unless it was in hand cuffs. She never came. I went to pick him up and she smiled and said something to the affect of "Well, he sure is active and eager to experience what's going on around him. We have some work to do, but I think he's going to do great." That was the first Sunday in many that I didn't come home and bury my head in my pillow and just cry.

It's been a few months now, and Liam is thriving with her. She smiles every single Sunday and greets him happily. She's "learned him". She has mastered the art of predicting what he's going to do and being one step ahead of him at all times. She knows he's going to rifle through anything at his level, so she makes sure the only toys and papers at his level are safe for Liam to play with. She puts the trash can up high where he can't reach it. She figured out that he eats all the crayons laying idol on the table, so each kid gets one crayon only making it much more challenging for him to get to eat one. She and Sister Lidell (the other teacher, who is equally as wonderful) have even taught him how to use a crayon to scribble. He's so proud of this accomplishment! She recognized that he wants to eat but has some oral sensory issues, so she keeps bananas and cold cuts (his two favorite treats of all time) on hand for him.

With her help and tremendous patience, Liam is even sitting a little bit during lesson time. She asked about his hearing aids, so I taught her how to use them. He gets to hear in class now!! Granted, it's short lived most of the time, but it's a start.

We happened to be at another friend's birthday celebration at a restaurant and Sister Meier got the luck of sitting next to Liam at the table. Anyone who has ever had the honor of dining with him knows this kid will have lots of first dates, but second dates will come once in a blue moon unless he improves his table manners. I could be wrong, but it seemed that she genuinely enjoyed his company. They had a bond. He is eager to please her and get her attention. She knew and noted things about him and his personality that I thought I only had noticed. She laughed at the funny things he did rather than being frustrated with it all.

As much as she has done for Liam, she has also done so much for me. There is no greater comfort than knowing your child isn't just being tolerated, but that he's being loved. I know she must go home exhausted every single Sunday. I know she must crave grown-up conversation. Instead, she gets Liam. In exchange for her sacrifice each week, I get the little break I need. I get to enjoy some much needed spiritual feeding while at the same time feeling pride in the fact that I know someone else can see that my child is lovable. I don't have to feel ashamed by how wildly active he is, or by the fact that he doesn't pay much attention to the lesson, or that he prefers to eat the play-doh rather than sculpt with it. I know she is delighting in his little accomplishments as much as I am, and I am so grateful for that.

So, Liam has found his person at least for now. And me? I have found peace of mind and joy in worshiping at Sunday services. Thank you, Sister Meier. You will never truly know what a blessing you have been to our family.

We Have a Plan!

Liam has been doing really well in school. I'm so delighted with the progress he's made in terms of learning to sit down and focus on what he's being asked to do and even with learning to play with toys the right way rather than simply throwing them. Even with that progress, though, it sort of felt like Liam had hit a plateau. He had one or two words and wasn't at all consistent with them. And then there's wearing his hearing aids. I'm pretty sure he'd rather be strung upside down in a closet by his pinky toes rather than wear his hearing aids like he's supposed to. It's a constant battle. His cap that Kadee made has helped a lot, but he's a smart kid and he's learning to get past it. Little stinker.

I sat down and visited with the school's director who has been working with Liam and keeping detailed notes on his progress. She and I both agreed that it's time to increase his time spent at school, so we're adding a third day of school for him. I think that's going to make a big difference. Even more importantly, she came to work with him here at home during the holiday break. While she was here, I was able to really learn what it is she needs us to be doing wit him. We finally have a plan and it's working!!!

We have a special "Kassidi box" that is full of specific toys that are only to be used while Liam is working on his language and wearing his hearing aids. We will take him to the front room of the house, which has its own door to help quiet things and only one piece of furniture (see? It pays to have no furniture!). When he's in there, he will be required to wear his hearing aids the whole time and to use the toys in a very controlled way. We have vocabulary we expect him to wait for before using the toys, and hopefully he'll even repeat the language we give him. Right now, we're focusing heavily on requiring him to look directly at us before we speak and allow him to use the toy. As we make more progress, I'll be sure to video tape little bits of what we're doing to demonstrate how we're doing this all.

The exciting news is that, just in the time we've worked over Christmas break, he's really getting it. He has repeated one word (bang bang bang), and has come to understand that he needs to look to us for direction. I'm really excited to see what kind of progress he starts to make now that he's being pushed at school, spending more time at school, and being pushed at home.

Updates, Updates, Updates!

It has been way too long since I've taken the time to really focus on blogging and keeping a record of CJ and Liam's progress. Since the new year is just days away, I've recommitted to focusing on documenting our adventures. Who knows? Maybe someday they'll be famous and we'll have all this to look back on. Maybe all this stuff will be compiled into a biography and I'll make millions of dollars. Hey! It could happen. More than likely, though, it'll just be something for us to look back on and learn from. That would really be enough to satisfy me. The plan, or at least my goal, is to post updates at least 2-3 times weekly.

Fun updates you can look forward to reading about in the immediate future:
Liam's increase in time spent at school.
Liam's "Kassidi box".
CJ's new friends and play dates.
CJ's school progress.
Liam's language acquisition.
Pictures, pictures, pictures.
As always, all the silly stuff that happens on a day to day basis will be here, too.

We Have a Word!!!!!

I am at a loss for words (which is rare...trust me) tonight. We have spent endless hours working on keeping Liam's hearing aids in. A friend of mine, Kadee, managed to make him a cap that officially works at keeping the aids where they belong. In keeping the aids in, we have succeeded at giving him auditory input. Finally, it's all paying off. I was recording a video of him demonstrating his cap and after I finished, he managed to say the one word he's allegedly been saying at school for a couple weeks now. This was our first time hearing him say it correctly at home. He's so proud of himself that he walked around for quite a while after the video with his toys in the air saying "uh uh uh".

Here he is saying his first word!! Go Liam!!!
Here he is demonstrating his awesome cap. This video also shows another big step for him as it demonstrates him finally copying what we do. This is a great step toward sign and spoken language acquistion. It really is a great day for him.