Thursday, December 30, 2010

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.

Monday, November 1, 2010

We Have a Word!!!!!

I am at a loss for words (which is 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.

Sunday, October 24, 2010

Liam's Special Helper

Liam is a particularly busy little bee. Keeping his hearing aids in his ears requires one on one attention to keep his hands busy and at the very least make sure he's not eating his aids. Knowing that I wouldn't be able to give him that attention on my own, I made it a point to find someone to come a couple times a week and spend time with him and help him keep those hearing aids in his ears.
Kassidi is in our ward at church and happens to live just down the street. She showed interest in the job, so I went ahead and hired her. That was one of the best things I've ever done. She's dependable, willing to learn whatever it takes to work with him, and (most importantly) happy to be with him. She's always smiling and gets right down on the floor and plays with him.
When she first started, he was pulling his aids out about every 30seconds-5 minutes. Now that he's had some time at school and with her, he's leaving them in upwards of 15-30 minutes at a time. It's working!! He's learning that he has to keep his ears in when Kassidi is here, and he doesn't mind. He loves her. The minute she comes in and gets his hearing aids, he scurries over to her and plops himself in her lap to wait for her to put his aids in and then waits excitedly to see which toy she's going to pull out and play with him.

She comes with us places when it's just me and the kids (I don't try to keep his aids in when we're out and about yet. I don't want them lost), babysits for all the kids now and then, and has just been a ray of sunshine and a blessing in our lives. She even comes over to help out now and then at church when the kids are feeling a little too rascally.
So there you go. Those of you who have hearing impaired children and are feeling a sense of guilt over the lack of time you have to help your child wear those all-important hearing aids can consider finding an eager young person to help keep them in. Someone like Kassidi who has a real desire to learn about hearing loss, has a lot of energy to spare, and is fun-loving can often be key to the success of our sweet little people. While it can seem like a crazy idea to hire someone so young to do something so vital, I can attest to the fact that even crazy things can work. And work it has in our home. Thanks, Kassidi, for all your hard work!! Liam loves you!!

Monday, October 4, 2010

Today I'm Frustrated

One of the responsibilities that comes with parenting children with any special needs is that of constantly advocating for your child. If I make the mistake of letting my guard down and thinking that everything is okay for a little while, something will go wrong. I let my guard down. Something went wrong.

Before the school year ever started this year, I had a loooooong chat with CJ's teacher and talked about how he needs her to be clear and consistant in her expectation from day one. While I understand that it may sound mean or tough to do this, CJ doesn't understand boundaries that are simply spoken to him. He needs them shown to him, and he needs them to be the same every single time.

I explained about the fact that he needed an immediate related consequence the first time a bad behavior happened and a positive clear consequence every time he did something good. While I don't need to know every last thing that happens at school, I do need to know about issues that require intervention. I can only support the teacher from home if the teacher keeps me informed of what is happening. I made clear that a bad report from school won't hurt my feelings. I want to help CJ succeed, so I need to know the good, the bad, and the ugly.

We are one fourth of the way through the school year and CJ has gotten a stamp in his calendar every day but three this year. Knowing that I'd been so clear about what works for CJ, I assumed that things were just going better for him. See? I let my guard down.

On Friday, he got a note home saying he'd been throwing pencils in the classroom when things didn't go his way, so he didn't get a stamp in his book. Okay. So, he lost his friend and computer privileges right then and there. He knew why he'd lost them, and took the consequence. I figured things would be better.

Then I got a call from the principal today. Apparently CJ had been sent to see her on Friday because the pencil throwing had been going on over the series of a few days. What?!!? He got a stamp all but Friday. In his mind, that meant what he'd been doing was okay. She went on to tell me that the teacher also had moved his desk because he was constantly disruptive. WHAT?!?! I NEVER got a message letting me know this was a problem, but only found stamps in his book each day. The very first time he was disruptive was when he needed to lose the privilege of sitting by his friends, at least for the remainder of that day. Now his desk is moved away from the preferential seating he really needs for best learning.

I asked when this was all happening and was told that it was mostly during all last week. At the start of the week, the audiologist had changed his map on his processor to a program that works better, but CJ hates. I let the speech teacher know and asked her to let me know if there was a problem in his behavior since that's how he usually lets me know he is frustrated with something. I assumed this information would be passed on, but hadn't heard anything about his behavior going downhill. See a correlation here? I do.

It gets even better. As a result of the continued bad behavior, he was going to be losing his recess today and tomorrow. Okay, great. So, now he's being punished three days later for something he did. At first I said okay, but then really thought about it and was very bothered by this plan.

I called the principal back and explained my position on this. I asked how his behavior had been all day and she said it was good. I let her know that taking today and tomorrow's recess privilege away tells him that on the days he was poorly behaved, he could still get what he wanted. But, on the day that he made good choices, he was still punished. She said she'd told him why he was losing recess and that he seemed to remember the choices he made that got him here in the first place. That's nice. You can still expect an explosion of bad behavior because now his boundaries are very blurred.

I let her know she could still have taken his recess, but in a way that correlated with the bad choice. "CJ, since you threw your pencil, that tells me you aren't ready to be allowed to have it so I'm taking it from you now. That means you can't do your work right now. Instead, you'll have to do it during recess when I can be with you to be sure you don't throw your pencil." See how that works? You can still take recess from him, but have some distinct meaning behind it. He NEEDS that.

CJ has a great teacher who is so sweet and kind with him. I know she's just trying to be patient with him and give him the benefit of the doubt. She wants him to succeed and to be happy at school. Luckily, that's my goal for him too. Now we just have to come to a place where we are both working in the same way to get him to that goal.

In the start of the year, I suggested we put a behavior plan in place for him. The school didn't think he'd need it. That was the place where I made my biggest mistake. In that moment, I chose to agree with them instead of advocating for CJ to be successful by having a plan to present clear boundaries for him.

So, now I know what he needs. I've called a meeting and will ask for the following:

1. The very first time he does something unacceptable, he needs to be told that it's a bad choice in no uncertain terms AND what to expect if it happens again.

2. If the behavior happens again (and it will), the described consequence MUST happen with no discussion of warnings or extra tries.

3. If he does something great, it needs to be acknowledged as well. CJ thrives on "earning" points.

4. If CJ hasn't really earned a stamp, he shouldn't be given one. If the teacher wants to continue giving stamps for overall good behavior despite the occasional bad choice, there needs to be some other sort of point system that he can earn throughout the day to help him know when he did well and when he didn't.

So, I'm off to advocate once again. I'm not sure when this meeting will be, but I will be sure to return and report when all is said and done.

Sunday, October 3, 2010

The Bus Bully

We're really proud of our CJ. He's come far over the years. I was sitting back today remembering the day he was given his name and blessing as a baby. I remember praying that he'd be blessed with his hearing, and how I just sat in the back row of the church sobbing as I listened to his loving father bless him with the gift of Deafness. In that moment, I knew that he was the child we were meant to have. I didn't have any idea in the world how we'd rise to the occasion of raising this precious, quiet child. I wondered how his Deafness would ever be a gift of any kind. If I'd only known then what I know now, my heart would have been rejoicing over the opportunities I'd been granted to parent this amazing spirit.

CJ's hearing loss has forced him to be strong-willed and determined if he wanted to find his own voice. And find it he has. He has impeccable speech, an amazing thought process, and is in most senses a typical child. (If there is any such thing as a "typical child" in the first place).

With all the wonderful things CJ has going for him, there is still some opposition in his life. Let's be honest, though. There is opposition in all things, right? For CJ, the greatest trial right now is learning to relate to peers his own age. CJ doesn't always understand what other kids are trying to convey to him. He especially struggles to understand sarcasm. Additionally, he seeks out the good in everyone and is sometimes overly trusting. This has gotten him into some trouble recently with a bully on the bus.

The thing is that he didn't know he was being bullied by the other child until the other kid came right out and threatened him. He knew he didn't like that the other kid kept stealing his books from him. He knew the other dude made mean faces at him, but he didn't really understand what it meant. Luckily, he has some friends on the bus who did understand what was happening. Being that they are girls and in kindergarten, these little friends made sure they told me all about it. My radar was already on alert when CJ came home and told me that the kid said he'd "punch his eyes out" if he accidentally bumped into the the other kids' backpack when the bus went over a bump again. At that point, CJ understood what was going on.

He told me what happened and that he was scared to go on the bus again since he was assigned to share a seat with the other kid. He was able to let me know that he didn't like it that the other boy was taking his books, and that he wanted him to stop.

What CJ didn't understand is that he can stand up for himself. I contacted the school and the situation has been rectified. Apparently the other child is having a lot of issues at home that are spilling over into his schooling, so we're hoping things get better for him in general. More importantly, CJ has learned that he can say something to the bus driver, his teacher, or even to a person who is bullying him to help make it stop.

This is obviously something that CJ will need to work on over time, and his speech teacher at school is going to work with him to help him learn more about what messages others are sending with their words. She'll help him learn some coping mechanisms and what to say in these situations. Hopefully this is the last we'll hear from this particular bus bully, and the start to a lifelong skill of self-advocacy for CJ.

Saturday, September 25, 2010

Liam and His Hat

I have only wonderful updates on my sweet Liam, and I'm so delighted to share them. The combination of him having his pilot cap and attending his new school has made for leaps and bounds progress for him.
The biggest, most important, thing I need to say is a huge THANK YOU to my friend, Kadee. She worked tirelessly to create this cap for Liam. She, another friend, and I are working on tweeking it a little bit to make it adjustable for each individual child's needs. For Liam, having this cap is an important key to keeping his hearing aids in. In addition to the cap, the time he's spending at school being required to keep his hearing aids in is leading to great things.
1. Liam has learned to try to engage others in seeking their attention. When he is in his high chair, he has discovered that he can make a silly face to cause us to laugh. He's so proud of himself!
2. He has begun to experiment with sound. I have a stainless steel mixing bowl that he has basically adopted as his own. Initially, he just liked it because I showed him how to spin a ball in it. He noticed that he could hear the ball spinning (it was a hard plastic ball with tiny beads inside it that rattle) in the bowl and began going out of his way to clang it against the bowl. While he was wearing his hearing aids because he had his cap on, he noticed that different items make varying sounds against the edge of his bowl. He goes out of his way to find other items to clang against the edges. So far he's tried a wooden hammer from our block set, a Thomas the Tank Engine toy, a chocolate bar wrapper (which he was less than impressed with), a shoe, and some silverware.
3. Liam has noticed that sound comes out of the television. The other day he was having speech services here at the house and Rachel turned on Dora the Explorer behind him. He was so distracted by the sudden sound he was hearing that he just couldn't focus any further on his speech lesson. I never thought I'd be so delighted to see my child distracted by the television.
4. He has clearly been practicing in the sound booth at school. Part of the conditioning for hearing tests is to have a child hold a piece of a ring stacker to his ear and wait for the sound. When he hears the sound, he puts the ring on the stacker. This, of course, leads to great applause. Liam now walks around the house holding toys to his ear apparently waiting for the sound to happen.
So, we're making progress. It's not even slow progress, but sudden and rapid. We love this child more than life itself and are so thrilled to see wonderful things happening for him. It's as though he's suddenly woken up to the world around him.

Friday, September 17, 2010

Fun Liam Updates

Liam started his new school last week. In addition to that, he's been working a bit with his speech therapist provided by early intervention. I'm excited to report the following fun updates on him:

1. The speech therapist noticed that Liam is occasionally moving his mouth without making sounds. I know this sounds silly, but this is a good thing. It shows that he knows communication has something to do with the mouth.

2. When a toy is taken away from him or someone walks away before he's done playing with them, he will cry. This is a totally new behavior for him. He has never used crying as a means of communication before.

3. Liam is learning to be conditioned for hearing tests in a sound booth. Good conditioning has resulted in a really good hearing test for him. We know now that we do have the right hearing aids for him. His next sound booth hearing test will be aided, so we'll start to determine if he's gaining benefit from his aids.

4. Liam has repeatedly turned his head when someone called his name while he was wearing his hearing aids. This is a fantastic sign that he's gaining benefit from the aids.

Overall, I'm pleased. We still have a very long road ahead of us to help him catch up, but that road is getting shorter and shorter with each day that passes. Way to go, Liam!

CJ Has a Friend!!

This is a really big deal for us, although it seems like just a typical day for any other parent of a seven year old little boy. Other parents aren't raising my seven year old little boy, so I don't expect them to fully understand.

CJ has always played very well with children younger than him. He loves playing with Rachel's friends best. He also really enjoys older people and adults. It's impossible to forget that his very favorite person on the planet is a cowboy who could be his grandpa. For whatever reason, his comfort zone has always been with people who aren't his age.

Part of CJ's biggest problem is that he struggles with relating to peers his age. Socially, he has always been just a little bit behind other kids his age. He doesn't tend to understand how to play with them or make-believe like they do. His interests are just different. Partly, it's because he isn't as confident in his gross motor skills. Playing running or jumping games is hard for him. Bike riding is next to impossible. This all goes back to his issues with a damaged vestibular system making it difficult for him to know where he is in space. Some of it is because he can't hear their voices or understand their speech as well as he understands adult speech. Adults recognize his hearing loss and are able slow down and articulate better for him.

It's been a long road for CJ when it comes to friendshipping. Finally, I'm really excited to report that we're making enormous progress. Our new neighborhood is full of children, some from church and some his own age. There are two little boys in particular. G is the younger brother of T, a friend of Aiden's. G is a year younger than CJ and likes to play with Rachel, but also is learning to get along well with CJ. Then there is L. L is the same age as CJ and in the same grade. He has twin sisters that are in kindergarten and love to play with Rachel. L comes over frequently to play Toy Story 3 or jump in the bounce house with CJ. He cries when his mom tells him it's time to go home.

Did I make that clear? Another child the same age as CJ wants to play with him and cries when it's time to go home. This is no small miracle for us. We are so delighted to see him laughing, playing, learning, and enjoying being around other children the same age as him. He finally knows what it feels like to have a friend that wants to play with him. That's a gift no child should ever live without.

Friday, September 10, 2010

One Small Step!! Yay!!!!


Liam had his first day of school this past Wednesday. He only goes Mondays and Wednesdays, but will eventually be bumped up to Fridays as well. I'm a little anxious to add the Fridays because I think he really needs the extra help. The more we can give him now, the better.

One thing they really worked on with him is keeping his hearing aids in. This is not a new problem. I've shared it lots of times in the past, but it has gotten much worse. He will not leave the blasted things alone for more than thirty seconds. When I went to pick him up, his audiologist mentioned that they'd had some success using a bonnet to keep the aids in his ears. (Apparently he wore the teachers out refusing to keep them in. Ummm...I guess I won't say I told you so.)

The bonnet reminded me that we have the hannah andersson pilot cap from last year. I knew right where it was, so I pulled it out for him. Voila! A good twenty minutes with the aids in. The really exciting part?! FOR THE FIRST TIME IN HIS LITTLE LIFE, HE TURNED WHEN I SAID HIS NAME!!! I didn't have to yell it, stomp on the floor, flash the lights, wave my hands, or stand on my head while sending him morse code smoke signals. He just turned.

The hat isn't quite the right size. He is able to get his naughty little fingers up in there and take out the aids, but some of my amazing friends are working on a cap that does the same thing, but is bigger to prevent him from attacking the aids. (Little stinker!)

Anyway, I made a video so the girls who are working on this project could see just what I meant. As you can see, he's doing great! He's so happy, and is finally trying to interact a little bit with us. You can also see that he's learned to clap for himself. This is a very new thing, and it's wonderful for him. He does something he thinks is good and then claps while looking to us for validation. If he made a good choice, we clap back. If not, he gets the "grumpy" look and a big NO. He hasn't quite figured out that it's negative feedback sometimes, but the fact that he wants any feedback from other humans at all is huge.

Sunday, September 5, 2010

Liam's IFSP

Liam had his IFSP this past week. He had one right before we moved from TX, but a new one needed to be done since we've moved to a new state. We were prepared for that before we moved, so it didn't bother me to make the time to do. We also had an IFSP for Drezden, but there isn't a whole lot to say on that one. I will say that setting up services for two children on the same day really does make for a marathon meeting.

It's hard for me to acknowledge that I like this state better than TX because my heart will always belong to our team back there. The services offered here are more vast and more easily accessible in my opinion. That said, the bonds we had with our workers in TX can never be replaced, and there is something to be said about having close bonds with the people serving your children.

As far as what Liam will be receiving, I am very pleased with what is being offered. He'll be getting the following services:
OT 1 x week ( Therapist to be determined)
Nutrition 2 x month
Special Instruction - 1 x month home with Betsy and 1 x month 30 min at the center
Preschool class 2 days per week
Speech Therapy every other week ( therapist to be determined)

The OT will be for his eating issues and to help him overcome his sensory issues, particularly with foods.
His nutritionist will be coming to make sure he's getting the right kinds of foods and nutrients he needs since he still doesn't do so hot with solids.
The special instruction will be given with an educator of the Deaf from the Moog school location in our area. This was actually an area of contention because the Deaf school wanted us to come to them once a week for the instruction, but first steps wanted everything done at home. They compromised for now, but I think it won't last long. I'm pretty sure the school is going to win, and I'll have to go to them once a week. It makes my schedule really sketchy, but is better for Liam. I have some mixed feelings in that area.
The preschool class twice a week is also at the Deaf school. I'm concerned that it's not enough, so the plan is to revisit his needs in a couple of months after they've had time to teach him how to get the most out of his class. I'm hoping we move to three days sooner than later.
Audiology will include all hearing testing, repairing his aids, earmolds, maintanance, etc. This is a HUGE help to us financially. Knowing we don't need to worry about his audiology makes it okay for us to take a huge sigh of relief in other areas.
I'm not fully understanding what the speech therapy will be for. He gets speech at the Deaf school, so I'm hoping the two go hand in hand. I do know he'll be getting his sign language skills from the speech teacher.

So, there you go. Nothing fancy, and no deep thoughts today. It's all just pretty black and white. We'll see how things go. I am pretty sure we'll be making changes as we go along, but overall I'm pleased with the efforts being made in Liam's behalf.

Friday, August 27, 2010

I've Died and Gone to IEP Heaven

I had CJ's IEP yesterday. He's a transfer student, so it had to happen pretty early in the school year. I went in ready for a huge fight and gearing up to come away black and blue from beating my head into a brick wall. I even had Kristi, CJ's old DeafEd. teacher with me on speaker phone.

They listened intently to Kristi's input. They took interest in my concerns. They took lots of notes. Then it happened. They came to the part of the meeting where they tell me everything they were prepared to offer him. You have to remember that he was dismissed from all speech services because his articulation was too good. He was offered only 45 minutes a week of services with Kristi because "we know he hears us". OT services were continually denied because "we know he has sensory integration needs, but it's not academically necessary for us to address them". With all that in mind, I was prepared to hear a whole lot of hot air and be frustrated. In the past, I've even had Kristi telling the district what CJ needed and it still was shot down.

"We never dismiss our Deaf students from speech. He'll be working on everything from articulation to auditory training on a regular basis. He will have regular access to our speech teacher, who's office is right across the hall from his classroom. We will provide him with a new FM system, and will replace it every three years for him. We will provide his teacher with training and tools to better prepare her to teach CJ. We will be teaching him 25 new signs per quarter, and we will work to have them be signs that go with new vocabulary he's learning in class. We will be getting all classroom vocabulary in advance and work with him on processing their meanings. We will be offering him extended school year, during which time he will receive further auditory training, extra vocabulary, and anything else he'll need to prepare him for the following school year. Lastly, we will be evaluating him and prepared to provide him with the OT services needed to help him with his sensory processing issues".
Yep. All of that. I didn't have to beg, plea, cry, throw things, threaten, or stand on the table screaming. They just offered it. In the words of Kristi, I've died and gone to IEP Heaven.

Sunday, August 22, 2010

Liam's New School

Liam and me at the local zoo this past weekend. He was more interested in the animals than looking at the camera.

We haven't had Liam's IFSP yet, but all of his testing is done. Before we moved here, we learned about a school in our area. I did a little research into our options and agreed that the site closest to us would be a good place to send him to, but wanted to be sure we checked it out first. It's the same place CJ went to get his testing and educational recommendations, which our school district will be honoring and implementing.
When we visited, we spoke with the director and asked lots of questions. There are some things about it I'm not 100% sure about, but nothing that counts as a deal breaker for us. The school is oral only, and I believe in signing with all my children. They assured me that we could still sign with him, but not at school. That seems fair enough.
Liam will be receiving a lot of amazing services at the school. They are:
*all audiology services until three years of age including aids, testing, ear molds, critter clips, etc.
*seeing his own audiologist at the center 90 minutes a month
*one on one instruction with an educator of the Deaf
*a teacher to follow him around making sure his hearing aids stay in (a HUGE problem for us)
*speech services
*auditory training
*possible continuing services at the same school when he turns three paid for by our school district if it's deemed necessary for him (which it more than likely will be)
We'll be starting out with him going just two mornings a week and then move up to three mornings a week as soon as he's ready and shows compliance. I'm hoping that's before Christmas. I really believe this will be the best thing for him.
It's so vastly different from the way we did ECI in Texas. We were so happy there, and I was pleased with the progress he was making in most areas. Making the decision to do things this way once we got here was a hard one, but I think will have the most positive outcome. He'll still be having some services at home through the state early intervention program. He'll have an OT that comes to work on his oral sensory issues, a speech teacher, a teacher of the Deaf to teach him sign language, and a dietician to follow his eating habits. All in all, a very good plan for him...I think.

Friday, August 20, 2010

School Has Started!

First day of school pictures. He's so proud of his Toy Story clothes, backpack, and lunchbox.
One of the scariest parts of moving when you have a kid under the special ed. umbrella is the fact that you always have to wonder if the new school district will be able to meet your child's needs as well as the old one did. Then there's the part of you that hopes that the new district will be even better than the old district was.
It seems that we may have hit the jackpot and managed to get CJ into a system that is more equipped and prepared for children like him. What luck!!! After a conversation I had today with his soon-to-be Deaf Ed. teacher, I am really breathing easy.

I walked in to drop him off on the first day of school and mentioned to his teacher that he hadn't been ARDed yet, so there was no FM system ordered for him. "Not a problem. They're coming today to bring him an FM." Wow!! Many of you may remember the battle we had when CJ started Head Start and the FM was nowhere to be found...for weeks!
In addition to that, his teacher made a point to call me ahead of time and seek out my input regarding what he'd need in the classroom. She admits that she's never taught a Deaf student before. I let her know that was fine. I've never parented a Deaf child before CJ, either, but we seem to be doing okay so far. She seems very opened to learning how to work with CJ and insure success for him.
As we were talking, I described some of his wacky sensory issues. "Why hasn't he had an OT working with him?". "Well, our last school said it wasn't academically necessary". "Okay, we'll have the OT and the PT come observe him and decide what they think." Really?? Services being offered (even suggested!) without a fight?? Someone pinch me.
Today I got a call from his Deaf Ed. teacher. She is already on the job with him. She went and visited with him today, provided his teacher with lots of valuable information, set him up with his FM, ordered his IEP meeting, and made contact with me to inquire about what we'd be needing for him. Again, WOW!!!
We took CJ to the oral Deaf school in the area right when we moved here so he could be tested. They found a few issues with him.
*He is developing a lispy sound when he tries to say [s]
*His expressive skills outweigh his receptive, so he easily fools you into believing he understands everything you say.
*When he doesn't really hear something the right way, he just chooses another word that sounds similar and assumes that's the word you meant.
*He needs some work on his auditory processing.
While I appreciated the testing and the suggestions, I knew I was in for an uphill battle getting the school to implement those suggestions. When his teacher called today, she said "I've also looked over his testing from (the school), and have contacted the speech department to implement their suggestions. I'll be conducting the rest of the needed work for him". I was shocked, almost speechless. (Almost, people. Don't get all shocked that I was at a loss for words.)
So, there you have it. We are three days into first grade, and things are going well. I think we are in a place that is fully prepared to work with him and help him succeed. What luck!

Finally Moved and Ready to Blog Again

There are so many updates to post about, but I'm a little bit limited on time. I will be posting at least once a day for the next little while as I try to get caught up. Hopefully that will start a new habit, and I'll be more consistant like I used to be. While you wait on those fun updates, here are a few exciting points to note.

*Our new school district is on top of things that CJ already has been given his own FM system even though we haven't done his ARD.
*CJ was tested by the oral school for the Deaf, and our district is going to honor all of their recommendations. He'll be getting speech (finally!), itinerant services, sign language instruction, and more.
*Liam will be going two to three mornings a week to the oral school paid for by the state.
*CJ's sensory integration issues are finally going to be addressed.
*There are a few other Deaf children at church, and CJ has become friends with one of them.

I'll be back very soon to address all of those things little by little. There are so many happy updates to report that I don't want to miss a thing.

Thursday, July 8, 2010

Bittersweet Blessings

Moving has proven to be more heart wrenching for me than I expected it to be. There are just so many things here that I am very attached to, and leaving those things behind is traumatic. I am very bonded and completely trust our ECI team. They are AMAZING people and have been the glue that's held me together more times than I can count.

We sat down today as a team to work on Liam and Drezden's plans for when we move. The new state has already said Liam will be able to attend an excellent program for kids 18 months and up who are hearing impaired three mornings a week. It's a HUGE blessing, but my heart doesn't even want it. I don't want someone else to take charge of teaching him, even though I know it's what is best for him. And, more than anything else, I don't want someone else in charge of my kids' services. We've had the same service coordinator since CJ was about seven weeks old. That's nearly seven years now. While building friendships with clients is very frowned on, seven years of being someone's rock has led to a great friendship with her. I can't even breathe when I talk about leaving and not taking Jo with us.

As we were working through Liam and Drezden's plans and acknowledging that all this hard work and planning will probably be put on the backburner anyway, I just sort of lost it. I'm so not ready to trust anyone else with these precious children. I know we're going to be so blessed for moving, especially in this aspect. I just had that the blessings have to be so bittersweet.

Tuesday, July 6, 2010

Don't Touch That!! (Again!)

I'm pretty sure Liam is going to be my dare devil child. CJ was always very curious, too, and could get out of just about anything. This is a different kind of daring that I see in Liam, though. His is the kind that ends him up in the ER frequently. Isn't there some sort of speedpass parents can get for when they have children like mine who consider ER doctors and nurses to be like some sort of extended family?

We had a lovely 4th of July dinner of hamburgers cooked on the grill. Since we're in a tiny little apartment, we just have a tiny little grill. It's one of those $20 ones you can get at Wal Mart. Not even a little bit fancy. It stands about a foot and a half tall, cooks about 6 burgers at a time, and just does its job and nothing more.

After finishing eating, CJ decided he wanted to eat his cupcake on the patio. No big deal, right? Well, it shouldn't have been, but he forgot to close the door behind him and Liam toddled right on out the door. Because he's the most inquisitive and accident prone child ever to walk the earth, Liam had to make a bee line to the still hot grill.

Byron and I saw it happening, and it was one of those Twilight Zone moments where everything happens in slow motion. I dropped everything and flew out to him, but it still wasn't fast enough. Both hands and one fore arm had already touched the grill.

I quickly took him to the Acute Kids Urgent Care that was down the street and they sent him on to the Children's ER in Plano. The ER at Children's decided he needed to go to the ER in Dallas. ARE YOU KIDDING ME?!?! We all know how I feel about Children's of Dallas.

I fought and argued and disagreed with them. These burns aren't nearly as bad as the one he got a few months back. I knew he was fine, but they were adament that he needed to go. They wanted to send him via ambulance, but I put my foot down. No. Way. Is. He. Going. On. Your. Ambulance. He wasn't crying in pain, the burns were not above second degree, the swelling had slowed down significantly, and there was no reason to justify such insane measures. The doctor in Plano insisted that the swelling could get worse and he could lose his fingers. ARE YOU KIDDING ME?!?! Really, this wasn't half the burn he'd gotten last time. Really.

I finally relented and agreed to take him myself to Children's of Dallas so the burn people could look at it and tell me he was fine and just needed silvadene and treatment with the pediatrician. I also said they'd have less than 30 minutes to get him into a room of his own away from other sick children before I'd take him and leave. In my mind, the risks of being there far outweigh the benefits when you consider his health. They did do well. I'll give them that. He had his own room within ten minutes of arriving. That's all they did well in, but at least he was in his own space.

It took an hour or so for the burn specialists to come in. They took a few minutes to look at him and the conversation went something like this:

"How did this happen?" I told them the story.
"How many kids do you have?"
"And, what do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"You clearly know what you're doing, and don't need to be here. Let's get him ready to go home".

Finally!! Someone who was reasonable enough to realize that I can parent my child AND that he didn't need to be in that nasty ER. That's where it ended, though. Apparently a child can't be sent home until a regular doctor sees him. Really?!?!? He's there for a burn so shouldn't it suffice that the burn doctor saw him and said he could go home?

Well, it was the 4th of July. It was getting late. Accidents started happening and the ER was filling up (which is why I didn't want to go there in the first place, but what do I know? I'm just the mom). Anyway, we waited and waited and waited. Finally a "doctor" came in who had psychology on her pretty white jacket. Great. They sent my kid a shrink because that's all that was available?? Really, I was ready to go home. Couldn't they just dress it and send us on his way? This is how the conversation with her went:

"Can you tell me what happened?" I told the story.
"I need a medical history. Does he have any history of illness?"
"He has a pre-disposition for C-Diff."
"What's that?"
SERIOUSLY? ARE YOU KIDDING ME?!?!?! At this point, I knew expaining NEHI would be more than a challenge, so I just dumbed it down for her so she'd understand.
"Does he need bloodwork do you think?"
"No, he's here for a burn."
"Any fever?"
"No, he's here for a burn."
"Any fever or coughing?"
"No, he's here for a burn."
"What do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"Hmmm...let me go ask someone what we need to do".
"Ok, but can you make it quick? The specialist said he's good to go, but we need you to sign it off."
"Any sign of ear ache or anything?"
"No, he's here for a burn."

Yeah. It went that well. I'm not even exaggerating. I HATE that ER. (I think I've mentioned that before, though).

Anyway, we finally got to leave around 3am. I got home around 3:30 and had a total of three hours' sleep before having to get up and take him to the pediatrician who was only opened half a day that day.

Our doctor took one look and said, "They wanted to ambulance him for THAT?" He laughed. What did he do? He applied silvadene, dressed the wound, and asked us to come back tomorrow so he can treat the wound, debride the blisters that are open, and watch for signs of infection. Hmmmm...what a gret idea. Wish I'd thought of that.

Saturday, June 26, 2010


CJ finally had his ARD last week. I'd been asking for it for a while, but there was a glitch in the system, and the school thought it'd already been done.

There isn't really much to be said about it (which is a good thing really!), but I had yet another embarrassing moment that (as usual) needed to be blogged. I thought I was really smart because I had a friend watch my four oldest kids for the ARD. I kept Liam with me. As usual, Liam felt the need to completely disassemble the meeting room. There was literally nothing he didn't touch, so I assumed he was the reason I couldn't find my phone when the meeting was done.

I had heard my text message alert go off once during the meeting, but ignored it to focus on the discussion. I KNEW because of that moment that the phone was in the meeting room. It wasn't in the diaper bag and I had no pockets. Everyone was flipping things over, looking under and inside of everything they could find. The phone was nowhere to be found.

Finally, I asked our Deaf Ed. teacher to just dial my phone so we could find it when it rang. Still, everyone kept looking while we waited for it to ring. Finally, after about 30 seconds (and just when MR. TRAW THE PRINCIPLE was standing right next to me), my bra began ringing. Nice.

Thursday, June 3, 2010

Our Kindergarten Graduate!

Our Graduate
CJ and Jim, his bestest buddy EVER
CJ and Mrs. Cowart, who might very well be a saint.
CJ with Mom and Dad
Showing off his cowboy boots, which he wears every day on the wrong feet with his pants on backwards...or shorts in this case.
By some miracle, CJ survived a full year of Kindergarten. He knows more about reading, more about counting, more about sharing, more about practicing self-control, more about teamwork, and a lot more about how to drive a teacher completely bonkers.
Yesterday was his Kindergarten graduation, and he was so proud of himself. His buddy, Jim, came just in time to see him march in with his class. Being the CJ that he is, he did a goofy little dance when he saw us, and then held up the line long enough to ask what was for lunch. Figures. Silly kid.
He proudly sang the three songs they've been practicing. I felt like I already knew those songs because he's been singing them around the house for a few weeks now. When his name was called, he shook his teacher's hand and then Mr. Traw (the principal) and Ms. Dowell (assistant principal) with great pride.
After the ceremony, we followed him to his classroom for pictures. He was so excited to show Jim his stylin' cowboy boots. He wears those boots every single day. Usually on the wrong feet, but who is counting?
So, now we move on to our new school. I don't know that we'll ever find another teacher as amazing as Mrs. Cowart was. She was always fair and firm and loving with CJ. It takes a special person to make as much of a difference in his life as she has.

Monday, May 24, 2010

It's Time Someone Says Something

I don't usually ask that anyone promote my blog. I'm not asking for that today, either. BUT, I would ask that you post a link to this particular post to anyone you know. Post it on Facebook, Twitter, your favorite local news link, or whatever. It's time for someone to speak up, and make things right.

As you know, Liam has spent a lot of time in and out of hospitals. Thankfully, his most recent stays have been very brief. Through it all, we've had our fair share of incidents with one hospital in particular. You may recall THIS INCIDENT or some of the many things that went wrong over the summer while he was in the care of this particular hospital. We had a doctor tell us we can't choose our child's color when we expressed concern over him being blue, nurses fail to come despite alarms going off and us begging them to come in only to discover that he truly was in distress, and had his oxygen turned off by a cleaning lady who told us the O2 was really just optional. I let all of those things go, although I did blog them for my own therapeutic benefit.

Well, they've screwed up again. DALLAS CHILDREN'S HOSPITAL, IT'S TIME YOUR NAME BE PUT OUT THERE FOR EVERYONE TO KNOW ABOUT! I am typically a very reasonable person, but things have got to improve there before someone is seriously injured or billed unreasonable prices due to stupid mistakes.

Back in October, Liam had some trouble and spent a little time in the hospital under observation. He had chest X-rays, and a test for pulmonary hypertension. We were there just under 24 hours, and were billed just over $7,000.00. Of that, we had to pay $50.00. Our insurance covered the rest. I blogged that stay HERE. Overall, I was pleased with the whole experience.

Then, in February, he got RSV and had some trouble wanting to drink. His sats and disposition were fine, but Dr. Sanchez wasn't pleased with the amount of fluids he was taking. Since she couldn't see him in her office, she felt like she wanted him admitted for observation just to be sure he was okay.

This stay was so minimal that I didn't even blog it. We arrived and he was admitted to the unit around 8pm on the 18th of February. He got a bag of rehydrating fluids, had some chest x-rays, and some breathing treatments. The respiratory people gave him the meds, but I administered the treatments. Other than that, the stay was identical to the stay in October. He was on the same unit with the same nurses and the same doctor overseeing his care. We left at around 5pm on the 19th.

The price tag for that stay? $27,778.00. Yep. You read that right. I called to figure out where the error was and they said he was inpatient so everything costs more. I said that, no he was there for observation. They argued. I fought. They argued.

I called back again today and begged them to compare the two stays and see that he received essentially the same treatment both times. They relented and said that he was inpatient because it was 25 hours that he was there in February. This is the exact conversation we had:

"What? 8pm one day to 5pm the next day is 25 hours?"

"Yes, ma'am. It is."

"No, it's not. Are you crazy?"

Customer service rep. starts asking another billing specialist to help her count, and they both agree that it's 25 hours.

"Seriously? Can I talk to someone else?"


"Someone who can count would be great!"

"Ma'am, count it. It's 25 hours."

"No, it's not. 8pm today to 5pm tomorrow does not equal 25 hours."

"Yes, it does."

"Fine. Let's count each hour. Let me get a piece of paper."

"That's a great idea, ma'am."

We count. I get to 5pm the next day.

"21 hours! Ding, ding ding! It's 21 hours."

"Can you please hold?"

"Um, yeah. Sure."

She comes back to the phone and concedes that it is indeed less than 25 hours. (Yeah. Duh!) Then she says she's looking over the itemized bill and there are the two $10,000.00 IV injections he received. Um, WHAT?!?! He got IV fluids for hydration in case he was truly dehydrated.

I ask her to please tell me what the drugs were for. She says she's never seen this drug listed before, and has to ask a nurse. She'll call me back in a few minutes. I figure I'll be waiting about 25 hours.

So, one of two things has happened. Either A). He was billed twice for a drug he never got. OR B). My child was negligently given a very expensive drug he was never meant to have. Which do you think it was?

On so many levels, there are things seriously wrong here.

1. If he really was an inpatient, the hospital justifies charging a three times as much for the stay even though he got exactly the same treatment as when he was there for observation. That's like saying two people could show up to the grocery store for a gallon of milk. One could come in a rolls royce and the other on a motorcycle. One would be charged $200.00 for his gallon of milk while the other pays only $4.00. And we wonder why medical bills are so out of control in America? Good hard working Americans are paying high premiums for insurance only to be charged huge fees for care they never received. I even called the insurance to report the problem, and the insurance felt that these were reasonable. I told them that Liam hadn't received some of these things (2 IV's at $10,000/each). They did nothing. Just paid it out, and charged me a high premium for it. NOT OKAY!

2. The people in billing at Dallas Children's Hospital not even able to tell time let alone recognize how many hours a child was in their care. These are the billing specialists! These are the people who take my credit card number and apply charges to it. THEY CAN'T COUNT TO 21!!! This is a serious problem. (I genuinely hope that call was recorded.)

3. A child was either given a drug he shouldn't have had, or he was billed for very expensive drugs he should never have had. Either way, it's a problem that needs to be resolved.

I'm still waiting to hear back from the girl in billing who is looking into the IV charges. She said she'd call back in a few minutes. That was at 2pm and it's now 6:31pm. So, about 25 hours later and I'm still waiting. ;)

I want the record to show that the doctors and nurses involved in this situation did their jobs well. They paid attention to my child's needs. They listened to my concerns. As always, the direct care staff did there jobs precisely right while the executives and white collar workers screwed things up. Again.

I'm hoping you'll share this story with anyone who will listen. Forget health care reform. Simply fixing billing and fact checking processes for medical care could potentially save us all more money than we can count.

I may be just one voice, but my voice matters. When it's combined with other voices, it is heard. For the safety and best interest of our wallets and more importantly our children, feel free to share this post.

In all fairness to the hospital, I will be updating as changes occur. I'm sure this situation is bound to be corrected in quick time.

Sunday, May 23, 2010

Baby Steps

Liam is finally taking some baby steps! I mean that literally. He isn't really walking all the way yet, but he is taking a couple of steps here and there. I'll take that. He kind of looks like Frankenstein when he does it, except he doesn't have funny scars and screws coming out of his neck. He also doesn't have a flat head, but other than those few things, I'd say he's got a lot in common with Frankenstein.

His hand is also just about completely healed! I'll have to take and post some more pictures of it so you can see the progress. I'm so relieved that it's healed so nicely and with what appears to be the minimal amount of pain. No pain for Liam takes away a lot of the Mommy guilt for me.

He also seems to be really interested in learning some new signs. This past week my friend, Kelly, watched him for me while we moved. I went to pick him up and he looked like he was doing something from I Dream of Jeannie. You know how she crosses her arms one at a time and then blinks her eyes while bobbing her head forward? That's what he was doing. It was exactly the same. I asked Kelly what it was, and she said "Oh. We taught him to pray". He is still doing it, and I think it's so cute. While it's not a correct sign, it does serve as a reminder that he's really ready to communicate.

Liam is really enjoying this temporary little apartment we're staying in. It has a glass fireplace that he seems to think is the greatest play area ever. The only down side is the trail of soot that he leaves throughout the house when he's done. He also loves the mini blinds mini blinds that are all over the apartment. I have quickly learned that I can't walk around the house half dressed because I have to keep the blinds up high enough that he can't reach them. He is a real pro at bending them all out of shape.

So, there you have it. Liam's most recent baby steps. Pictures of the Frankenstein walk, the healing hand, and the Jeannie prayer coming up soon...

Monday, May 10, 2010

Mom, Do NOT Feed Me Baby Food Mush!

We are still working on Liam's feeding. We have made progress in terms of bananas and yogurt. I can put almost anything in yogurt, and he'll eat it. But, we haven't gotten to where he'll eat other things of similar consistancies to yogurt. I decided it was time to at least try. Here's how it went.
Strawberry Mango Yogurt-Check!
Fresh Banana-Check! (actually he ate two bananas)
Baby Food Oatmeal With Pears and Cinnamon-Um, no thanks. Not so much.
Baby Food Turkey Dinner With Potatoes, Peas, and Carrots-Not a Chance in Hell.
As you can see from the photos, though, he was satisfied by the time he was done. He loved that banana best of all. The only downside was that I then had to redress his burn because of all the banana guts in the dressing.
(By the way, we saw the dr. today, and his burn seems to be healing according to what should happen. So far, no complications. We will take that!)

Sunday, May 9, 2010

At Least it Hasn't Slowed Him Down Much

Liam's hand has been a constant focus of our attention as we've worked to be sure it heals okay, and doesn't allow infection to get in. He has been to the doctor everyday since it happened, except for today. The doctor yesterday said we could go one more day before going back in again tomorrow.
Some of his blisters have started to burst, which really stresses me out a little bit. Still, the doctors say we're good to go for now. The great news is that he doesn't act like he's in even the slightest bit of pain. He's still crawling, laughing, bouncing, squeaking, burping, and everything else just like the Liam he's always been. It surely hasn't slowed him down much.

Wednesday, May 5, 2010

Feeling Hot, Hot, Hot!

Well, it has finally happened. I've had five kids and have never once had to go to an ER over major injuries. There were two times Aiden fell head first and we had to take him in to be sure he was okay, but both times turned out to be fine. Liam is bound and determined to be the child who turns my hair completely gray.

I was getting ready to take him to speech this morning, and he was crawling around. I never let him out of his crib until I'm ready for the day, but he had taken off his diaper and peed all over the bed. Anyway, I turned on my hair straightener and went to get a shirt from the closet.

Apparently, Drezden went into the bathroom and Liam followed him. Liam pulled the hot iron down off the counter and held it with his hand. HE SCREAMED!!! I got to him as fast as I could, but it felt like an eternity. He didn't know to put the hot iron down, so it was actually directly on his skin for a few seconds.

I ran his hand under hot water, but the blisters just kept coming. He has a burn in the perfect shape of my flat iron. I feel awful. My power, sweet, accident prone baby!

We got him to the ER as fast as we could, and the dr. said we got pretty lucky. Just second degree and no need for surgery right now. Lucky? Well, I guess so. He screamed for two hours straight, and then they gave him some motrin for the pain. That took enough edge off that he fell asleep.

He is all bandaged up and will see his pediatrician in the morning. The blisters have literally tripled in size and are freaking me out a little, but they're still intact. Everyone tells me it's all good as long as the blisters don't rupture. I hope they're right.

Anyway, there you go. One more piece of proof that Liam is trying to make sure I go gray a lot faster than anticipated.

Tuesday, May 4, 2010

I See a Lot of First Dates in His Future

Liam is working hard on learning to eat. It's been a challenge, but he's making leaps and bounds. I finally decided it was time to take the next step with him, and see how he'd do with self-feeding. Jan (his SLP with ECI) says I need to get over my sensory issues with sticky messes and really let him get into. So, I did.

Here you can see the results of that. As you can see, he needs to be fed naked pretty much every time. He also holds his spoon upside down, or in the opposite hand that he's feeding himself with. Lastly, it seems he gets a big on his face. And arms. And tummy. And in his hair.

Yeah. I see him getting a lot of first dates. I'm not so sure about second dates, though.

Friday, April 30, 2010

Only the Happiest Updates to Share

I know it's been way too long since I've updated. Things have been nutty with selling our house, buying a new one, and all the craziness that comes with just living in our house. I promise things are bound to slow down soon, and I'll be better about posting more often.

I did want to be sure to stop by and leave some AMAZING NEWS on Liam. HE IS TOTALLY OFF OXYGEN!!! Don't adjust your screen or check to make sure no one dropped something in your drink. You read that correctly. Liam is free of his tether. And he is doing amazingly well!!!!! He does still have one more test to take at home to check his sleeping oxygen levels, but that's about it. We are so excited for him.

He's also learning to leave his hearing aids alone for longer and longer stretches of time. He has found his voice, and loves to use it. Hopefully he'll eventually get to a point where he can use his voice to actually form words. One can hope, right?

Saturday, April 10, 2010

Moderating Comments

Some of you may have noticed that I have a regular commenter on my blog who uses Chinese writing every time. I have set the blog up to require comment verification, and that hasn't filter this particular poster out. Clicking on his/her writing will lead you to a pornographic website. To prevent this from happening, I've had to set it up to moderate comments.

PLEASE continue to post your amazing comments. It helps me feel like I'm not talking to the wall when I write. I will approve them all as quickly as they come in. Well, not all. The porn site will no longer be a problem.

Thursday, April 8, 2010

An Exciting Accomplishment for Liam

I've mentioned several times about Liam's oral sensory issues and his difficulty learning to eat. It has been a very slow process with continual progress. He has gone from only taking formula to accepting yogurt to accepting most anything in his yogurt to pediasure. Progress, progress, progress. It's so great to see him making leaps and bounds in something so very important.

So what is the big exciting accomplishment? Banana. Yep. That's it, and it is truly an amazing thing for him. It's not just that he's eating mushed up bananas. Tonight, I took his spoon and just used it to break off pieces of banana.

He took the food off the spoon, moved it to the side of his mouth and CHEWED. HE CHEWED!!! And then, the biggest thing of all...HE SWALLOWED IT!! Go Liam! Since he did so well, I handed him 1/4 of the whole banana just to see what he'd do. He ate it!!! He self-fed, bit pieces off, chewed, swallowed, and went back for more. That kid ate the whole dang banana!!

He is also signing up a blue streak. He isn't quite to where CJ was at his age with signing, but he is catching up. I'm so excited for him and for the amazing steps he's taking in progressing toward becoming the amazing person he's destined to be. I couldn't ask for more.

Friday, April 2, 2010

The Decision Was Easier Than We Thought

We are going to move to the area closest to Byron's work. After lots of research, we have discovered that the ward area we love so much doesn't have one single house in our price range that would meet our needs. That made it a pretty simple decision. I think we will benefit from amazing friendships in the other ward even if we don't live directly in their boundaries.

Thursday, April 1, 2010

Our Hearing Loss Blog Has Brought Us Blessings...and Hard Choices

Decisions, Decisions

I may have made mention of the fact that we are being relocated. Things have really fallen into place and the Lord has made clear that it is absolutely His intention for us to go to this new place. While we hate to leave behind those that we dearly love here, we know there are blessings to be found there. Hopefully we will also be able to bring blessings to those we meet.

We have a big decision to make right now, though. Where should we live? The decision was going to be quite simple until last week when everything changed for us.

A few weeks ago (maybe even a couple of months), I got a message on my hearing loss blog about a boy who was working on his Eagle Scout project. He was creating a blog and a website for deaf and hard of hearing kids like himself to get to know each other and share stories. The poster asked me to put a link on my blog to his and then to write up a story for his website. No problem. I posted the link, and then went over to his site and told him he could use any stories or experiences from my blog he wanted.

Last week, he e-mailed me and said he’d noticed that I had “I am a Child of God” and “Teach Me to Walk in the Light” playing on my blog. He asked if I happened to be LDS. I told him that I was, and he then asked to friend me on facebook. I agreed.
About a day later, I got a PM from him saying that he’d noticed that I mentioned moving to the place we're going to. This shocked him because he lives there. His dad is the bishop of his ward. He was so excited about this. To be honest, I was stunned. My blog has been up for over a year now, and this was the first time I’d made contact with him. It just seemed like things were falling into place.

We exchanged questions and answers, and I learned that his ward has him and TWO OTHER FAMILIES WITH DEAF CHILDREN. There are 3 year old twins and a 9 year old girl who all have hearing loss in his ward. This is totally unusual for a hearing ward. Plus, all their youth know ASL because this young man has taught it to his peers. Built-in babysitters.

I spoke with the young man’s mom the other day, and she describes the ward as if it’s like the amazing one we’re already in. It’s small, but not minute. There are other parents who have already juggled the school district and told us which schools are great vs. which ones are not. Their ward is having a dinner and silent auction fund raiser for the youth on one of the nights we’ll be there looking for houses, and we were invited to join them that evening. We will be there.

Then, my bishop from when I was a youth contacted me to give me the names of some of the people he felt could help us find a good ward. He had lived in this place, and found some good people. That sister called me today and went on and on about how great this young man’s ward is and how happy we’d be there.

It’s very close to the oral Deaf schools, the children’s hospital, and really anything we’d need. The catch? It is about a 30-45 minute commute for Byron. We really didn’t want to consider an area with more than a 20 minute commute. It really feels like we’re being led to this particular ward in some ways. So, what would you do?

Wednesday, March 3, 2010

Confusing Hearing Test No Longer So Confusing

Liam got to visit Dr. Peters today. (CJ did, too, but there isn't really any news there. Honestly, no news is many times good news, right?) We discussed his hearing test from Monday that left us a little baffled about the results.

Monday's bone conduction test showed that Liam might only have a mild/moderate hearing loss rather than a severe/profound loss. We weren't sure what to make of that then, but I feel better about it all now. Dr. Peters reminded me that children with Mondini issues (damage to the formation of the cochlea) may sometimes have hearing that ebbs and flows. In his opinion, it's not a question of if Liam will need a cochlear implant, but when. He is far more inclined to believe the three ABR's Liam has already had.

To be honest, I feel MUCH better about this than I thought I would. I think my heart already knew that Liam is Deaf, and my heart loves that. I love that he is precisely who a loving Father in Heaven meant for him to be. Rather than mourn Liam's and CJ's hearing loss, we'd already reframed so much of it in our minds and learned to embrace and build upon it.

So, we are waiting two weeks to see if his ear infection in his left ear will clear up and then we'll see Dr. Peters again. At that point, we can discuss where we go from here. So, I don't really have any big news. Like I said before though, sometimes no news is good news.

Tuesday, March 2, 2010

Practically Perfect Pulmonology Appointment Today

Liam saw the amazing Dr. Rivera-Sanchez today for his scheduled appointment. You have to understand that we LOVE this doctor for him, and really respect her opinion. I give her a hard time, I think, because I am comfortable taking care of him at home when she would sometimes prefer me to let him be admitted for a night to be sure he's doing okay. As much trouble as I give her, I do love what she does for Liam and Drezden. I love that she listens and really seems interested our needs as a family. As much as we love her, we wouldn't mind it if our sweet boys got to a point where they got to see her for things like Christmas get-togethers or in passing at the grocery store.

Today, we got one step closer to that wish. She was SO IMPRESSED with Liam's progress. His retractions are minimal. His room air sats are normal!!! His cough is almost non-existent. His stamina has increased. By all counts, he appears to be a typical 14 month old baby. We still have a few small things we need to work on, but it's all managable. We are so delighted with his progress as is she. (Now we just need to get her happy with Drezden's progress..and we WILL make that happen).

Byron was asking me last week why it is that we have so many of these challenges in our lives. I think it's because the Lord is blessing us with the opportunity to show Him we can and will endure to the end making our best effort and with high hopes and hopefully minimal complaining. Now, we are being blessed with miracles for our efforts. Liam is pretty ahead of the game for NEHI children. Most of them are around 2 years old before they start considering weening from the oxygen. Did I mention that he's 14 months old and only occasionally uses daytime oxygen?

Yeah. It was a practically perfect pulmonology appointment today.

Monday, March 1, 2010

Baffling, Yet Hopeful (We Think), Hearing Test

Liam had his first soundbooth hearing test today. Trying to do the ABR test, which requires sedation, is really challenging because of his NEHI problems. The goal is to condition him to be responsive in a soundfield situation and bypass the need for sedated ABR testing.

Linda Daniel met us there to work in the booth with him on his testing. Without any hesitation, we got started on his test. As the testing went on, it was very obvious that Liam wasn't hearing much of anything at all. I knew that going in, and it really didn't get me down. Then we moved to the part of the test where we start all over, but with him wearing his hearing aids. With the kind of aids he has, we would expect to see immediate results.

Even with the hearing aids in, we were only seeing about a 60-80db threshold. Not a good thing. On a hunch, Linda suggested that we do the bone hearing test. (I know that's not the correct term for it, but my brain is friend and I can't remember the right word.) They put what looked like a headphone without the foam coverings on him behind the ears.

The idea was that this would put the sound directly into his cochlea, and effectively avoid his entire middle ear. The results? Only a 20-40db hearing loss!!! That's only mild to moderate losses!!!! It would still require him to wear hearing aids, but speech would be much easier for him later.

The truth is that we don't really know what all this means. There are a lot of possible reasons why he was so responsive that don't have a ton to do with his actual hearing, but it's a big question mark right now. We will see Dr. Peters on Wednesday afternoon to determine what we need to do next. It may very well be the bone ABR. (Again, not the right term. I will find the correct vocabulary and come back to replace it later.)

So, that's the the latest news. It's not really real news right now, I guess. But, it is a change in what we thought as recently as this morning, so it's worth reporting.

Sunday, February 28, 2010

Great Blog I Hope You'll Look At

I always try to follow the blogs of those who post on my blog entries. I like to learn what I can about my readers. Each one has something interesting inside them that most always teaches me something about me. As I followed the blog link to a recent poster, I found a link she had posted on her blog to another blog.

THIS BLOG was created by a young man named David who is bilaterally implanted and is working on his Eagle Scout Project. The site will ultimately be the project when he completes it. He is building a site where young D/HoH people can share stories and experiences. He is looking for other D/HoH people, parents, teachers, etc. to send him their stories so he can add it to your collection. I happen to know that the majority of my readers fit that description and have amazing things they can add. I hope you'll check it out, add a submission, and maybe create a link to your own blogs to help David out.

Friday, February 26, 2010

Proof That the Only Thing He Can't Do Is Hear

I've always made it my personal mission to point out that the only thing my Deaf children can't do is hear. I guess it's not highly likely that they'll be air traffic controllers either, but who's really counting?

CJ has always surpassed the expectations of those around him. Byron and I learned early on never to assume we knew what he was going to do next. Thing only thing we can absolutely expect from him in the unexpected. He has a long history of wild and crazy antics. From drowning the fish (literally! Who knew that was even possible?!?!?) to finding ways to practically cut off his finger with a butcher knife to making friends with every single person he ever meets to demonstrating a drive to beat the odds like no one we've ever met, CJ has ALWAYS proven us unprepared for anything he has up his sleeve.

A couple of summers ago, he taught himself to read. When Kindergarten started this year, he told his teacher what the difference is between an octagon and a hexagon. The list just goes on and on and on. This week was the tip of the iceburg. Our little CJ, who they told us would likely never speak (Ha! Couldn't have been more wrong there.) got a letter in the mail welcoming him to the gifted and talented program. Once again, he has proven that the ONLY thing he can't do is hear.

Saturday, February 6, 2010

My Favorite New Quote

My friend, Liza, has a little boy with similar medical needs to Liam. It's nice having someone else who "gets it" when I freak out over every little runny nose. I keep in close contact with her on facebook, and she posted this quote. I feel like it portrays our family to a T.

"It doesn't take a special family to raise a special needs child. It takes a special needs child to make a special family."
I say all the time that I didn't come equipped with the tools to raise these special kids. They have taught me as I go, and God has given me the tools as I've needed them. One day at a time.

Sunday, January 31, 2010

Mommy's Great. Givin' Me Chocolate Cake

We all know Liam has some oral sensory integration issues. He is just not a fan of anything that is not baby yogurt. Solids are an absolute no go. I baked a cake tonight, and knew he wouldn't be a big fan. That said, I also remembered that Jan (our SLP with ECI) mentioned that it's important that we let him "fully experience" his food.
I decided to give him a slice of the cake and set him free. Other than a messy floor and even messier baby, I didn't feel like I had a whole lot to lose.
When I put the first little bit in his mouth, he gasped and sputtered and gagged just a little bit. I decided to just back off and let him do what he wanted to do with his piece of cake. An hour later, he decided he was done. I didn't find any cake left in the area around him, but that doesn't mean he ate it. We have a dog who sits vigilently by whoever is in the high chair making sure no crumbs ever make it to the ground.
At any rate, the pictures tell the story. I don't know what we did for him to help overcome his oral aversions or to learn about what to do with his mouth. But I do know he's going to be a master finger painter. And he had fun. What more could I ask for?
p.s. If you look closely, you can see the frosting and blue sprinkle in his left ear. That's the sure sign of a happy cake-playing baby.

Friday, January 29, 2010

Gotta' Love a Happy Update!

Liam has had quite a week. I'm pleased to say it's been a much better week than last week, too!! First, we visited Dr. Sanchez. Liam is officially off all inhaled medicine except for PRN. Yay, Liam!!

I also discussed the fact that it is a NIGHTMARE keeping the O2 on him. It's like the little stinker stays up late at night thinking of creative ways to take it off or something. The other day, I checked his sats and noticed that he was at 97% on room air. That's very good, so I gave him a break. I did this about hourly throughout the day. He spent EIGHT HOURS off his oxygen, and maintained his sats at 97% or better. Good job, Liam!! As I said, we discussed this with Dr. Sanchez and came up with a compromise. Liam can be without his oxygen on as long as we're home and I'm checking his sats very regularly. They have to be at 94% or better, and he can stay off the canula. The second it dips, or if he's sleeping, the canula needs to be on. I think that's a fair compromise.

We also had a very productive appointment with Ms. Linda. She had Liam practice tracking sounds, and he did pretty great despite being tired. The problem he has is leaving his aids in at all. We get maybe thirty seconds at a time if we're very lucky. Otherwise, we have to put things on his arms to keep him from being able to reach the aids and pull them out. We're trying to work on a plan for dealing with it, but so far, Liam is winning the battle.

While we were with Ms. Linda, I mentioned his eating issues so we worked on some of those. We now have a plan to help him learn to work through having food in his mouth. He is very clearly a hungry little monkey, so this will be a great turn of events.

And, the final piece of great news? Dr. K called last night. His testing shows that he no longer has any C-Diff in his system!!!

Sunday, January 24, 2010

Sometimes the Right Choice is the Hardest One to Make

Having a child like Liam who has the needs that he has sometimes leaves me questioning my Mommy instincts. I know I'm a good mom for him, but I don't always know what is the best choice in certain circumstances. This week has been a long and trying week, and my instincts have been tested to the extreme. I am proud to say that I think I did all the right things.

For the past week (almost two weeks as I write this), Liam has had a little cold with a yucky cough. I've had a hard time trying to keep his sats up, particularly when he first woke up. I was already a little out of my comfort zone since we've switched pediatricians with the departure of our favorite Dr. M. I don't know Dr. K very well, but I do know that it's clear he's been doing his research on Liam's case. I'm grateful for that. During the week, we had seen Dr. K. about three times. He instructed me on how to deep suction Liam's nose when he's congested. He can't have decongestant meds, so that was really our only choice. When his nose is clear, he can breathe through his canula, which is really important. He also taught me how to do CPT for him to loosen all the mucus. I hated torturing Liam with the suction, but it was working to help keeps his sats up.

Wednesday when Liam woke up, nothing I did would keep his numbers high. He'd had a rough night Tuesday night waking up coughing until he vomited and then just collapsing asleep when his coughing fits were over. He was clearly exhausted from all the coughing. I knew something wasn't right and that I needed to get more help for him than what I could do at home. I called Dr. K's office, but 2:15 pm was the earliest Liam could be seen and I knew he was struggling. I also contacted our pulmonologist's office and consulted with the nurse. She suggested that Liam really needed help as soon as possible. I agreed, and we headed in the direction of the Children's ER. It's a little over an hour's drive, but would land him in the care of the best dr's for him. At least that's what I was told would happen.

I arrived just after noon, and went in. They saw that he had his O2 with him, so he went to the front of the line. The nurse checked his sats, and he was at 92%, which isn't quite high enough. She had us wait a little longer before taking him back because he needed to be in his own room away from other kids who could make him sicker. She explained that he had his own oxygen and other kids didn't so he could wait longer. Okay, but now he's waiting in a room full of really sick kids and not satting high enough. Whatever. I could see that the ER was packed and was willing to wait for him to have the private space.

Finally he got to his little ER room, they gave him one breathing treatment to bring up his sats and took his history. He was seeing a resident doctor, who I think might have just recently hit puberty, but was sure she knew all the right answers for Liam. This is the exact information I gave them:
-He has had a cough with his sats all over the place for the last week.
-The pediatrician has him taking breathing treatments every two hours with CPT about every four hours.
-His ear is draining huge amounts of green thick discharge. This is new and wasn't there the day before. He is Deaf, and his ears need to be protected.
-He is just recovering from C-Diff, and has missed the last two doses of the medicine for it because we've been so focused on the breathing issues. He needs the next dose asap because we're just now having normal poop after six weeks of not having that.
-His pulmonologist was going to call ahead to let you know he's here and what to do with him since his lung disease is rare and needs to be treated a little bit differently than others.

The response the "doctor" gave me was the following:
-Yep, his ear is draining. Interesting.
-We all have C-Diff in our intestines, and your pediatrician may have jumped the gun a little bit in giving you those meds.
-The pulmonologist wants him admitted, so he's on a list to get a bed.

After the dr. left, Liam was taken for a chest X-Ray and tested for a variety of viruses. I explained that Dr. K. had already done both of those things on Monday, and that all were clear. They wanted to check again anyway. Okay. Fine. Check again. When he returned from the X-Ray, he received one breathing treatment and 30 minutes of IV fluids. It was noted that, at that point, he was well hydrated, so I have no idea why the fluids. But, okay. I can just suck it up and deal with all of this until he gets to his own room where the pulmonologist can take charge of his care.

Liam went to sleep during the breathing treatment and stayed that way for a long time. In total, he slept about four and a half hours. During that time, his nurse informed me that he'd have to go to a "holding annex" to wait for a room. I picked up my sleeping baby, who didn't even bat an eye and slept through the whole move, and followed her to the annex. It was one big room full of children with confirmed illnesses all divided by little curtains. There was one sink in the room. It happened to be in Liam's little curtain area. Great. Now everyone is rinsing their puke buckets in my child's area.

I was starting to get really nervous about this situation because I know how easily Liam gets sick, and how much damage it does to him. I spoke with the nurse and explained the situation and that he really couldn't be with all these kids. Why take him from a private space to one full of very sick children??? She called in the same very young doctor we'd seen, and explained the situation. Since the doctor was there, I again mentioned the C-Diff issue and that he really really needed that med. "He has C-Diff? Well, he should be in isolation then". Great!! Whatever gets him isolated I am happy to go with. They STILL didn't get him the meds for his C-Diff, though, and it's a drug to be taken every six hours. By this point, he'd missed a good four doses and the clock was still ticking.

The very sweet nurse tried to get him into an isolation room, but none were available. No matter. I was told he'd be on the top of the list to get a bed when one came open. Okay. Fine. I will wait a little longer.

Strangely, all the kids around him got into rooms. Go figure. I was livid. One of them was sent to the pulmonology unit where Liam REALLY needed to be!!! I was hopping mad, and brought it to the new nurse's attention. (There had been a shift change during this whole time). She said, "You're right, but that child went to a two bed room." Okay, I get that, but then at least he was only sharing with ONE other child. Liam was in a space that was starting to fill up again with up to twelve other children. I was willing to take my chances.

By this point, I was just in tears and beside myself. I was questioning my decision to bring him, worrying sick about the C-Diff issues, and it felt like I wasn't even thinking straight anymore. The on-call pulmonologist came in to see him. We'd met him before during our long summer stay. He was kind, but doesn't know Liam's case. He wanted him to have inhaled steroids. Fine. Whatever. This guy always wants to give steroids.

I waited another couple of hours, still begging for him to get out of that situation. Nothing. Finally around ten, the charge nurse came in and said, " I think we have a plan for him until he gets a room." My response? "No. We're done here. We are going home. Please page the pulmonologist and tell him we're leaving. I don't want anything to do with the little resident. She is full of it, and won't listen to my concerns. We are leaving. Now. Please make arrangements."

I couldn't believe I'd just done it. I was so angry, though, and hurt that they'd acknowledged a need for my precious baby to get medical help, but then denied him what he needed. My head was spinning. I knew that, if anything happened to him that night, I'd live with a horrible guilt for life. But I also knew that staying any longer was like a death sentence in terms of what diseases he was picking up sitting there.

The nurse called the doctor and came back to ask me if they had gotten a chance to note his sats while he was sleeping. ARE YOU KIDDING ME?!?!?! The child slept for FOUR AND A HALF HOURS!!! How did you NOT know this?!? How did you not notice him so out of it that he slept through the entire transfer from ER bed to holding annex hell??? That was enough for me. I took him and left.

I sobbed all the way home. I was just beside myself with worry and anger and frustration and the whole thing. It was the worst feeling ever. I called Jo on my way home, and she talked to me the whole hour plus drive.

The next morning, we went directly to Dr. K's office. I told him the whole story through tears. He was so compassionate and understanding...and pretty sure I needed a nap. Really? The three restless hours of sleep I'd gotten wasn't enough? Hmmm...

I pointed out that, in the ELEVEN HOURS that I was there, Liam had received:
-One breathing treatment
-One 30 minute IV fluid treatment for nothing
-One inhalation of steroids through an aerochamber.

He validated my decision and said that, if Liam is ever in that much trouble again, I don't need an appointment. I can just bring him in. If he is there, he will see him and take care of him and not let him suffer anymore.

We checked his sats and listened to him. He was doing better. The problem? He'd begun throwing up that morning and wasn't wanting to eat. My worst fear was rearing its ugly head. C-Diff was coming back in full force. Dr. K and I decided to watch it during the day with the understanding that I could bring him back at any time if I had concerns about the C-Diff. He also gave me some drops for his ears, BOTH of which were now infected and oozing.

Liam played well, took a long nap, but still refused to eat. Then the diarrhea started. I took him back to Dr. K's office where we determined that he needed to be admitted for IV fluids. Gaaaah! I was so angry. This whole part could have been avoided if they would have just listened to me at Children's in the first place.

The irony? Liam's pulmo called me and asked why he wasn't at the hospital when she went to see him. I told her what happened, the whole story, and that I'd gone down there trusting that he would be taken care of and fully prepared to stay through the weekend if I had to. She told me she'd called ahead and told them the following instructions for Liam:
-Regular breathing treatments with CPT
-Listen to the mother. She knows what she is talking about and will only bring him if something is really wrong.
-Keep him away from other sick children.
-Admit him to his own room.

I think we have a plan now. When Liam is really struggling, Dr. K will see him and consult with our pulmo. Depending on what he needs, we will decide if he needs to be admitted here or at Children's. If it's Children's, he will be directly admitted to his own bed. I feel better about that.

So, now that you've read through this loooooooong post, you see why Mommy instincts are sometimes so hard to read. It seemed to be against all logic for me to take him from the hospital that could help him, but I did it anyway because my gut told me it was the best choice. I'm so glad I did. I am proud to report that he seems to be on the road to if we can just get him to leave his oxygen on....