When a parent learns that their baby or young child has a hearing loss, they are often left feeling alone and unsure what to do. We've been there and done that with one Deaf child already, and we've just started the journey again with our newborn son. In addition, we learned our baby also has NEHI, a rare form of childhood lung disease. We hope that sharing our experiences will help inspire and encourage other parents of children with hearing loss or who may also have NEHI.
Friday, September 17, 2010
Fun Liam Updates
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!!
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
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
Audiology
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
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

Friday, August 20, 2010
School Has Started!


Finally Moved and Ready to Blog Again
*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
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!)
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?"
"Five"
"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.