So much has happened it’s been hard to update.
We have had visits to Lucas’s entire cleft team, as well as our psychiatrist and the councillor Lucas sees. I had an appointment every single day the week before Halloween … either for myself or one or both boys. Halloween itself was fun but very busy. More on that later.
Here is a rundown of Lucas:
Orhtodontist: We got a prescription for Ativan, and made one more appointment to try to put the expander in Lucas’s mouth. He refused to take the Ativan. I tried to hold it under his tongue by force (bad mom, I know, but I was desperate) but he spit it at me. We were not successful getting him to even sit in the orthodontist chair for the expander. We had to follow through on our deal, and take away his game boy. We have decided to try to go back to the removable expander, and Lucas can get his game boy back if he co operates with that. I am hopeful, since he has had removable expanders before, and knows what to expect, so is likely to co-operate.
Speech Pathologist: Lucas’s speech has improved since the last time the speech therapist saw him. He still has nasal air emission on his /s/ sounds, but no longer has any on his plosives, which are the /t/ /d/ /b/ /p/ sounds. She was pleased with the change, but wants him to have some speech therapy to help him remember to send his air out his nose for his /s/ sounds. He can physically do it, but he needs to be re-trained. In her words : ‘Imagine if I told you the way you had been doing a /p/ all your life was wrong…it would take you a lot of practice to learn the right way.’ The reality is that the school board, who is supposed to be providing him speech therapy, doesn’t have the resources to provide it to him, since he is very intelligible. They can only help the kids who are desperate for speech therapy, which Lucas isn’t. We will have to go privately. The speech therapist is going to help us with an application to Variety for funding in the spring. We just missed the fall cut off date for applications. It’s nice that she will help with the application – it takes some weight off of my back.
Ear, Nose and Throat: Lucas has one tube out and one tube in. The pressure in the ear with the tube out is normal, indicating that there is no build up of fluid. There is also no hearing loss at this time. So we don’t have to rush in to replace the tube. That’s a relief.
Plastic Surgeon: The plastic surgeon has put it out there for Lucas to consider having some work done on the tip of his nose. We all agree that since it is not a functional issue, it is up to Lucas if he wants to proceed. The surgeon said he is sure he can help the nose look better, and that it would be a day surgery. Lucas seemed a bit interested, but declined to decide. I am not at all concerned about his nose, so its up to him.
Psychiatrist: We are trying to move Lucas from Dexedrine to Stratterra. I am looking forward to not having the side effects of the Dexedrine: namely, the sleep issues and the lack of appetite. So far, we have added the Stratterra but not backed off the Dexedrine. The psychiatrist said that if we are going to give him meds, it makes a lot more sense to give him the best meds available. I tend to agree. It’s always hard to make a med change, but I think this one is necessary.
Here is the rundown on Coram:
Coram has been doing extremely well. He has not missed a day on the buss or at school for three weeks at least. There was one day last week where he was saying he wasn’t going to go, and grumping about the house all morning, but when the bus came, he ran out and hopped on. It was real progress for him. His home notes all indicate that he is focused, more positive, and completed more work. I am feeling a bit less tied to the phone, as it hasn’t rung to tell me of an emergency for some time now.
Here is the rundown on Halloween:
Wow, did Halloween ever become a huge event. We went to the train park up at moms, and went on the ‘Hobgoblin Express’ train. They had a scary haunted train car that only Grandma went through, and another one all decorated for kids. They also had a mini train that went around the train park, and the route was all decorate with pumpkins and lighted decorations. It was nice because it wasn’t at all crowded like things in the city. The next night, we went on the ‘Ghost Train’, which is the local Halloween train. This one was extremely busy. I had to go at 3 and stand in line for an hour to get tickets, and by then the earliest train was 7:30. We went with grandma and Jama, Sky Keith and Aiden, Uncle Tai and my cousin Jordan. It was a good time. Lucas was really funny – he said there was going to be a giant frog, and we all laughed at him. But he was right! I have no idea how he knew that.
In the middle of all of that, Steve’s boss gave us tickets to the Canucks Super Skills show. This is the first time we have seen the Canucks live, and it was a lot of fun. They compete against each other at skills like speed skating and slapshots.
On Halloween night, we went to moms to trick or treat. It’s a bit of a drive, but the kids like going there because they like to trick or treat with Jama, and they like the neighbourhood. It was super cold though. Coram had a really hard time with it. He had a meltdown because he didn’t want to put a jacket over his costume, but he didn’t want to be cold. It was hard for him – he was completely immobilized by being upset. The really good part is that he was able to recover. He came inside, had a big cry, then calmed down and went out. In the past, he would have been upset about how much time he missed, and not gone at all. So in all, it was a success.
And that’s the uber-long update. The days are whipping by as we proceed towards Christmas. Lucas has been invited to go to a real Canucks game with the organization that ran his cleft camp. He is pretty excited about that. I think it’s cool he’s getting some special treatment to distract him from the misery of appointments, orthodontics, and surgeries.