Wow! What a week! We drove 10 hours home from North Carolina on Sunday, then we traveled back and forth to Philly on Monday, Tuesday, and Wednesday. Then today was Lucas' IFSP (baby IEP) 6 month review. I'm ready to do nothing tomorrow, but I need to get my classroom ready for the school year. My pretend life as a stay-at-home is soon coming to an abrupt end. I will just have to look forward to next summer.
Our appointments went alright. Nate and I went without Lucas on Monday for our CI information meeting. I will admit that I didn't learn that much, but it was still nice to talk to someone about it and I got to see the implant and processors. We also discussed the three different companies that make the implant, so that we can make an informed decision on which one to choose. It's like picking out a car. We get to choose the make/model, and even the color!
On Tuesday we met with the AV therapist for an evaluation. Because he doesn't react to any sounds, we didn't really get anywhere, but continue to learn AV strategies, that we will definitely be employing when he gets implanted. It's not too early to learn these strategies.
Then we met with audiology on Tuesday, for new hearing aid molds and booth testing. Testing was quick, because we didn't get any responses. We'll try again next time. Nate and I also decided to get Lucas blue and white swirl ear molds. I thought it would come just in time for Penn State's football season. When Erin (our awesome audiologist!) asked if we wanted to get something other than clear, Nate and I both responded "sure, why not?" I think it's a good indication that we're finally accepting his hearing aids. Before we wanted to draw as little attention to them as possible, and now we want to add a little flair. Tuesday was good, because we like to chat with our audiologist(s) quite a lot! (Melissa too, if you're reading!!)
On Wednesday we met with Lucas' new ENT doctor, Dr. K. We learned 2 things. First, the MRI we had done on July 3 was not good enough. I'm not so happy with the local MRI group right now for their lack of knowledge and lack of professionalism for not calling me to let me know that they didn't know how to effectively perform the scan that I requested. So, he will have a repeat MRI next Wednesday August 20. Yippee.
The doctor also found fluid in his ears, although there was no infection. He wants to put tubes in his ears, so that when/if he's implanted, it won't postpone the surgery. I guess if there's either fluid or an ear infection, they won't implant. So, that surgery will be some time in late September or early October. I'm still working on those details. It's a simple procedure, that's supposed to take 7 or 8 minutes, but they still have to put him under general anesthesia.
So, we got some news we weren't expecting, but generally we had good appointments. I was hoping to have Lucas under anesthesia only 1 more time in the next 6 months, and instead it will be 3.
Although everything still looks good for CI candidacy, Lucas has definitely not been approved yet. We're still at the beginning of the process, with quite a few steps left before official candidacy. I talk about it a lot though, because I just have to believe that it's going to happen. It's our only hope.
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2 comments:
Busy month! CI candidacy is a long, hard process -- but it will all be worth it in the end! I applaud you for taking the time and doing all the research to get the very best for your son! Way to go! Also, love the idea for team-spirit earmolds. Accept and revel in your son's hearing devices -- they are his key to the world! Best wishes as you continue your hearing journey!
Sounds like you guys have really been on the move! That takes a lot of love and dedication to your son. I can only imagine the energy it must take, but I'm sure that smiling face back at you must make it all worth it.
There is a young boy in our neighborhood from Australia who was also born with profound hearing loss. His parents also went through the same things that you did. ~ In short, he is now successfully implanted with his choclear implants, reads lips like a champ, and tells his parents where to stick it if he doesn't feel like cleaning his room. ~ All of this to echo Elizabeth's thoughts that I can only imagine what a long road it is, but I know it will be worth it for you. I admire how much you do for Lucas. Goodonya!
Sunny and sweltering down here in Alabammy. Not a whole lot new to report. We've been visiting with family a good bit and slowly trying to get our house in order. I can't believe the school year just started again! Where does the time go?!
Keep on plugging!
Jen
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