A lot has happened since I have last posted. I thought I’d be more diligent with posting but it turns out free time limited and when it finally does present itself it is usually used for sleeping. #newmom
Now I know most of you follow and like most of my Facebook photos so you already know majority of this, but for those of you who aren’t as up to date let me fill you in, 6 weeks ago James turned 6 months old and within that week he cut two teeth, started eating real food, and started sitting up unassisted. My heart exploded with pride, but it also was a lot for this momma to handle! Like how am I supposed to be okay with how fast he is growing up? Seriously though… HOW IS THIS HAPPENING SOOOOOO FAST?!? I went through his photos from when he was first born and bawled my eyes out! He was so tiny and that felt like yesterday. Too fast. I may or may not push him down when he acts like he’s going to crawl. Too soon James. Too soon.
*Side note I don’t think the hormones everyone talks about have affected me at all. 😜*
As most of you know James was diagnosed with bilateral sensorineural hearing loss at 3 months old, meaning he was born permanently deaf in both ears. His left ear is severely deaf and his right is profoundly deaf which means he can hear nothing out of his right ear and only very very loud noises out of his left ear or if you’re close enough to his left ear he can hear “shhhhh” or “sssss” sounds. If you see me get close to james’ left ear when we see you its because I’m “shushing” to get him to smile for you. He likes you, but he likes listening more.
About 2 months ago James was fitted for his first pair of hearing aids. It was pretty cute/heart wrenching watching him hear stuff for the very first time! If you haven’t seen the video of his hearing aid activation do yourself a favor and go Here to watch it. Be prepared to cry though! It’s pretty stinking adorable.
With his hearing aids in he can hear better out of his left ear and still nothing out of his right ear. We go every three weeks to continue testing with his amazing audiologist but so far what we know is he can hear stuff better with the Hearing aids in but still not quite good enough for him to understand speech. So what that means is “bliss” “miss” “kiss” “diss” all sounds like “issss” to him. He can hear it, which is good, but it’s just not quite good enough.
So now we’re definitely on the path to cochlear implants. With the implants he’ll be able to hear speech and sounds, but very differently than the way we hear sounds. It’ll take a lot of therapy, teaching, and hard work from both me and James for the next few years to train his brain to hear. The thing I want to stress to everyone is even with the CI’s (cochlear implants) James will still be deaf. This surgery doesn’t “cure” him. He will still rely on social cues, expressions, and lip reading to understand you. It’s not like he is vision impaired and then puts on glasses and can see normally. With his implant he will hear, just not the same way we do. You can google what CI’s sound like, but everyone processes the sounds differently so there’s no exact way to know what he’s hearing. (I think… I’m actually not a pro on this yet.)
We aren’t technically approved yet to get the implants, but we have already passed the MRI scan and have shown consistent results in the audio gram proving he isn’t benefiting from hearing aids so the likelihood is high that we will be approved. And if he isn’t approved then we will move full force into sign language. Which is an eventual goal for him anyway so It’s not plan c it’s just a different route to start. I’d love for James to be bilingual!
Thankfully we live in Pennsylvania and they have amazing early intervention services that come to the home and help teach James free of cost!! Since James isn’t hearing much he will likely fall behind on milestones. The goal of early intervention is to help make that not happen/do what we can to keep him on track with his listening peers. We meet with a teacher of the deaf every other week for now and we will be adding speech therapist weekly to our appointments as well. I love early intervention. They’re amazing.
So far James is doing an amazing job at meeting milestones. We’re getting some more sounds out of him instead of just squawking, and he’s waving or grunting at people to get their attention. He’s a little behind on babbling but it’s hard to babble when you don’t know for sure what that even sounds like!! I’m constantly working with James to associate sounds with objects, signs with words, and practicing communicating back and forth. It’s exhausting, but worth it. HE is worth it. All of it.
How can I help James!? I’m glad you asked!!
– James and I would love if when you see him you wave to him hello and goodbye. We’re learning basic sign language right now and we want to reinforce that as much as possible! Also it’s super cute seeing him wave so you will want to see that.
– Right now we also are working on the basics of communicating so if he squawks at you or blows raspberries, look at him and talk back to him or blow raspberries back to him. Then wait for a response, If he does respond praise him or keep going. But I warn you he can go on for awhile. So be prepared to hear some Loud noises.
– We’re working on him recognizing his own name so If you call his name and he looks your way praise the crap out of him! He loves big facial expressions and hand movements as a reward. If he doesn’t look after three times. Tap on his shoulder and call his name at the same time so he can put the two together.
– If you see a cat with him, point to it and then meow. If you see a dog, point to it and then bark. Bonus if you can sign those things to him too. Any sound association is appreciated.
How am I doing?
Being a full time single mom, working to provide for both James and myself, and keeping all therapy sessions and doctors appointments has proved to be quite challenging at times. There are days where I just sit in amazement that I’m doing it. Like I can’t actually believe it. And then there are days where I just sit and cry for hours.
Doing it alone is hard.
Harder than I actually imagined.
Being alone is harder.
I’ve got no one home with me to laugh with when James does the silliest things. He seriously does the cutest things and it’s just me who gets to see that. That’s hard.
You always want what’s best for your child, and I feel guilty that I can’t always provide the best most normal life for him.
Thankfully my mom has been there for me every step of the way. I don’t know how I’d ever thank her enough for all of her help. She really is incredible. I always feel bad that she is endlessly helping me with appointments, laundry (seriously he’s so little how does he create so much laundry!?!?) cleaning, decorating, landscaping and watching him so I can go work. She’s amazing.
And my other family members are incredible too. My village is seriously perfect for me and James and I am so thankful that they’re ours !!
So that’s our update for now!!