TOMORROW IS THE BIG DAY!!!!

A trunk filled with CI equipment and 2 bags of educational material....

Yes, I know it’s been a long time since you’ve read a post but I’ve decided that it was better for me not to write about the last 2 ½ weeks. (Put it this way, Matthew’s little body only slept and was restful for about 4 out of 24 hours for many, many days straightJ) Just know they have been very difficult on us and on Matthew, but we are SO excited to be embarking on the next part of this journey.

TOMORROW morning at 11am we head to CHOP for Matthew’s cochlear implant to be activated!!! OK, to give you a brief rundown of the cochlear implant journey we’ve been on, here it is:
In April, we met with the coordinator for the programs so that Chris and I would learn about CI’s and pretty much were scared to death! We needed to be committed as parents to the entire process, and we surely were.
Matthew then went through a bunch of tests including CT and MRI scans of his head looking at the structure of his ear, and to be sure he had an auditory nerve, which is responsible for his hearing. Without it, he wouldn’t be an implant candidate. The good news out of those tests was that his ear structure was perfect, and the hearing nerve was intact. We weren’t expecting all of the other stuff we were told about with his brain findings, but hey, we had what we needed for the cochlear implant. Then, he needed to have an EKG of his heart, as there is a syndrome in some deaf children where they have a prolonged QT interval, and if they have that, Matthew couldn’t go under anesthesia without clearance from a cardiologist. So, of course Matthew had the prolonged QT interval and we then went through all of the additional testing needed for that, and thankfully his 24-hour holter only had a mildly prolonged QT so we could proceed. Also, we had to go down to CHOP in July for Matthew to undergo an all day testing process from the audiologists and speech therapists there to assure he was a candidate. In between that, we met the ENT surgeon at CHOP and then the CI team met to determine if Matthew was a candidate and we were committed as parents to the long road that follows the surgery with his therapy and training, etc! We then met the surgeon one more time to sign consents for the surgery and get a date. Chris and I then had to attend a mandatory parent/professional educational class to learn more about the implant and roles we had after the implant was activated. Then, we had the CI surgery.
During the surgery, the surgeon removes all of Matthew’s hair cells that help produce any sound and destroy any possibility for him to hear on his own. He places the transmitter that is coiled and shaped like his cochlea into the skull and there is a magnet underneath his skull where the electrodes attach. After surgery, they test all of the electrodes to be sure when stimulated, they pick up sound. NOW, Matthew’s brain has to do the rest and be able to interpret sounds! His hearing age will be 0 months when he’s activated, but if his brain responds and interprets sounds, we may be able to catch his hearing up with intensive auditory training.
Matthew went and got all of his CI equipment last Monday at CHOP, and everything filled our trunk, NOT KIDDING! The box with just his speech processor and remote devices is HUGE, we couldn’t believe all that was given to us. Overwhelmed is putting it mildly. (WE HAVE A LOT TO LEARN AND WILL WRITE MORE WHEN WE UNDERSTAND THINGS MORE!) We were oriented to the processor, which just goes over Matthew’s ear like a hearing aid, but nothing actually goes IN his ear, which he likes. The other piece has a magnet inside and attaches to his skull connecting to the internal magnet. When hooked up, the audiologist will make his remote and the processor in sync with each other, and every electrode will be tested before turning it ON! When the implant is activated, all we are looking for tomorrow is some sort reaction from Matthew. They have told us that little kids may be scared, scream, turn quickly, smile, or even cry. We don’t care what his reaction is as long as we get a reaction! This is the miracle we have been praying and holding on to for months!!!

So, what are we feeling right now? I think every emotion possible is going through me right now. And, would you believe that tomorrow is the NINE-MONTH ANNIVERSARY to the date that we held Matthew in our arms for the very first time??? He walked into the room in the orphanage dressed in his big red coat with shoes way too big for his little body, and came right to us. He shed one tear, and held his face so close to ours. Back at the hotel room one hour later, he was laughing, giggling, eating and snuggling with Chris and I. God surely knew what he was doing when He made us a family! We certainly have had an interesting road these past 9 months filled with over 60 doctors appointments, procedures, tests, and has been under anesthesia 7 times. We have been told our child was deaf, our child could possibly have a progressive neurodegenerative disorder that only time will tell, our child could possibly have macular degeneration and could go blind…………all these things have been told to us, but guess what? None of it matters when you get to experience the love and the bond that we have with this precious child. This child who has the most amazing smile and the greatest giggle in the world….this child who lights up a room of people in about 2 minutes flat…this child who is fascinated with cars, trucks, buses, and trains…this child who cannot talk or hear, but can communicate with us in the most amazing ways…this child who has taught us that love will always get you through things!

I was so blessed this past week to be able to experience Matthew’s first Halloween party at his daycare with his friends…seeing him at the table with his treats and friends brought me to tears. Then, I got experience his first Halloween trick or treat night with him. Chris and I weren’t sure how he would be as we tried to get a pumpkin costume on him, and he didn’t like it at all. But, then we took him outside and showed him how to hold his pumpkin and we went to our 3 neighbors houses where they all gave him fun treats in his pumpkin. It is tradition in our neighborhood to sit outside and hand treats out to all of the kids…Matthew then decided HE was going to give out every piece of candy to all of the kids. It was absolutely precious, and HE GOT IT! Even though we couldn’t TELL him what was going on, he GOT IT! He then brought me to tears again…

So, tomorrow on our 9-month anniversary of being brought together as a family, we are going to experience the miracle of giving our child the opportunity to hear for the very first time. We have to manage our expectations but to just be at this point where he may hear something for the very first time in his life is a miracle. We know it’s all up to Matthew’s brain and that it’s going to be a long road of speech therapy and Chris and I doing auditory training with him, as he will have no idea how to interpret sounds– but it’s OK. We are ready for whatever comes at us, and we are beyond excited/scared/nervous about tomorrow, but you know what? Matthew will get us through it…keep those positive thoughts and prayers coming. They have worked for us as parents, and for our precious, miracle child.