Long time... No update

Ok, ok, I know, I've been neglecting the updates. I'm actually kind of shocked and honored by all the requests for what's going on with our precious girl. I thought once surgery was over people would lose interest. I was wrong, for the last month I've had several requests, so you ask for it you got it. I'm really humbled that so many are following our story still. I still feel like wow all of you want to follow our little ol' family.

So what has little Miss Molly been up to. Well after her first activation, she has hit the ground running, making progress leaps and bounds. Her speech therapist continues to comment that she is floored with how quickly she is picking things up and her new ear is catching up quickly. She started saying mama back in July and dada followed probably three weeks or so later. She also started saying uh,uh,uh for up,up,up around August. Sometimes she even says bye bye. Lately she sees a horse and makes the tongue click sound, which in therapy is the noise we make for a horse. Also when she sees a car, she makes the vibrating lip roll b sound, also a therapy noise for car, you know like a raspberry sound, but without the tongue out. She calls Adam, Ada. and when she wants to eat makes a lip smacking noise. This is all due to the hard work we do in therapy. Which is once a week in the office and then I get a lesson plan for the week and am supposed to do an hour a day. Which translates into using therapy words, games, and songs all day, so I don't have to worry about her getting enough time in. She really loves sound and listening! She is so vocal all the time, I'm sure we will have more words to add to the list very soon! She loves music and even dances whenever she hears it.

We went to Emory genetics and found out that Molly had a 1/4 chance of being born deaf and that Adam has a 3/4 chance of being a carrier for connexin 26, which is the gene mutation for deafness. Aaron and I have not been tested yet, kaiser makes us do that in house, but we more than likely are carriers of the mutation as well. 

The end of last month Molly had surgery number two, which went even better than the last time. She did awesome and had very little swelling and was completely our little Molly who gets into everything within a week. Oh yeah she started walking full time around 14 months and I swear is trying to run a lot more lately. The doctor was really happy with how she healed and he did an excellent job, her scars are so small. Just Friday we went to the audiologist and she turned on Molly's other ear, video coming as soon as Aaron uploads it. She did great and the audiologist was super pleased with how well she responded and that she was already detecting really quiet sounds. She is  adjusting well to two ears, but is giving me somewhat of a hard time keeping the new one on, which is a normal part of the process.

So I've had a lot of questions about why activation is three weeks later and about her processors, so I'll address that too. Ok first, the space between surgery and activation. The implant itself is placed in Molly's head and cochlea during surgery. It's what picks up the sound waves and translates them into electrical impulses to send to the brain. However, until the processor is hooked up the implant is not switched on. So activation turns it on and the processor sticks on her head with a magnet and tells the implant how to tell the brain what it's picking up. Second, Molly currently has two different processors both made by advanced bionics,but very different. Why two you ask, because in between surgeries AB came out with brand new amazing technology and we can get the very latest for Molly on the insurance dime. Her first processor is called the Neptune and is waterproof, cool right, so that means pool time and baths all with sound! It comes in really cute colors and is worn off her ear. The new one we just got, and will be transitioning both ears to, is called the Naida and it's amazing. It is worn over the ear and has a ton of cool features, like background noise cancelation and the ability to stream anything with Bluetooth directly into it, so tv,mp3 player, phone etc. you can learn more here http://www.advancedbionics.com/com/en/naida_ci_q70.html if you are interested. It is not waterproof, but might be adapted soon, until then we still have the Neptune! 

All in all it's been a very busy and exciting couple months. We are so blessed by all your outpouring of love and support and it has been amazing to watch God's hand in all of this. He really is in the business of miracles!

Surgery and beyond

I have had several requests for details of Molly's right cochlear implant surgery, so here's a window into that weekend.

We got the call on the Wed. before saying that surgery would be at 9am, so we had to be at the hospital at 7. Phew, I was so glad to hear that we didn't have to be there at 5:30. This was also a great time because Molly was used to eating at 8am, so we didn't have to hold off a hungry baby for that long. Also unfortunately they informed me that the hospital had banned all media that weekend due to standards committee being there ( basically people going around making sure that nurses, drs, etc are doing their jobs properly). Dr. Hermann's  nurse Patricia said we could still have the news come if we wanted to wait until June, of course I was like "NO WAY" we had been waiting for this day for a long time, no news story is that important! I was also relieved to not have to try to keep it together and look cute for tv.
Thursday night we meet with my sister and my brother in law for dinner, they were watching Adam for us and then went home and put Molly to bed. I held her really tight that night and prayed over her and her sweet little spirit. Aaron and I also prayed for a good while that night, so I should have been at peace right, nope. Worst night of sleep ever, I think I maybe slept 3 hrs total. I knew deep in my heart that everything would be ok and that "God's got this" (as a dear friend reminded me), but I just couldn't fully rest. So I would wake up, check the clock and pray some more until I drifted off, this happened several times.
Friday morning I woke up my sweet angel and squeezed her so tight and we packed up and headed out. I must say everyone at Children's made our time there so much easier. Everyone, from the people at registration to the nurses, just gushed over our sweet girl. We went to the pre-op room and all the nurses and staff were so great. We put Molly in her cute little hospital gown and before we knew Dr. Hermann came in and told us we almost ready to go. I don't know how many of you are acquainted with him, but he's so nice and so calm, it makes it so easy for us to put our little girl in his hands. I truly praise God for bringing us to this man! Then in what seemed like only moments later Deana, his sweet surgical nurse came in and told our baby girl she loved her and it was time to go. Molly must have sensed that she was a wonderful person because she went with her and didn't even cry, Molly just waved her cute little goodbye and gave Deana a big squeeze. Deana later told us Molly didn't cry at all, but was just frustrated that Deana kept putting her mask up so Molly couldn't see her see her mouth. They updated us while we waited, and both calls were nothing but great reports. It truly helped to have not only Aaron, but my mother in law, mother and father with us. Also we had a wonderful nurse, who was definitely cut from the same cloth as me, to talk to and pass the time. I most definitely cried, but I was not the mess I thought I would be and I attribute that to all of your prayers/thoughts and having such a support system with me. Just under two hours later, she was out and in recovery. Dr. Hermann came in and said that it went as smoothly as it could and that everything was just perfect when he got in there. Then his audiology team came in and said all the tests went well too and the implant was working perfectly. They even brought in her processor to show us, Molly will be stylin with her pink and purple Neptune! Then we were whisked up to the post surgical floor and they wheeled in my little girl. She saw me and immediately began to cry, the first time she had all morning, and I picked her up and let her know it was all ok because Mommy was here now. I am so glad in that moment that God had carried her through and he was now giving me the opportunity to express his care and love through my arms and kisses. As long as she had me, she was mostly calm, though I could tell she was in a fair amount of pain. I know I have mentioned this before, but it is such a weird feeling wanting something for your baby that is both so helpful and hurtful at the same time, I was very aware of that feeling in the hours after surgery. We sent the crib away and I just held her in a hospital bed most of the day and saturday. If she wasn't already mama's girl, she is now. We bonded in such a deeper level that day, I didn't even think was possible. By Friday evening glimmers of our happy girl were beginning to show up, she was even being playful with her Grandmas.
Saturday she was doing really well and seemed to be in significantly less pain. She was trying to get her head wrap off every chance she could, so I knew she was starting to feel much better.  They discharged us at 1:00pm and we went home exhausted, it very difficult to sleep well in a hospital anyway, let alone with Molly sleeping on me. It was almost like having a newborn again, but she's totally worth it and I have no qualms about doing it again in three or so months. So we got home rested a little and then my parents brought dinner and my sis and brother in law came over with Adam. It was really nice to have everyone together. We went to bed that night with Molly with us and when we woke up that morning, poor baby looked so swollen that her right eye was almost totally shut. So I called the Dr. on call and he said ok c'mon back up to Scottish Rite. They did some tests and it ended up just being fluid and her reaction to surgery, but no infection. Of course they kept us there just in case over night. So we spent Sunday and half of Monday in the room next the one we had just been discharged from. Thankfully it was nothing and Dr. Hermann even made a special trip over to us and he felt confident that it would all work itself out in a couple days.
The following thursday, Molly was 95% back to herself, just slightly clingy. We went to see Dr. Hermann and he was extremely happy with how she healed and the swelling was completely gone.
She's doing great and you'd never know she had surgery, even the scar is minimal. It's right behind her ear and maybe two inches big. Our doc is a rock star! Now we just have one more week until they hook her up to the computer and Molly's precious ear is born and her hearing begins! Thank you so much to all of you that prayed and sent good thoughts our way, you will never know how much we felt it! I feel so blessed that so many people care enough about Molly and our family to join us on her journey. I know that I would have not been able to get through all this without your support and love. I am just amazed how God has used so many of y'all to lift us up and comfort us. I have said throughout, but God has been SO good to us in this whole journey. I am just so thankful for all the people he has put in our life and the way he has used them to be our rock in this.
So next Friday is the big day and we can't wait to share it with all of you! Though I can't post it until Sunday because we are having an activation viewing party for our family on Sunday. I promise that as soon as we can Sunday I will post it through youtube on here!

Almost there!

Just thought I'd bring everyone one up to speed. We are 8 days away from surgery! I can't believe it's so close. This week we had a CT scan to make sure everything was fine and there were no infections that could delay surgery. Molly was such a trooper and was as agreeable as a baby who hadn't gotten a nap or eaten in 6 hours could be. She was even very silly when waking up from the sedation. Today we had pre-op at Dr. Hermann's office and he said the CT looked good, so we are all set to go for next week! Molly sure takes whatever we throw at her. Today during the appointment they had to pull wax out her ear, it didn't hurt but she was not happy and I had to hold her little hands and she cried a lot. I'm so glad that there will only be a few more times we have to allow pain and discomfort to be placed on our sweet girl. I just hope that these times don't scar her. I often pray during procedures that God will not allow her to remember and that it won't effect her long term. I think because she is so young it will be ok, but that's just where this mama's mind goes sometimes. So now just a week until God restores my sweet baby to hearing through the gifted hands of our surgeon. When you pray for us, don't forget to pray for our surgeon as well, he will have our precious Molly for 2-3 hours. They tell us that Molly should be fully back to herself and mostly healed within a week, but they still wait three weeks in order to activate the implant. So while the surgery is in a week, Molly's implant won't be turned on until May 24th. This also means that more than likely it will August or September when she gets her second implant.
Also a very exciting opportunity has been presented to us. 11 Alive wants to do a story on Molly! All of Atlanta will get to hear Molly's story and we are looking forward to sharing it. My prayer is that God will be glorified in us sharing and that maybe we can help some families going through what we have. So exciting times and challenging times are ahead for us, but it just feels unreal that they day we have been waiting for almost 8 months will be here!

Progress

Lots of appointments in the last month! First, we met with the Cochlear implant surgeon and he shared that if we can get all prerequisites done, that he would implant Molly's first cochlear as early as April! I'm really working to make sure this happens, because that means my baby would hear everything in three months! Next we met with the audiology department to get Molly fitted for hearing aids. I know it seems silly, but they assured us that she would at the very least have some sound awareness. Maybe she would even hear some low frequencies in the 50ish decibel range, which is about the volume of most conversations. We then went to the ophthalmologist and payed him money to tell us that Molly's vision was perfect, hello I could have told you that! That was our December.

This week we met on Monday with the auditory verbal center, where will be enrolling Molly for speech therapy. We are really excited and think that their program will be a great fit for us. They will basically teach me to do speech work at home via homework lessons taught to me once a week and then carried out at home. Then today was a big day, Molly got her sparkly purple hearing aids, picked out by Adam. We were hopeful that she would hear even just really loud sounds. The audiologist put on the aids and Molly looked curious, but didn't cry. She barely even messed with them and was her usual happy self. Then we took her into the booth, she sat on Aaron's lap and I watched from outside with the audiologist. Then the best moment came, they played a loud sound and Molly turned her head, they repeated all the way until 55/50 decibels and she turned every time! She was not able to hear high tones, but she can hear low conversational tones! Which means some of what I say she can hear. She doesn't really understand what she's hearing because she can't hear all the tones, but she can hear! We will start speech therapy this month and help begin to detect what's coming in, but today she went from a silent world to one with sound! Putting the hearing aids in is tricky and Molly tries to get them the whole time. Getting the right fit is essential so there is no feedback. It takes me a while to get them in, but I know in time I'll be a pro. Molly hasn't really messed with them too much as long as they are in properly and not flooding her with feedback. I really hope she continues to adjust with them and not try to pull them out and teeth on them.

So next steps... Begin therapy, get a formal speech eval, meet with the hospital social worker, write a letter of intent to Kaiser, follow up with audiologist and get another list. Phew. At least we are moving forward and that much closer to complete hearing!