Thursday, June 28, 2007

Rhyan took her Program up to 4, Level 15. That is very encouraging. She was still not responding to my voice and seemed increasingly frustrated as the day wore on. I know she's tired, which might be attributing to her outbursts. I can't wait until I can write that we have reached our goal. I know we will.


Yesterday remained difficult and this morning is not proving to be much better. I've realized just now that I haven't concentrated my prayers on her understanding. I haven't been able to get into an in-depth quiet time at all. I miss Him so much. I'm sure that's a big part of my frustration. So, with that, I will make sure I find the time to focus my prayers and talk with my Father.

She did end on Program 4, Level 7 last night. That was exciting. This morning we haven't adjusted it at all, so that's where she started. We remain grateful and expectant.


Tuesday, June 26, 2007

We spent the day at Sea World, hoping that the amazement and wonder of all of Rhy Rhy's favorite creatures would somehow open her up a little bit. During the dolphin show, I watched her eyes light up, but that's all we got all day. I don't remember her saying one word.

I've noticed that I treat her like she doesn't have her ear on at all. I continue to sign and mouth my words instead of speaking. I constantly have to remind myself to fold my hands and use my voice. She still isn't responding to my voice like she did Saturday night, however she was up to Program 4, Level 0 before bed. That was exciting, because she has been pretty defiant about the increases.

I continue to wait for this all to just 'click'. I know it will, but it remains frustrating and heart-breaking. I am so grateful for God's perfect timing in all this. We were so upset about the insurance fiasco and how long everything took, but if we would have tried to do this during the school year, it would have been disastrous. It really couldn't have been better timing. I'm so happy that He's the One making the decisions.


Monday, June 25, 2007

This morning started out less challenging, but Rhyan lost her drive to improve as the day wore on. We started her out at Program 3, Level 0 and by the end of the day, she had only increased to Program 3, Level 4. That is where we ended last night.

I am grateful that she mainly seems content and happy without the ability to understand what is being said. She seems happier to go into the child watch at the gym and is content to watch television without understanding what the characters are saying. But it is so frustrating to me as her mommy that she doesn't hear my voice. She responded last night at the same level and for whatever reason, didn't respond tonight. I want my sweet, funny, silly girl back.

I'm keeping the goal in sight. I realize that the end result will make this all worth it. But I just really miss my baby.

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Sunday, June 24, 2007

It is day 3 and we are continuing on. This morning was very challenging, but we ended the day on a fun and happy note.
When Rhyan woke up this morning, she refused to put on her new ear unless the volume was down to zero. We have four programs which progressively get 'louder'. Within the programs there are 20 levels, going to level 12 is what is recommended. This morning we started out on Program 2, Level 0. She still wasn't responding to my voice and at church, she was relying on reading lips.
Right now, nearing bedtime, she is on Program 3, Level 4 and we are so thrilled. Just a few minutes ago, she responded to my voice for the first time with her new ear. I don't know how to explain my feelings about that. I grabbed her and held her tight, and simply relaxed into the precious, precious glimmers of hope. Once again, at the close of the day, we are so very grateful. And once again, I praise my Jesus.

Saturday, June 23, 2007

Today was Rhyan's second day with her new ear. We let her wear her old ear this morning. We celebrated her 6th birthday and we just couldn't force her to be without sound on her special day. We told her that after her party we would have to put her old ear away for a few weeks. She took it off on her own and she hasn't asked for it back.

She is continuing to turn up the sound pretty quickly and is very excited when she realizes that she's hearing better. She has said several times, 'I heard you and you sound like you.' or 'I sound like myself.' Her excitement is so contagious.

She still has a lot of difficulty hearing things. I can say her name repeatedly while standing right next to her and she won't respond. But if she is focused on what we're doing, as with her flash cards, she is getting about half of the words correct.

Jesus continues to give me glimmers of light on this path. When I start feeling sad that she doesn't know my voice, she'll start singing and smile at the sound of her own. Our first official day of this new leg of our journey was, all in all, pretty good. She isn't hearing us very well, but she is happy. And I'm so very grateful.

I'm pretty sure I'm too tired to make much sense, but basically, today was quite the mixed bag of emotions. We were told that this wasn't going to be easy. We were prepared for 'not easy'. However, we were in no way prepared for the kicking, screaming, and flailing that accompanied 'not easy'. The fear and confusion were too much for Rhyan this morning and things progressively went from really bad to a whole lot worse.

There was no way we were going to be able to force Rhyan to wear her new ear while it was turned on, so we left the office with her ear on her head, but turned off. Our way of giving in without giving in. Oh, to be the parent of a strong-willed child. On the way home, she fell asleep and all I could think of was that I thought the hard part was over with the surgery. This was, in a way, so much worse. I guess because I know that the difficulty could last for a couple weeks. I cried and prayed and got some prayer reinforcements and by the time we arrived to Sanford, Rhyan had her new ear in her hand and was willing to put it on as long as we didn't make any noise. I cried again and listened to her sing her ABC's for the first time with a whole new sound. She seemed amazed by what she was hearing and started taking normal sounds and listening to them all over again for the first time. Paper rustling, fingers snapping, silly songs. We were in the middle of watching a miracle unfold.

Once we were home, we could see her relax and she took off. She was running up to toys and familiar things with familiar sounds and, once again, hearing them all for the first time. We could see it in her eyes that she was beginning to understand. We are not done with 'not easy'. She was excited to turn up the volume on her new processor by 5 segments, but she still can't understand anything we're saying. The analogy we were given is it's like someone putting ear phones on us and forcing us to listen to a foreign language. It's confusing and frustrating and I wish I could put myself in her place for even a little bit to feel this with her.

We said our prayers tonight in sign language and simply said 'Thank You, Jesus.' Through it all, that's where we come full circle. This is one of the hardest things we've ever been through and Thank You, Jesus, with all our hearts.

As always, we felt your prayers today, and we love you.

Courtney & Matt

Tuesday, June 12, 2007

Well! It's been two weeks now since surgery. Almost immediately, we traded the red bandage from the hospital for surgical bandages because the red bandage came off every two hours during the night. I was already exhausted from lack of sleep the night of surgery and I desperately needed a good nights rest. The surgical bandages stayed on all night and were really a blessing.

However, sometime last week Rhyan started giving us difficulty when going to bed. Matt and I were brainstorming when he brought up that maybe she was afraid that the bandages were a permanent part of life and it was really frustrating her. The next day I told her that she only had 5 days left of bandages and that she'd also be able to wash her hair in 5 days. She was so excited and our count down began.

Yesterday (a day early) we washed her hair and she was in heaven. All day long she talked about how she was going to have clean hair and she repeatedly demonstrated how we could wash it without getting her incision wet. So, bath time was pretty fun last night!

Things seem to be pretty much back to normal for right now (as normal as they can be during the summer, anyway!) We are now looking forward to Friday, June 22nd, when her new ear will be 'turned on'. Then normalcy will cease once again for about a month. She will have to learn to hear from her left ear without aid from the right, and we are praying that things will go easier than what we've been told.

Either way, we will continue on toward our goal for the end of July. My baby will have two ears. I still can hardly believe it.

Two days after surgery - A much happier picture :)

Monday, June 04, 2007

>From the mouth of Rhyan:

Midnight after surgery "I cannot be up this late or I'll be SNOTTY!"
Noon the following day "Those nurses kept waking me up and now I'm nasty."

Boy, that girl knows herself! I would love to say that she's the graceful little patient, but it just isn't so. Other than the giant-sized attitude and some pain, things couldn't have gone better.

It seemed that she knew what was going on beforehand. She quietly watched TV and didn't want to play. I don't think she said more than a few words until it was time to be wheeled away into surgery. We gave her hugs and she didn't even look back. Just like her first surgery, peace was with us all throughout. She went in around 3:00 and we were updated at about 4:00 that things were progressing well. About 40 minutes later, Dr. Orobello came in and said everything went perfectly. We hadn't spoken to Dr. Orobello since her first surgery, so I was able to tell him a little bit about her progress in school and tried to express that he was used in the most significant way to change the course of her life. But, how do you tell someone that in just a few minutes.

Right before Dr. Orobello came in, we prayed that there wouldn't be any staples and that Matt would be able to stay the night in the room with us. Last time one of the most difficult things was having the staples removed (13 in all, we think). And staying alone with Rhyan in the hospital room was so very lonely. When Dr. Orobello told us that he was able to use derma-bond and there was nothing needing to be removed, I knew that prayers can be answered almost instantaneously. Sometimes I feel like if I don't pray about something for days or weeks, the prayer won't be answered. That most definitely turned out to be wrong! Not only will she not have to go through the fear and pain of having staples removed, we don't have to go for our follow up appointment until her implant is turned on, meaning that we were just saved 5 hours in the car and a full day off from work for Matt. He continues to answers our prayers beyond our expectations.

We were able to go back to recovery with her and it came back to me so vividly how it felt to see her with her first implant time. Shocking. This time was definitely better. She wasn't so tiny or so swollen, but it still took my breath away. She had been dry heaving coming out of the anesthesia, so we were kept in recovery for quite a while. Once she was taken to her room, I was overjoyed to find that we had a private room. Matt was going to be able to stay.

Throughout the night was a typical stay in the hospital. Awakened every couple hours for stats and meds. She was able to sleep through a couple interruptions and she was given only two rounds of morphine before being switched to Tylenol with codeine. With her last surgery, I believe I only slept for either 1/2 hour or one hour. Either way, it was so difficult. This time we were able to sleep once for a two hour stretch and once for a three hour stretch. It was more than I expected.
On our way home, she slept nearly the entire way. Even as I'm writing this I have to continue to remind myself that the hard part is over. It's only good stuff from now on. She awoke at midnight last night completely lucid after her negative reaction yesterday to the Tylenol with codeine and she didn't need pain medication until this morning. We gave her Tylenol without codeine this time. We can't figure out why codeine would have affected her last night but not after surgery and we don't have an explanation other than we had the generic version. Codeine will not be used again, though, no matter the answer. Right at this moment I'm listening to Rhyan and Evynn playing with their dolls together and my heart is full.
The novel of Rhyan's life will be one of faith, love, hope, adventure, trials overcome and the Truth told. May 29th was the beginning of the next beautiful chapter in her life. Thank you so much for being a part of penning that most blessed page.
In His love,Courtney