Christmas came a little early

On Monday, December 22, we headed over to CHOP for our equipment orientation....And we came home activated! Don't get excited!! She still won't hear the Christmas carols this year, or the chaos of mealtime with the family. At this time, her programs are so soft, that she isn't even getting speech. Just some environmental sounds. I am guessing, the programs are slightly above what her natural unaided hearing is/was. (As you know, she no longer has any hearing in her implanted ear.)

We did capture it on video and it was extremely uneventful. Not one single response that an untrained viewer would say, "ooooh, she must have heard that!" She didn't look up to the clanging, light up toy in the box when he played the tones and beeps. She didn't look up once as the audiologist went through the ling sounds when he turned the microphone on and was speaking to her. Nothing at all. She was very engrossed in the toys and we are assuming since the 'sounds' are now electrical impulses, her brain has no idea what to do with that information coming in yet. However, I am happy to have the video as a baseline to see her progress through time.

So we start out on P1 (program one) volume set to zero. Zero doesn't mean there isn't anything happening, it's just the lowest setting. We then can bump it up as she is tolerating it. Once she gets to 9, and is comfortable with that amount of stimulation, we can move to P2 (program two) and start the cycle over again. It is expected that we will spend about two days on each program before we move to the next. We have 4 programs set on the processor, but all of them are really, really soft. This first week is just so she gets used to the equipment. We don't want to scare her or have her dislike the processor. She ultimately needs to bond to this equipment.

Well, when they tell you the challenge will be keeping it on her head, they weren't kidding! What a nightmare! I am exhausted! :-) For those of you who know Mikaela, she is such a head rocker! (Side to side, not front to back - in case you don't know her.) So the darn thing flops off all the time. Yes, yes, I know.... toupee tape. Did that, not a big help! Yes, I do have the snug fit on there as well. My, my, my.... I now have another full time job.

Yesterday, her first day of activation, was not the best because of her being so tired. We had to be ready and leave for CHOP by 7...she usually sleeps until 8 or so. Not to mention she slept like doggy-do the night before. Needless to say, she was really cranky and the new electronic stimulation in her head must have pushed her to the edge. Lots of tantrums and real tears. Today was a bit better. Only a few meltdowns in the morning. Once she woke up from the afternoon nap, she was more like the Mikaela we have all grown to love so dearly!

Our TOD came this morning and reminded me to start the processor at P1 Volume 0 every time I put it on her after sleeping. So, first thing in the a.m. and same deal after nap. It's like turning the bright light on first thing in the morning, only electronic impulses inside your head....can you imagine it? In addition, I do turn it on first, then put it on her. The processor model that we chose does have a 'ramp up' that some recipients say really bothers them. So, at this time, I am choosing to avoid it.

Even though she can't hear speech with the selection of programs we have, I have begun narrating my entire life. I have adopted the concept that today is the first day with my new ears. Every sound in the house is new.... I am attempting to listen as Mikaela is listening. However, since I have the knowledge of what the sounds are, my job is to point to my ear and say, "I heard that! Did you hear that??" Then I tell her what made that sound, pointing to it. "It was the chair, or It was the telephone, or It was the timer on the microwave, or It was the dog, Otto, etc." Like I've said before, thank God I am such a talker! It will serve Mikaela well.

We are taking the first baby steps towards the 'learning to hear' portion of Mikaela's Path. Inch by inch. All in her perfect time.

One week post-op

Thankfully, this has been a very quiet week as Mikaela has been recovering. She did get sick yesterday - kinda thought we were past the vomiting. It was only one episode and then she slept and was fine as she woke up.

She seems to be healing very nicely. One time when I washed her hair, I forgot about the site and scrubbed her scalp maybe a bit too vigorously. She cried a bit, but got over it very quickly. I wonder how that will go through time. I wonder if it will bother her as she grows or will the site be numb. I wonder if she will just 'get used to it'.

Finally, I am beginning to experience the 'excitment' some people have been asking me about. I am excited for the possibilities that may be held for Mikaela. I am excited to watch her learn. ...Learn things I took for granted with my other two children. I am excited to narrate my entire life to her. Thank Heaven I am quite the talker! ;-)

I know the CI saying is, "Keep your hopes high and expectations low" however, that is not really my nature. I am a hope for the best and expect the best kind of girl. I also know that Mikaela's path will be her path. (Hence the name of the blog.) I will not compare her to others. I will be patient with her and honor her progress as her progress.

I am excited for the New Year and her new hearing abilities. Thank you for taking this next step with me and your loving support as we begin the walk.

Mikaela with the bandage

Here are some pictures of her sporting her post-op head gear. Temporary....very temporary. I also have pictures of her once I took it off. It cracked me up the way her hair poured out the top!

Gave her a bath and washed her hair today....amazing! What a gem she is.

Implanted Yesterday 12/8/08

Whew...what a day!

I have to say, for me, it was really hard!!

This time, our arrival was scheduled for 8:45 a.m. Okay, better for us parents. Particularly, Kurt! He tends to be more of the night owl and this was waaaaayyyy better than our last scheduled arrival time of 6:15 a.m.

We arrived right on time. Of course everything went much slower this time!! We didn't get taken back to the pre-op area for 45 minutes. We then hung out there......forever!! Honestly! The OR nurse came for her at 11:55 a.m. - another two and a half hours! Holy cow! Mikaela was amazing! She is such an angel! Never fussed or anything. Just hung out on our laps, watched TV. I, however, didn't hold up as well! I was starving! I couldn't eat in the morning - my nerves! Then once we got to the hospital, I felt bad eating when Mikaela couldn't! :-) Silly, I know! I did eat a half of PB&J I had packed about 11:30 a.m. It didn't go down easy...kinda forced it. Nerves!

We went over to the surgery waiting area and began reading. Kurt is reading Deaf Again - which is a really well written book about a local man who was born hearing, lost his hearing, went through lots with his journey with hearing aids and being in the hearing world. Upon reaching late teens/early adult, he chose to live fully in Deaf culture. It's really good! I am reading The Christmas Sweater by Glenn Beck. Loving it and almost finished.

Anyhow...back to the story...We were told that the surgery would take an hour and a half. Kurt was checking the board early and often! I didn't begin to check it really until 1:30. Then at about 1:45, we got a call from the surgeon. He said surgery went very well. Mikaela did great. He was able to get full insertion of the electrodes. Immediately, as we hung up, the CI audiologist was entering the area and filled us in as well. He said he fired up the implant and got readings across all frequencies. This means that placement was good and we are ready for the next step. Activation. Our appointment is New Year's Eve!

So, now we had to wait to go back to see her in recovery. They brought us back around 2 p.m. She was not good! Very cranky from everything. Real tears. She kept reaching up to her ear. The nurse gave her a shot of morphine in her IV and that stung going in. UGH! Mama was not happy. (This is the part that was so hard for me.) She then fell asleep until 4 p.m. She was a tiny bit better when she woke up - not much. I was nervous about driving home and that she might throw up. Kurt and I were dragging our heels getting out of there. We left around 5:20 or so. Sure the height of rush hour in the city and the South Street bridge closed yesterday as well....(for 2 years). Surprisingly, we were back in the area by 6:15.

Mikaela wanted to be held once we got home. The nurse said to start her on clear liquids, so we did. Apple juice watered down. She drank a bunch! 9 ounces or so. I tried to lay her in the pac-n-play in the family room because I was not comfortable leaving her 'unattended' in her crib! What if she pulled on the bandage or had a nose bleed or something (The nurse said that could happen as things drain and what not.) Anyway...she wanted no parts of the pac-n-play! I took her up to bed and within minutes she was snoring! Thank God. For many things today...

Throughout the night we were up lots. I set my timer to give her pain medicine every 5 hours. Then I woke up every time she moved a muscle. Otto decided to sneak upstairs around 1 a.m. I sent him packing back down to the kitchen. As I drifted off to sleep again around 1:20, I hear him sneaking up again!! What is the deal? That is so not like him. At 4 a.m. we had to change EVERYTHING. Because of the IV fluid and the 9 ounces of juice water I gave her...we had quite the leak! Gotta love scrubbing down the crib mattress at 4 a.m. Needless to say, I am looking forward to getting to bed at a reasonable time tonight! By 9 at the latest, I'm certain!

Today, Mikaela woke up much more like herself! The swelling in her face came down. She wanted to reach for and play with her toys. She ate all normal meals today. Well, normal for her. I would say she's about 85-90% back to herself. Just not as much 'talking' and laughter as usual. I am hoping to see that back tomorrow or so.

After her lunch, we took off the bandage. Grandmom was here and captured it all on pictures - as did I. The incision looks incredible. They barely shaved any hair. There isn't any swelling to speak of. So, it went as well as it could. :-) I'll post them soon.

Well, I am going to sign off for tonight. I will keep you all updated as best as I can. Thank you for following Mikaela's path.

Moving right along...

On Saturday, Mikaela signed MOM!! Okay, she only did it 3 times that day and hasn't done it since, but she DID sign it!! She was in her neglect-o-sphere (aka Excersaucer) and wanted out. (I usually sign as I say to her, "Come to Mama" whenever I take her out. Same thing when I take her out of her crib, highchair, car seat, stroller, etc...) As I was walking over to her she signed 'mama'! Her hand was open, facing out, and on her chin!! She had her mouth open, which I am thinking she was imitating me....like she was speech reading!

Some other cute things she is doing: points to head, nose, teeth. She plays peekaboo. She imitates a silly song I sing when I feed her. She also imitates 'woof, woof, woof' when she sees Otto or any dog for that matter. (It's like "uh, uh, uh" - but with closed lips) Then when she sees Puca, (our cat) she imitates a meow sound. (For her, it's like "mmmmmmm" - like a whine, kind of.) I also have a bunny on her highchair and when she sees him, she imitates 'hop, hop, hop'. (It sounds just like her woof, woof, woof.) But she has the right rhythm down. Then when I pull over the butterfly on her highchair to which she imitates my 'wheeeeeeeeeee'. (Yep, you guessed it, it sounds just like her meow imitation.)

The ASL signs she knows and has used: Head, Nose, Teeth, Dog, more, milk, eat, light, mama, the letters "F", "D", "L", and "E". She knows receptively, but hasn't yet signed them herself: Cat, Daddy, Sister, Outside, Flower, Tree, Butterfly, Bird, and I am pretty sure she knows more. I think she understands some phrases I sign to her, like "Change your diaper, NO, Take a bath, go in the car, Ready to eat, Go to sleep now," and things like that.

Physically she is progressing as well. What she can do: On her tummy, she pushes her self up and locks her arms. (She can't get into crawling position yet, but she's working those legs under.) She pushes herself backwards, spins around, and she can roll from belly to back, but doesn't like to. She can also roll from back to belly as well, and - doesn't like to. She cannot get from sit to crawl or belly position and likewise cannot go from belly to sit. She is, however, making progress towards that with some assistance from me and/or her therapist. She cannot pull to stand, but does quite well if I stand her and cruises along the ottoman.

Overall, I am very happy with how she is improving!! Everyday is so exciting and I don't take anything for granted! Looking foward to noting 'hearing improvements' here as well soon! Surgery is less than a week.