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.

EP Clinic Results and New Surgery Date

Well, yesterday was interesting to say the least. The Dr. came in and asked, "Why am I seeing your daughter?" I was a bit taken back. I suppose because of all the scampering and rushing around to have this arrhythmia looked into, her file wasn't the most complete it could be. So after a brief exam, he said Mikaela was perfectly normal. Her adjusted QT was normal, as was every other reading in her EKG. Subsequently, he heard NO murmer whatsoever. Nor clicking for that matter. hmmm. All that was recommended was that we come back in 6 months for a repeat EKG. Sure. I'm happy to do that. (Appointment is scheduled for May 5th.)

I am curious how two people could look at the same EKG, listen to the same heart and have two varrying outcomes.

Anyway. My NEW pediatrician feels that because of all the precautionary steps they took, (an echo cardiogram, referring Mikaela to the EP Clinic) and since the Specialist cleared her for surgery, she feels confident that all is well. She, like Kurt, believe that they were just being extra cautious due to the hearing loss. I understand that and always a proponent of 'better safe than sorry'. Maybe I was looking for a better explanation of why one week ago there were red lights, sirens, and a mad rush to Cardiology. Last week no cardiologist would sign off on her EKG. One week later, with the same EKG, all is fine. I suppose the normal results from the echo cardiogram is what maybe made the difference this week.

The new surgery date is December 8th.

Appointment Update

I received a call about 3:00 p.m. this afternoon. I have an appointment in the EP Clinic at 1:30 p.m. Monday!!! YIPEE!

Ironically enough, I had just drafted an email to Dr. F. asking for intervention on our behalf. (The thought of waiting until March had me totally freaked out!) I was actually proofreading it and ready to press send when my cell phone rang. Kurt was working using the house line. Luckily my cell phone was in the files. In addition, I happened to have it nearby because I rarely answer it!

We'll keep you posted on what we learn! Have a wonderful weekend with your families.

CI Surgery Day 11/17/08....um....not so much....

As you know, we were scheduled for Mikaela's CI implantation surgery yesterday. Our arrival time was 6:15 a.m. Oye! Kurt is definitely not a morning person and I am...but not THAT early! We managed to arrive at 6:30 to the check in desk. Not too bad...

We got called back to the prep area and the nurses took the vitals. The anesthesiologist (Dr. H.) walked by with a big Dunkin Donuts cup of coffee. Good! Let's have everyone awake and on their best! About 7:30, Dr. H. came in and said he wanted to repeat the EKG. That took about 7 minutes to have them come back, hook her up and take it. During that time, the surgeon came in, marked Mikaela's right ear with an "X", explained about post op expectations and stepped out. Then the anesthesiologist came back in at a moment that Kurt happened to step out to the men's room. He asked where Kurt was and then said he'd be back to talk to us when Kurt was back. I said, "Why? Is the surgery off?" He replied yes. When I asked why, he said...."I'll tell you when Kurt gets back." He then went off to the nurse's station to let them know the situation and to begin prepping the next patient.

By this time, Kurt returns and I say, "The surgery is off." First he said, "Are you serious?" To which I responded I was. He then was like, "What?? Why?" I said I didn't know and that the anesthesiologist would be back to tell us why when you return from the men's room. He was desperately searching my face for some kind of smile, thinking there must be a punchline in here somewhere....nope. I was serious.

The anesthesiologist returned. He regretted to inform us that he didn't like the EKG that was taken 1/31/08. He explained to us about a QTc reading. This occurs during the repolarization of the heart. He described it as such: The heart constricts to beat, then relaxes, then it resets itself electronically to zero to accept the next electrical impulse to cause the next beat. Mikaela's heart was taking a bit too long to reset to zero. The repeat EKG from surgery day 11/17/08 was better, but because of the first one, he wanted her to be seen by a cardiologist. I told him that Mikaela had surgery on 1/31 when the first EKG was taken. He was shocked. He said, "She had surgery with this EKG?? I explained that yes, it was a life-threatening situation and they had to operate to save her. He then noted that emergency and elective surgeries have different parameters. There was some conversation of regret that we were not notified earlier....(um....how about like maybe back in January/February when we were in the hospital for 3 or 4 days!!! - Could have been good!!) He referred us to a cardiologist that agreed to see us that day since they felt bad for the lack of earlier notification.

Our appointment was scheduled for 9 a.m. Of course it took this doctor about an hour to see us and Mikaela had luckily fallen asleep. (We'll call the Cardiologist Dr. F. because it is getting too confusing and takes too long to type when I refer to them by degree) He took background information from us since Mikaela had an empty Cardio file. Then he listened to her heart, looked at the two EKGs and shared with us his thoughts: He said he heard a "very, very slight murmur" and "some intermittent clicking." The clicking may or may not be a valve. It may be that due to her age and the walls around the heart not being as developed as they are in older children and adults, he may just be hearing more than typical. Dr. F. wanted to have a complete work up on Mikaela and managed to finagle the schedule for an immediate echo cardiogram.

We were in that office by 11 a.m. Mikaela did really well, considering it was a 40 minute test and she hadn't eaten since 7 p.m. the night before! Once the technician took the portion of the study from the lower part of the heart, she let us feed her while she took more pictures. That helped a bit, but we had to take a few burp breaks!

Back to wait for Dr. F. to give us the preliminary results. He said, there is a syndrome that is called Long QT Syndrome that can present with deaf individuals and Dr. F just wants to rule that out. He said that today's EKG was much more 'normal' but there was one measurement that was "borderline normal" and he wants to have a complete study done before he would okay a surgical procedure. Dr. F. said if a normal hearing child had the same EKG it probably wouldn't have raised a flag. But due to the hearing loss, he wants to be certain. I can appreciate that. To obtain confirmation, Dr. F. then gave us the name of another doctor who specializes in arrhythmia in children and noted on the paperwork to schedule a visit 'ASAP to the EP Clinic." Of course I had no idea what EP stood for and Kurt and I were making up all kinds of things! :-) Like....'Early Prevention' and 'Enlarged P***s'.... It actually means Electrophysiology.

At the desk as we were leaving, the clerk tried to schedule an appointment for us, but they were too full. I called when I got home and the secretary at the EP Clinic wanted to get the scoop on Mikaela's file, talk to the two docs and get back to me. She didn't get back to me by 4:30 p.m. so I tried again. They were already gone for the day. So guess who called at 8:04 a.m. this morning....yours truly!

The secretary was really nice. But at this time, the doctor to which we were referred (Dr. S.) doesn't have an availability until March. The partner (Dr. V.) may be able to reschedule something and get us in there in December. The secretary will check with them and get back to us. Sure....I suppose I'll check back in on Friday to see if we can at least pencil something in!!

I am wondering if I should find another pediatric EP specialist and see if I can get something done sooner. CHOP can send over Mikaela's chart...they can do their thing....send results back over to CHOP. Or...will this just muddy the waters? I can be a little patient, but not for long. Kurt thinks we need to just 'let the system work'. I am not feeling so confident in the system at this time considering Mikaela's EKG sat in her file since January 31. Maybe the system needs some oversight by ME!

Sidebar: I am transferring to a new Pediatrician today. I figure surgery isn't going to take place before the records get over to the new Ped. I'll update the insurance company and there shouldn't be any problems. (Like that positive intention, there???)

Hearing with a CI

I just read this post from a mom on one of the list serves to which I belong. It is very interesting and it may help us understand what Mikaela will and will not hear with the CI. Some of you have asked me how will her hearing be different than natural hearing. This does a good job of creating a visual picture what I understand hearing to be with the CI.

This is a quote from Dr. Patricia Spencer:

I'll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you've not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it. Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal.

Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that hearing aid. With a cochlear implant, though, you can see pieces of that animal's head, pieces of its neck, its legs, its body, pieces of its tailend, but you still are missing pieces in between each of those that you see. The reason I'm bringing this up for you to think about is because it'simportant for us to realize that children who are using cochlear implants still don't see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world. They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That's the kind of task that a child is facing using a cochlear implant. -Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University

The sounds Mikaela will hear are not as rich and full as normal hearing. I often describe it to be like a transister radio from 'back in the day'. I do understand that the brain can learn to fill in what the CI doesn't deliver and I am hopeful that as technology increases over the years that it will improve for her. I am very interested to hear what you think of this. Please feel free to comment.

2 hour CI Info meeting

Today we had our two hour informational meeting about expections with getting a CI. Not so much about equipment or surgery, but more about parental support, learning to listen, setting our expections of performance after activation, advocating for her needs once Mikaela reaches school age, and the like. It was really good to know that CHOP has such an extensive support network in place for their hearing loss kiddos.

Because of the fact that I work part time from home, I have more time than others may to research all this stuff. Most of what was shared I already knew, but it is good to hear it again. The content that I do not yet know is what the law says about her rights and entitlements in the school setting. I am aware of which services Mikaela is eligible to receive from 0-3 through Early Intervention. Since I have a few other things to work through with her presently, I am just enjoying the moment now. I don't plan to concern myself with those details just yet. She just turned ONE...for Pete's sake!! CHOP made it clear that they have classes and information on this topic that we can attend/receive as time goes by.

We did go over quite a bit of things to do at home for habilitation. That part was kind of fun and actually got me more excited about this whole process. There were video clips of some CI kids in their therapy sessions and it was very emotional for me to see the progress they were making.

We spent a bit of time dicussing Deaf culture, ASL, NTID, Gallaudet and how the CI fits in today. Then we speculated a bit about how the CI may play a role there in the years to come. This part was valuable to me as you know, this is where my struggle lies. Our presentor had her views based on 41 years in the field. She was strong in her conviction. Some of the things she said made perfect sense and other things were said of which I did not agree.

I also want to share that yesterday, I did go to another pediatrician for a second opinion on Mikaela's GI and developement issues. I loved her!! We will be switching in December - after surgery. No need to switch now and cause any snafus with billing or whatever!! Plus the girls are due for part two of the flu shot at the end of the month. We'll finish that where we are and start new next month. I look forward to keeping you all updated with that!

Well, this has been on heck of a week. I am spent. I have some preparation to do for a call I have in the morning. Good night to all of you and 'talk' to you soon!

Surgery Date

November 17, 2008

Happy Birthday!

Sorry it has been so long since I've posted! Like for all of you, our life has been really, really busy. On Sunday, Mikaela turned one! We had a family party on Saturday and I've attached some pictures. The party was so wonderful and I want to give a special "thank you" to those of you who were able to come and "we missed you" to those who could not make it. She knows she is loved by so many!

On her actual birthday, she woke up sick again. I heard her coughing and coughing through the monitor. I went into her room and her pajamas were a bit wet on the front. There was also a small amount on her sheet. However, she was really listless! She was blinking very slowly and her limbs were just limp. I changed her clothes and took her downstairs. She gagged a few times and nothing came up. About 40 minutes later, she did throw up a small amount. I decided to try to start her on Pedialyte rather than formula as it might be easier on her tummy. During the next 45 minutes, I slowly fed her an ounce. Routinely I wait to make sure it stays down. Well, it didn't. It all came back up. I waited for a time after that and tried another ounce. This time only a bit of it came back up. The next interval, she wouldn't let me pull the bottle away. She was so hungry! She finished two ounces and then two more. I waited about an hour and then gave her an 8 ounce bottle. It all stayed down fine. I even gave her an ounce of cereal before nap and that stayed down well. Then all was good. The rest of the day....ate as usual.

What is the deal with all this puking, though??? I cannot figure it out. One thought that occurred to me is on Saturday, because of the party, she didn't eat her normal amount or on her normal schedule. Maybe with her acid reflux and an empty stomach, could it be that the extra acid caused her to get sick??? Any thoughts? Maybe from those of you who have acid reflux?

By the way, today she is a ball of fire! Back to her best! Cheerfully screaming and playing with all her toys. ...Laughing when we do our usual peek-a-boo. ....Alert curiosity with all around her. Praise God!

A short recap for the month of October:

On the 5th she was so sick. She threw up all day. She couldn't keep any fluid down. She didn't wake up much and was very limp and listless. So much so I was worried about dehydration. Her grandparents came down from Bensalem and and we were heading out the door to CHOP when she started to keep down the fluids. We actually had the van packed and it was running in the driveway. She started to become alert and act more like herself so we decided not to go and wait and see. As the night went on, she really showed signs of getting back to normal. I took her into Dr. Jay on Tuesday 10/7 just for a look. Of course at the time, she was fine, just had a fever. A low fever....which brings me to the next point. She has had a low fever since September 27th. (that was the first day I noticed.)

Sidebar: I decided to keep a temperature journal to track it. It is still there...to this day...mostly hoovering around 100 degrees. 99.3 - 101.5 and Dr. Jay on 10/21 when we went for flu shots felt that a fever with no other symptoms is nothing to be concerned about. She does not have any other symptoms...no cough, not cranky, eating fine, sleeping well...all that good stuff! He thinks that maybe Juliana is bringing home little viruses from school and Mikaela is building her immune system. I am still not comfortable and want to seek another opinion. In fact planning on calling another Pediatrician today for a consult. Last night she finally showed that she was 98.9 and I am hoping that it is on its way out!

So, to move to the hearing journey....we have an appointment November 4th with the surgeon to obtain Mikaela's medical clearance and confirm our surgery date. My concern with this perpetual fever is that the surgery will be postponed. We hope that by next week, she will be all better and her temperature will be normal! Please take a moment and pray for our intention. Thank you in advance for that. We are planning to hit the polls and vote on our way to the appointment. Hopefully the lines will move quickly and we will be able to do that. Once we have confirmation of the surgery date, I will post it.

I know many of you have Mikaela on prayer chains and are anxious for the date. Thank you for your support and love as she (and our family) travels this path. I am trusting of the surgeon and the procedure itself. I have some other hesitancies that are very difficult to articulate. I will try. My hope is that this choice to implant suits her and is what she would choose for herself. My hope is that she will appreciate the option we are providing her now and later in life. For those of you who follow the blog that have children with hearing loss may understand me and what I am trying to express. For those of us who are hearing, may not quite follow it. That's okay. One thing that helps me is that ultimately she holds the choice to continue living in the hearing world or if she wants to she can choose to take it off and be part of the Deaf community---if that fits her better. The choice for now...is ours. But the choice will always be hers.

11 Months and We Have Our First Tooth

Mikaela turned 11 months yesterday and tonight as she was laughing up a storm after her bath, I thought....let's see about her teeth. Lo and behold!! The bottom right has finally cut through the gum! The left one is a 1/2 step behind and will cut through soon! Join me in congratulating Mikaela on a milestone!

Still thinking over the CI choice. Leaning towards Cochlear brand, but holding off on the final decision until we talk to the surgeon. I know they cannot officially recommend one brand over another, but I am sure by answering our questions, we may learn more and close the deal - so to speak.

I also plan to talk to parents that chose each brand and ask what led them to their decision. I realize each company is outstanding and I cannot make a 'wrong' choice! That is a relief in and of itself.

Well, I'm really tired tonight. Too much politics and the candidates are exhausting me! Have a wonderful 'rest of your weekend'. ...And hug and kiss your kiddos! They grow way too fast.

My baby is audiologically a CI candidate

Well, after our third visit to the audiologist, for the hearing portion of meeting CI credentials, it is confirmed that Mikaela - audiologically - is a cochlear implant candidate. (I think she is in all the other criteria as well but have to receive confirmation from the CI team.) As you may recall, the last time she was too tired to respond consistently and the time prior to that, she had a fever and wasn't responding consistently. The hearing aids just don't give her access to speech. This news is bittersweet for me. Those of you who know me know I am struggling with the decision to implant or not. I was really hoping against hope that the hearing aids would miraculously give her enough benefit.

Only because I am a hearing individual with no experience in the Deaf community, do I want her to hear. In my view, having access to speech will give my daughter more opportunities than if she didn't have access to speech. Because I only know one Deaf man (whom I actually met just once) and his hearing wife and beautiful daughter can I say I have any exposure at all to anyone who is deaf. They are a great family and willing to help me and Mikaela in any way we need with our questions and connections about the Deaf community and Deaf culture. I am very interested in learning. I want to get involved and stay involved for Mikaela's benefit. Again, I am learning ASL and teaching Juliana. Mikaela's receptive sign language is showing growth. I am working on being more consistent with all I know to make sure Mikaela is shown early and often! Yet, I am not signing everything I say (because I don't know how and I haven't made it a habit yet) so Mikaela is left out of a lot of family conversations. Even if I did sign what I am saying, it wouldn't be true ASL because I'd be signing in English word order. I am working on making a concerted effort to deepen my knowledge and demonstrate more for her.

In favor of a CI: It is my belief that it will be 'easier' for her in everyday life if she can hear. Let's take the example I have noted before. Let's play.... Let's say Mikaela doesn't get an implant. In my little story, she is a minor and she requires an interpreter (me) where ever we go. Stores, play dates, even ChuckECheese for Pete's sake! We may be at a playground and how will she interact with a little friend? ....Let's say we are with family, everything will have to be interpreted by me for our hearing relatives. Sure, they may learn some phrases, but will they really be able to learn the language enough to sign as they speak so Mikaela can be part of every conversation? Let's say she wants to go play with her cousins, they definitely don't know ASL and how will they play? I mean fully play. Let's say she's older, a teen perhaps...she's annoyed with me or even her sister and really wants to confide in a cousin...how can she? Maybe she's having boy trouble or friend trouble, who can she confide in? Sure, she will have great friends in the Deaf community from her school, and other Deaf connections....but she will not be as bonded with her own family. I believe blood is thicker than water by far. I have had friends whom I believed we would be close as sisters forever, simply walk out of my life without looking back. Family won't do that. My daughter deserves to be as connected and bonded with her family as she possibly can be. I read a blog from one deaf individual who is now in his later years. He originally was opposed to CIs in children. After reading the account of his life, he sees the benefits now and is in favor of them. The chord that struck me most as he recounted the years, was that he was sent to a residential school for the deaf, and while he was away, his family learned ASL a bit, but never really well. When he came home, he said he felt like the family dog. Watching everything, but included in very little. I never want Mikaela to feel that way.

Now, my hesitations on the CI....IT'S SURGERY AND NOT MEDICALLY NECESSARY! Yes, it is medically necessary if she wants to HEAR. But it is not a life threatening situation. Would she have a wonderful life without hearing - yes! Although I don't know from personal experience, I know that many Deaf people are thrilled with their life just as it is. God sent me a perfect baby. I don't want to do anything to interfere with her perfection. There is more emotional turmoil going on, but I just can't seem to voice it. Not concisely or clearly.

Anyhow. I am moving forward with YES, we want the surgery. Kurt and I will make a list of questions for the doctor. ...and maybe some for my friend involved in the Deaf community.

Someone Different

Below is taken from Dr. Dan Gottlieb's website and it shares incredible insight that I wanted to capture here. Of course deafness is considered the 'invisible disability', so Mikaela may not encounter some of the stares...but she may experience some of the feelings. It made me examine myself. Hope it moves you too. (Oh, by the way, if you don't know who Dan Gottieb is, check out the rest of his website.)

http://www.drdangottlieb.com/col_04_08.htm

Posted on Mon, April 28, 2008
Encountering someone different
By Dan Gottlieb

What is your first instinct when you see someone who is disfigured,deformed or just plain different? To look away? To react by rote? Many years ago, waiting to meet a colleague, I was sitting in the lobby of Hahnemann Hospital, my briefcase on my lap, drinking a cup of coffee - when a woman in an obvious hurry walked by and put a dollar in my cup! She clearly didn't see a man in a wheelchair. She sawsomeone who was "different," and responded quickly. I tell this story frequently because it teaches us so much about ourselves. Our brains are hardwired to react instantly to members of our species who don't look or behave the way they "should." When we encounter someone with a disfigured body or acting in ways that don't fit the expected norm, we feel distress. It happens so fast that we don't even know what we're feeling. Our first instinct, however, is to find a way to diminish our distress. That's why, when I go into a restaurant, the hostess will often ask my companion, "Where would he like to sit?" The hostess makes eye contact with my companion in order to lessen the stress of facing someone who is "different." Sometimes our reaction to the distress takes the form of anger or harsh judgment. Parents of children on the autism spectrum tell me that when their child becomes agitated in a public place, they frequently get critical looks or even patronizing comments. The reason: Affixing blame can help diminish distress caused by the unusual behavior of others. It makes the world feel more orderly. There is a price, however, and not only for the person who is judged or ignored. Stress is a symptom; diminishing it by judging, criticizing or ignoring others is merely a form of symptom relief, like having a stiff drink.

So what can we do? Since stress is hardwired, allow yourself to simply experience the stressful feelings without trying to avoid them. Make eye contact if you can. (This gets easier with practice, as anyone who works with disabled people can tell you.) I have always believed that if you look in someone's eyes, you can find their humanity - and in that process, you can learn more about your own. If that woman in Hahnemann's lobby had been able to look into my eyes, she would have seen a fellow human, a quadriplegic whoin fact has a great deal in common with her.

And one other thing about those of us who look or act different. My grandson Sam, who is on the autism spectrum, is almost 8 years old. He is generally doing well in first grade but still struggles in some areas. Recently he had some classwork that he didn't understand. Embarrassed about his difficulty, he took his book home without asking his teacher. When he spoke to his mother, not only was he embarrassed about not understanding the homework, he also felt guilty about taking the book home. In order to assuage Sam's guilt, his mom explained: "Sam, they have a special piece of paper at school that says when you have trouble with your work, you can ask the teacher and she will give you extra help. And if you still have trouble, she will call me and I will help also. "But Sam didn't feel better. He began to cry: "Mommy, I don't want a special piece of paper."

Sam speaks for most everyone who is "different." None of us really wants that special piece of paper.

Mommy Voice

Mikaela has really been doing well with her GI stuff! She is picky towards new tastes, but gratefully she has been keeping things down very well. (The past three weeks anyway!) Even tonight, she spit up a bit with a burp, but overall, I am very happy.

The past few days, since she signed her first sign, my mommy voice has been telling me something. It seems to me that she really isn't getting much speech with her hearing aids. Yes, she hears sound when we talk, but it seems to me that her word discrimination would be very poor - if you could test it at this time. :-) I think she hears vowels, but I am doubtful that she hears many consonants. I realize that I have no formal training in this area and I could be entirely wrong, but it is just my mommy voice.

The only sounds she makes is "aaaah" and the nasal sound "ng". We have been saying 'b' to her and of course ma ma and da da since the day she got her hearing aids. She has never once even accidentally babbled these sounds. I think one time she was making the 'ng' sound and she opened her mouth to teethe on something and it sounded like 'ma'. I know I am supposed to "take it" and celebrate it, but I am pretty certain it was a fluke.

So for her sake, I am really going to ramp up my ASL. I told Juliana tonight that we have to sign everything we say, so Mikaela can be part of the conversation. This will really shed a light on how much I need to learn! But hey...it's a second language for crying out loud. No one learns it over night. Too bad Rosetta Stone doesn't have a program! I'd buy it! :-)

First Sign????????

Okay, I'm a little slow! I am pretty sure Mikaela's first sign is 'light'. She looks at the light and puts her arm over her head and spreads her fingers with her palm facing her! It is soooooo cute! She has been doing it for quite some time and I am finally putting it together!

So we are sitting at the kitchen table (well, she in her highchair) and I kept asking her, "where's the light?" (Signing and speaking, since her aids were in). She would consistently look at the light in the kitchen and do the sign then look to the light in the family room and do the sign! So precious! I wish you all could be here to see her!

I am so happy! I suppose receptive is finally moving towards expressive!

(10 months, two weeks and one day)

To You, My Sisters

This has been circulating on many of the different list servs to which I belong and I want to capture it here. If you don't know "Welcome to Holland" or "The Special Mother", let me know and I will post it here or email it to you privately if you want.


To You, My Sisters
by Maureen K. Higgins

Many of you I have never even met face to face, butI've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.

Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversityof our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as"special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know"the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology. We have taken on our insurance companies and schoolboards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland " and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and ablazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touch downs and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

10 month hearing test results

On Wednesday, Aug. 27, we headed back over to Philly for another hearing test. This time we were also checking Mikaela's hearing with aids in, but each ear separately instead of together. This was an attempt to definitively identify her as a canditate for a CI. Or not.

Well, yet again, the results were inconclusive. Of course she was too tired to consistently respond. I will be making an appointment to repeat the hearing test in Voorhees. Since it is so much closer, we should be able to time it better around her more alert waking hours.

It is really frustrating. If she were profoundly deaf and the hearing aids didn't bring her into the speech banana at all, we wouldn't have to go through this repetitive testing. I just want to be certain of where her residual hearing is before I give the okay to potentially destroy it.

Again, this whole CI thing FOR ME is a really difficult decision. It is becoming less so as we get closer to her first birthday. It is becoming more obvious that she likes having her hearing aids in. She like what sound she does receive from them. Subsequently, she is pulling at them less too! She only yanks them out when she is tired now. So, for me, that is a sign that she prefers to be part of the hearing world. And at this time, the best hearing aids we have available is the cochlear implant.

I am still emphatic about learning ASL. I want to give Mikaela all the tools in her bag to succeed as she grows. As all parents feel, I want her path to be one of least resistance. As a deaf child, I feel she should be able to take advantage of total communication. Of course once she receives the CI, we will focus relentlessly on audio/verbal therapy, but I believe that we can sign too. One tip I remember from some of the list serves to which I belong, said to have certain times of the day where we turn our voices off and only sign. This will allow us all to get better at ASL, while also having part of the day where we are focused on speaking and listening.

If any of you know of a great source for learning ASL, feel free to share. :-)

Gotta run! Today is my Pop-Pop's 86 birthday celebration and I have to get everybody ready. Have a great day and hug your kids an extra time or two today.

A day in the life...

As promised, I wanted to share with you my day yesterday....

Of course Monday night we went to be too late due to the Olympic addiction, so when the alarm went off, I was a little groggy getting started. Juliana had her horseback riding lesson at 8:45 so we have to leave by 8:15. Kids fed, dressed and pulling out of the driveway by 8:17....ooooh, look at me go! I even remembered a drink for Juliana!

As we pulled into the farm I realized I didn't bring my check book. How was I to pay for the services rendered??? Yikes! I went through my wallet, through the bottom of the purse looking for change and managed to come up with the fee, less twenty-five cents! Not bad!

So we are unloading and I noticed that Juliana's apple juice spilled all over the floor of the van...I had stuck it in the diaper bag to carry it out and promptly forgot to put it in the cup holder for the drive. Now the carpet is in need of a Resolve treatment and the diaper bag and all of it's contents are pretty soaked. Okay...no big deal. It can be fixed.

Her lesson went well. Lisa, her instructor, said she has never seen a child post so well after only three lessons. My girl is a natural! Look out, Daddy!

We get home around 10 and I only have to go back out at 11 for the pony camp I signed her up for this week in Cherry Hill. I decided to leave most of the stuff in the car. I took in the soggy portion of the diaper bag as well as the bag itself and started a load of laundry. The remaining contents are in one of those environmentally friendly green shopping bags which I always have spilling all over my van. My purse, in the car. I even decide to leave the keys in the car. I'm only coming in to do a quick client coaching call, let Mikaela nap for a bit, pack her lunch and roll back out.

At about five minutes before 11:00, I go out to put her lunch in the car and start the air. It didn't make the usual dinging sound. It was a really strange clicking sound. Oh, no! I attempt to start it, nuthin! Battery dead. Yep! I left the lights on. No way! It was only an hour. Sounds like time for a new battery! Ugh! Well pony club is a no go for 'this day' as Juliana would say. At least I hadn't woken Mikaela yet!

I call AAA expecting it to be an hour or more. I pulled out the chocolate chip cookie dough I had made the night before and decided to bake them. I preheated the oven and attempted to drop them out onto my baking stones. Too hard still. I suppose I have to let them sit for a while. I turned off the oven.

Surprisingly, AAA came in only 13 minutes! WOW! I guess they have kept up with the high service response demand of today's instant gratification society! Who knew? I haven't had to use them in years.

My car was running and the nice gentleman said to let it run for about a half hour or so to recharge the battery. He also recommended getting it tested. Yah....I'm on it!

I decided to let Mikaela finish her nap. Hopefully this would help her get over the cold. My grandparents are coming on Thursday to stay with us for the weekend and I want us all to be at or near our best.

I kept checking the consistency of the dough and when it seemed scoopable, I turned the oven back on. I didn't hear that familiar click and hiss of the gas range. I didn't hear anything. The temperature stayed fixed at 112 degrees. (I guess it had retained a couple degrees from the earlier heating, because it usually starts at 100.) Then nuthin! Oh, great! The oven is broken!

I called Johnnies Appliances who had fixed our dryer a few months back and set up a service call. The nice lady said they could come Wednesday, Thursday or Friday. Uh, Wednesday, please! I have my grandparents coming, I need an oven!!! I don't know what we are cooking yet, but I need an oven! I asked her if she had any cancellations/openings left that afternoon, please remember me.

I called my mom to fill her in on the excitement of the day...as we were talking, Johnnies Appliances called in! She said there was a guy in my neighborhood finishing up a call and he could come over! YAY!!! He came in about 20 minutes and about 20 minutes after that, I had a working oven, to the tune of $162.50. How much is a new oven???? I hope this repair buys me another 8 years.

Kurt came home about 3:30 and I filled him in on the day and he said I wasn't allowed to touch anything else because I cost him too much already. I quickly reminded him that I saved him money. Had we needed a new oven, it would have cost him a kitchen remodel!!

Checking in

Hi! Things are going very well. Mikaela is continuing to eat cereal and now up to two tablespoons plus 6 tablespoons formula three times a day. She is drinking about 6-8 ounces of formula as well after the cereal. That is three good meals a day and she feels like she is putting on some weight. In fact, my left hip, knee and ankle have a floating mysterious pain. I am assuming it is because I carry her on my left side! :-)

We had an evil cold/fever illness run through the house since last Saturday (8/9). Juliana and I are about 99% better, but Mikaela and Daddy are still working through it. Each morning, I have to do that lovely nasal ball suction thing on Mikaela. Needless to say I am confident that the sensory shut down is over. She is not shy about letting me know how much she dislikes that procedure! I run the vaporizor in her room at night. Hoping that is helping.

Olympic fever also has hit our home. We DVR every night and watch it the next day. Gymnastics, track, diving, swimming, it is all so exciting!! I thought I missed the entire Equestrian competition because it doesn't air on prime time. (Finally found it on the Oxygen network.) I only caught it since Monday night. It was quite exciting that USA and Canada had to have a jump off for the gold in the team finals! The last event airs Thursday 10 a.m. - 1 p.m. and this is on NBC! You know I already have the DVR set!

Yesterday was quite the interesting day! When I get back from pony camp, I'll share!

Food Going Down Well!!

Mikaela has been eating rice cereal with her Alimentum formula since Thursday last week! Three times a day - one tablespoon of cereal and 3 tablespoons of formula. She is keeping it down! I am thrilled. She loves it! Which is quite a change from before. When I tried it in the past, she gagged and threw it up as I was feeding it to her. Now she twirls her wrists and kicks her legs when she sees me bring it to her high chair! Too funny!

I'll keep this simple for a week and then I'll introduce some stage one foods. Let's pray she keeps it down. As a mom, I just want it to be easy for her. Let's face it, we are a bunch of foodies in this family and Mikaela should be able to enjoy it all as well!

CI Meeting

I just want to do a quick post before I leave for the weekend for the Benson Family Reunion. We went to CHOP on Tuesday for the CI team evaluation. At this time, we don't know for certain if Mikaela is eligible for a CI. One of her Audiograms gave borderline results. Meaning that she may have 'too much hearing' for a CI. Good news if she gains enough benefit from the hearing aids. I believe all your prayers are paying off! Anyway, we will have some more specific tests at the end of the month with each ear isolated rather than performing together.

We also had her 9 month well visit today. She lost a lot of weight (10 ounces) at a time when she is supposed to be gaining 1/2 to one ounce per day. Back to trying this 'food' thing! Please say prayers that she tolerates it better now. She has to put this weight back on and then some. At this time, she is in the 18 percentile for weight....not too good!

I'll post more next week!

Pilot Cap

Many of you are waiting for the picture of Mikaela in her pilot cap....sorry for the delay! Too cute!

Cochlear Implant technology is 30 years old

On one of the yahoo groups this morning, a woman posted an article about CI's being 30 years old. It also featured a 10 month old in Australia who received simultaneous bilateral implants. He had them activated last month. Here is the link if you want to see a picture of what it will look like should Mikaela receive them.

http://www.theage.com.au/national/another-miracle-in-implants-30-years-20080731-3nzz.html

Of course, at this time, CHOP will only do unilateral. Should we decide to get a second one, we would have to find another surgical facility. (I would research John Hopkins) As many of you know, I have been on the fence about this. Lately, should the doctors tell us that Mikaela is a good candidate, I have been leaning towards getting her implanted. I have always said that if we do one, I want two. God gives us two ears for a reason. Localization of sound, hearing in noisy environments, clear speech discrimination and I am sure there are more valid reasons to hear from both ears.

I still have more research to do. Since this technology is only 30 years old and more importantly only been used in infants for maybe about 10 years, there aren't many studies about potential long-term effects. Initially, the youngest they would implant was 2 years old. Then the FDA lowered it to 18 months and currently, here in the USA, the FDA has approved implatation at 12 months.

As many of you know, implanting will most likely sacrifice any natural hearing that Mikaela has. So when her processors are off at night, swimming, bathing or any time she has them off, she won't hear anything. Right now she could possibly hear loud noises. (As you noticed on her official hearing test results.) I also read that when you yell and are within 4 feet of someone, that your voice is about 75 dB. She is hearing at 55 or 60 dB at the low frequency. So she would hear a warning scream. Now, she doesn't have speech discrimination with her aids off and just using her natural hearing because she can't hear certain sounds. Meaning that she would probably not know what you yelled, but she would have heard the yell. Not so after surgery.

Recently I was talking to a friend and she was shocked to learn of this. I think a lot of people think the implants are 'always on' and don't realize there is an external part that comes off. So yes, Mikaela will always be deaf. That is why I am feeling so strongly about learning ASL. That is part of who she is. I want our family to be connected with the Deaf community even if she receives a device that allows her to hear. She should have others around her that can relate to what she may be experiencing through various stages of her life.

It is my understanding that with the implants, she will typically hear in the "mild hearing loss" range. That means if you are in the kitchen talking to her and someone is pulling out the chair, you will probably have to repeat yourself. She will have to got to AV (Audio/Verbal) aka listening/speech therapy for quite a while.

In addition, she will have the bed shaker for the smoke detector and her morning alarm. I am not sure of what other assistive devices she will need as she grows, but I am sure we will learn. There are FM systems that help with hearing the teacher in school as well as the TV. And there are special connectors to assist with the phone, Ipod and the like, should she need them.

A cochlear implant is not a cure. It is just the best "hearing aid" they have available at this time.

Her new "Do"

Lately, Mikaela will not leave the hearing aids alone. Unless I am sitting with her and occupying her with toys and redirecting her hand, she is pulling at them constantly. Even more so when she is tired. Let's say she is in the 'neglect-o-sphere' (1), aka exersaucer, and I run in the kitchen to stir the sauce, all I hear is that lovely high-pitched squealing feedback. Then I run back in the family room, pop it back in her ear and the whole thing repeats every 45 seconds or so.

She also found her barrettes. They don't last either. The challenge with them is no lovely high-pitched squealing feedback to let you know that it has been removed and making it's way into her mouth - as all things do with a 9 month old. So after about 3 days and 6 heart attacks when I cannot locate the barrette for several minutes, I tried the small, clear, ouchless rubber bands. No success there either!

I have too many other things to have heart attacks over, so Mikaela has a new do! No longer are barrettes required to keep her hair out of her eyes. I hope you all like it!

Oh....I also have found a remedy for the hearing aid issue....a pilot cap! I will post that picture after nap time!

Footnotes:

(1) The term "neglect-o-sphere" was shared with me by our friend Meredith P.

Upper GI Results

So we get to CHOP on time, but of course I couldn't remember where we were supposed to go. I went to the Wood Center and we were supposed to be in the Main hospital. Anyway, all was well and we were still on time by the time we made it to the right department.

Juliana couldn't be in the room of course because of the radiation exposure, so she and Daddy waited in the hall.

Mikaela hated the whole ordeal! Who likes it? She cried as soon as the technician pulled her arms over her head let alone when he began feeding her the barium. They snapped a bunch of pictures, rolled her this way and that. Snapped a bunch more. Asked me to hold her for a while to calm her down and see if the barium would start to work its way down. Then back to the table again for more pictures. This time she cried as soon as I laid her down. More turning and rolling. Right side, back to her back, then left, then right again. More pictures.

They asked me to hold her again while they gave a quick call to her surgeon that did her Ladd procedure. In about two minutes, they were back in the room for a few more pictures.

All in all, everything looks "good". Her stomach was a bit distended and had some air. The barium flowed a bit slower than the radiologist would have liked, but attributed all of the above to her being so upset that she swallowed some air and the flow slows down because when one is upset the stomach clamps down a bit.

So we know only that nothing serious is wrong. We know that the intestines look okay. Everything is behaving "typically". (Thanks, Kim for this word). We don't really know why she is unable to eat baby food yet and periodically vomits all that she eats. It's a waiting game.

As long as her weight gain is good and growth is good, we ride it out!

Vacation was a blast

The week was really very nice! The weather was perfect, the kids had fun, Kurt made lots of sand sculptures - all in all a success.

Except for one little thing...Mikeala threw up again Tuesday night! That's it! I am scheduling a GI work up. I don't understand! This is not 'normal'.

Called CHOP on Wednesday and we have an appointment Monday, July 21st.

More GI Stuff

7/12/08 We rented a house again this year in Ocean City NJ - on the beach! It should be GREAT! Juliana loves playing in the sand, playing "chase" with the waves and going to the boardwalk. Last year was so much fun - even with me being pregnant. This year will obviously be a bit different since Mikaela is so young and napping twice a day. I forsee a lot of time in the house and not so much on the beach for me.

So our plan was to get out of our house by 1 or 2 since Mikaela usually naps from 2-4 and would hopefully sleep in the car on the way down. Didn't happen! We were still packing up at 2, so I put her to bed in her swing so Daddy could take apart the crib to pack it. (For those of you who don't know, she sleeps on an incline due to the acid reflux.) I tried having her sleep flat the week before to see if I could just bring the Pack and Play, but no....the reflux got worse. We decided to bring her crib! We were ready to leave by 5 and I woke Mikaela from her nap. Kurt made a suggestion about heading down first and I would stay back to feed Mikaela. He would have his car unloaded and the crib set up by the time I would arrive. Sounded like a plan! He took off.

Juliana, Mikaela and I were sitting on the couch as I started to feed her. At first, she didn't want to eat. Hmmm....maybe she wasn't fully awake yet. I waited a bit. She burped. Ah, that explains it - or so I thought. Now she wanted the bottle. As I was giving her the first 2 ounces, I thought maybe I would stop at 4. That would be enough to hold her until we got to the shore. I would then feed her the rest there. At two ounces, got the burp... all is well. Gave her the next 2 ounces....no burp! We worked on it for 20 minutes and still nothing. Well, I could always pull over if she got fussy. Let's just go!

She's in the carseat, we are outside, Juliana is getting in her seat and as I was lifting Mikaela into the van she started vomitting! NO! Not AGAIN! Back into the house. She and the carseat were covered! Oh, man! I really wish Kurt was here to help! I needed a towel. The carseat has to be taken apart and washed. I couldn't do anything but just held her over the kitchen sink. These episodes usually take 45 minutes until she brings everything up. Then she usually sleeps for a while. Then when she wakes up I usually give Pedialyte to rehydrate her. Ugh...who could I call for help? Jill next door....no answer. Andrea...ugh! She's at Conference! Lonna...I know she lives a bit away, but maybe....no answer! My other neighbor Anni....ringing, ringing....Mark answered. Anni was still at work, but would be home in 15 minutes. Sure, just what she wanted to do after work, help me with puke! I said, "if she feels like it, can she come help? If she didn't I completely understand!" No one left to call.

So I took of the puke soaked onsie, wrapped her it two kitchen towels and just waited over the sink for the next wave to come. Yep! Lots more came. Not to be too descriptive here, but it had a lot of mucus in it. No bile though. My nerves!

The doorbell rings. It was Mark and his mom!! They were here to help. What great people! He took the carseat completely apart and scrubbed it out. His mom was so caring and nice - wanting to do anything she could. Mikeala threw up two more times and then fell asleep. I laid her inclined on the boppy Nicole loaned me so she could be somewhat inclined. Remember, the crib is on the way to the shore! She slept for about 20 mintues. When she awoke, she burped and I could tell she was quite hungry. I opted to give her a bath. Normally I would be giving her the Pedialyte, but it was on the way to the shore with the crib! I guess we would have to try the formula.

Go slowly!!! It was 8:30 when I started to feed her. I was very nervous! She took 2 ounces and burped....a couple of times actually! Yay! Two more ounces and a few more burps! Woo, hoo! Who would have thought someone could get so excited over dry burps! It is a reason to celebrate in our house! However, I decided that was enough to eat for now. We could always eat more later.

We finally left at 9:45 or so. Unbelievable! Juliana was such a trouper through it all! On the way down, Mikeala was not very happy. We pulled over at the Farley rest stop and I took her out for another burp. Yep! Got it after about 5 minutes standing in a well lit, heavily occupied area of the parking lot!

We arrived close to 11 p.m. and I felt like a dishrag! What a start to the vacation!

Official Hearing Test Results

Okay...this is gonna be tricky to explain this in writing. Much easier to do it in person. Bear with me.

I tried to upload her audiogram but it is a .pdf file and it is saying I can't do that through Blogspot. I have to do more research. I am certain there must be a way....but don't know at this time.

So, to do this with out visual aid will be event more challenging.

With her hearing aids, Mikaela responds to sound in the 35-40 decibel loss at 500 Hz. Then at 1000 she is at 40-45 decibel loss. It drops off steeply at 2000 Hz to 75-80 decibel loss. The audiogram doesn't show any response at the higher freqencies i.e. 4000 or 8000.

To attempt to share which sounds in the English language she may be hearing based on this test, they are as follows:

j, m, d, b, l, a, n, o, ng, r, e, i, u

The sounds she most likely is not hearing:

p, h, g, k, ch, sh, f, s, th

For example, her name, Mikaela, to her probably sounds like Mi-ay-la. No legible 'k'. Thus why deaf people miss sounds and parts of words when they speak. They don't hear them. How can you repeat what you didn't hear? (This is not taking into account years of torturous speech therapy.)

Digestive Situation Update

Most of you know that Friday, June 27th, Mikaela threw up again in the morning. Our insurance company (United Health Care) has a 24 hour nurse line. I called it months ago and ever since, we have been in contact quite regularly with "our nurse". Her name is Christine. On Monday, June 30th, she just happened to call to check in with us. I explained about the vomiting and my theories on her slow developing GI system. She immediately asked me how she was doing with sitting unassisted. I said actually, the week of June 16th she was sitting for only 3-5 seconds without support. However this week, she was up to like three minutes!! (I am thrilled, by the way, for the progress in her core strength!!!) Christine said that core strength i.e. sitting unassisted and the digestive track mature at the same time. So, an indicator that a baby is ready to begin cereal or stage one jar food is that she can sit up by herself for a spell. Well, who knew???? I mean I know that it says stuff about keeping baby in an upright position to make swallowing easier, but I never knew about the parallel development.

I have also learned through Mikaela's hearing loss that the ears and the kidneys develop simultaneously. Just sharing for giggles!

So, because she is really sitting up well, I am hopeful that in August, I can start foods again!

Genetics....

Just hung up the phone with Genetics at CHOP. It seems that someone in the chain has dropped the ball. We had the testing done way back in April. We were told we would have the results in 4-6 weeks. No one called us. Not sure if I was supposed to call them...anywho....Not all of the results are in. The woman I spoke with said that some of the tests are absent...not sure if they weren't done or if the results just weren't posted to her file. I'm thinking someone went to lunch and forgot where they left off!! :-)

For the tests which we do have results....Pendred Syndrome, Negative. Thyroid test, normal. So at this time, the results are pointing away from Pendred. The gene mutation test results that they have in, are all showing negative....meaning all normal. So Connexin 26 and Connexin 30 are normal. That means that Kurt and I are not carriers of the mutated genes that are often attributed to hearing loss. Subsequently, Mikaela has that EVA (Enlarged Vestibular Aquaduct) in her right ear, and the gene that is attributed to that also came up negative.

They are also looking into the possibility of the malrotation being linked in some genetic relationship...not sure how, but once the rest of the tests are in, CHOP said they would explain that to me.

I should have the rest of the information in a week or so because of some people being out on vacation. Once we have all of the results, we will know if she is a case of Non-Sydromic Unexplained Hearing Loss.

Yesterday's events

It was 5:30 a.m. and through the monitor I heard Mikaela whimpering in her sleep. I went in, put the bink in her mouth and she seemed to settle. When she woke up at 6:30, she seemed a bit fussy. And for those of you who know this girl, she is never fussy. I thought maybe she was extra hungry. I fed her and she was guzzling it a bit more than usual. She gave me two burps and we had about 2 ounces left and she started throwing up. UGH! I thought these days were over. I have been lulled into a false sense of security since she hasn't thrown up since March!

It is so heartbreaking! It comes out her nose, she can't catch her breath, she cries. It is just terrible. She threw up all six ounces she had eaten. She lost the color in her face and lips - like at 5 weeks. I rinsed off her arms and legs in the sink and wrapped her in a big beach towel and just held her. She fell asleep pretty quickly after that. She slept for about an hour and a half and woke up happy, with color in her lips and back to her old self. I gave her Pedialyte for the next feeding. Then slowly gave her formula later as the day progressed.

Didn't bother to take her to the doctors. The three times I took her in March, they had nothing to offer except changes to formula. Even though they didn't think it was an allergic reaction. I agree. I don't believe it is allergies either. I do have a theory for what is going on. I think her bowels are still not mature enough to handle anything other than this Alimentum stuff. To be honest, I had given Mikaela a tiny amount of sweet potatoes three times this week. I am talking like a two teaspoons at most each time. On Tuesday, she didn't have any, but Wednesday, she got sick. Maybe since she had surgery at 3 months old, maybe those first three months, her bowels weren't maturing like other infants do. Maybe her bowels are only the equivalent to four months old. And at four months, most moms don't give sweet potatoes. Oh...you might be thinking why didn't I give her cereal...I did...last month....she threw that up too! But that she threw up as I was feeding it to her. Not days afterwards - like her body couldn't process it. She threw up the cereal because she didn't like it! :-)

Now...to change the subject....

I want to share this link with all of you. I have emailed it out before, but I want it to be here on the blog for as long as the website has it up. This is the Deaf Performing Artist Network performing John Mayer's song Waiting on the World to Change and I absolutely LOVE this! Please take the three minutes and watch it through. Let me know your thoughts on it.

http://www.d-pan.com/index.php?option=com_content&task=view&id=35&Itemid=35

I still plan to blog about the cochlear implant. Soon.....just not today.

Probably more than you want to know!

Okay...this morning I was reading some emails from one of the yahoo groups I'm on and a mom posted a link to a page that really describes well where the sounds fall in an audiogram. Take a look if you are interested:

http://tinyurl.com/2bm2vn

Also, please feel free to post any comments you have on the blog itself. I am interested to know what you think/feel thus far. Thanks!

Some Questions

Several of you have asked about the last post and booth results. Many of you don't know what all that means. I will try to help here....

First, let's talk about the speech banana. This is the range at which language is spoken. Each sound has it's own frequency. The lower frequencies are sounds like long vowels... 'a', 'e', 'oo'. The highest frequencies are sounds like 'sh' and 's'. So, if Mikaela can't hear the higher frequencies - even with her hearing aids - the word "sign" might sound like "ign" to her. Or even worse. She may not even have access to the 'n' sound.

Here is something I "borrowed" from a website that gives a great example: (http://www.teachnet.ie/mhickey/classification.html

" The primary energy of vowels occurs more in the lower frequency range while the primary energy of consonants is in the higher frequency range. The vowels give power to the sound. The consonants are relatively weaker sounds but give intelligibility to speech (earinfo, 1996).

There is great difficulty in trying to cope with language without the important information-carrying consonants (Fraser, 1996).

Here are the opening lines of two familiar nursery rhymes. In the first all the vowels have been omitted and in the second, all the consonants have been omitted.

Tw-nkl- Tw-nkl- L-ttl- St-r
H-w - W-nd-r wh-r- y-- -r-

-a-- a-- -i-- -e-- u-
a -i-- -o -e--- a -ai- o- -a-e-

The sense in the first is relatively unimpaired, with the consonants giving the clues that are necessary. The second is difficult if not impossible, unless you are given the additional clue that it involves a boy and a girl going up a hill. This example illustrates the difficulties encountered by the child with a moderate, severe or profound hearing loss in a classroom situation. "

If you google speech banana diagram, the first small picture that shows up is the hand out I have been given. The website is (http://www.apsea.ca/images/banana.jpg). I can't quite get it big enough on my monitor to clearly show exactly at which frequencies the consonants fall....maybe you can.

Regardless, if you can imagine plotting a line beginning at 25 decibel loss and as you move across the page drop it 20 to 30 decibels at each frequency, you would drop out of the speech banana by 1000 or 2000 decibels. That's kinda how Mikaela's aided hearing results look.

I hope this gives a bit more clarification to what I posted about with regards to the booth results.
In my next post, I want to chat a bit more about my hesitation to getting the implant. I have to run as Nicole is pulling up in the driveway and I am watching her son Ean for a bit.

First time in the booth

This morning, at 8 a.m. mind you, Mikaela had her first exposure to the sound booth! We first had a tympanogram performed. This tests the functioning of the eardrum. Making sure they are moving as they should - no fluid or whatever hindering the movement. All good.

Then to the booth we went. This test consisted of putting a tube with a padded tip into her ear - much like a foamy earplug. Then the audiologist would play tones at various decibels and pitches to see if she would look up to the toy doggie that would light up and move. They were mounted up in the corners of the booth- right and left respectively corresponding to the ear to which the tone was played. First, Kathy would play the tone and move the toy at about the same time so Mikaela could get the hang of what was "supposed" to happen. Then she would play the tone and wait for Mikaela to look towards the dog and then she would "reward" Mikaela with making the toy light and move.

The results are actually much closer in both ears than I previously thought. The left ear has and average of about 5 decibels less loss across most frequencies than the right. Both ears drop off dramatically as the pitch increases. In the lowest pitches (about 500 Hz) she actually has a moderate loss but both ears do drop off all the way to profound at the highest pitches. I think like 110 or 115 decibel loss at 4000 Hz.

The next test measured the ear canal itself. Here is the example Kathy gave me as to why the shape of the ear canal makes a difference to the way the hearing aids perform. If you can imagine blowing into various shaped glass bottles with different length and width necks. If you blew with the same force and amount, the sounds would have different pitches in each bottle. That is the same with our ear canals. If the same sound travels in, but the ear canal is very short and wide, it may sound different than the same sound into a long narrow ear canal. The hearing aids were adjusted to make sure Mikaela's shape is taken into account.

After an adjustment to the feedback as well, we went back in the booth with the hearing aids in to see what Mikaela might be hearing when she is aided. Again, the hearing is better at the lower frequencies. I don't remember exactly, but in the lower pitches, she has maybe a 25 decibel loss. As the pitch goes up, the hearing drops off. I think the last reading she got was 75 decibel loss. I can't remember at which pitch she obtained this reading. Regardless, she definitely is out of the "speech banana" at those higher pitches. Once I get the actual report, I will share.

To sum up....what does this all mean??? Good question! :-) It means - depending on what we want for Mikaela - there are still many options open to her. If we kept her in hearing aids, she definitely would miss sounds/speech at the higher frequencies. This doesn't mean there aren't children out there with a similar loss making it work. If we choose to work towards this, she could still have a mainstream education with the help of an interpreter in her classes. This route would also mean a lot of one -on-one instruction to make sure she isn't missing too much. Remember, the "normal hearing child" misses as much as 30% of what is said in the classroom. This appeals to me because I am not a fan of surgery unless it's a life saving decision.

Or we stay on the Cochlear Implant track which is not a perfect guarantee, but if all goes well, after extensive therapy, she would be at a mild hearing loss and wouldn't need the interpreter and still be mainstream. With this technology, there is a potential to hear a lot more of the world. I'm sure you know what the research states...if you don't and want to know more, please do not hesitate to call me or email me. I love talking about this and find not too many people are interested in learning about it. I suppose they don't have the need like I do.

Such a difficult decision for me. Many of you may think it's easy. And it might be for you. I find it SO NOT easy! :-)

Ear mould H&LL!!

I've about had it! On May 13, Mikaela had earmold impressions taken. They usually come in no longer than one week. On the 20th they didn't arrive. I gave it one more day....Nothin! So I called over to CHOP Voorhees only to find out the company that makes the moulds claim they never received the impressions.

Back over to get them redone on the 22nd. So today is one week again and yet, again, NOTHIN! Of course, our mail doesn't come until 3:50 today!! Immediately, I called over to our audiologist in Voorhees and they were all in a meeting. I left a message hoping - beyond hope - that she would check it before leaving and call me with the status of the molds. Didn't hear back. I assume the meeting ran until end of business and I am S.O.L

Tomorrow we have an appointment to have a test in the sound proof booth. I was hoping for good fitting moulds, I was poppin in new hearing aid batteries and looking forward to seeing how Mikaela responded. Well that is all shot to you know where! Her moulds were squealing two weeks ago! I can just imagine what it's going to sound like by the time we finally get these darn things!

Well, I am still planning on going tomorrow to see what we can see. At the very least, if they "lost" them again, we can have new impressions done.

I HAVE CAUGHT UP!

It is official! I have caught up on all the posts! Yes, it is true...some could use a bit more detail. Maybe Daddy will add some of his thoughts. I feel amazingly fulfilled that this is current!! It has been one of those things that you lie in bed at night thinking, "When am I going to blog???" Now I can share things as they occur.

For example....last night, Juliana was playing with two of her horses at the kitchen table. She happened to have a cup of juice there and a little bit spilled. I wiped it up and talked with her about how she knows that we don't play at the kitchen table if there is food or drinks there. We move them first or play at a spot where there isn't any food or drink. She said okay and that she remembered that rule. A few minutes later, I was sitting on the couch feeding Mikaela and from the kitchen table Juliana said, "Mom, when you get older, you forget things.....I am getting older....I forgot that rule."

I about peed my pants! She said that's what Poppy said...he is getting older and he forgets things. WOW....if four is the age at which we begin to forget, we are in a world of trouble!!

Big Strides

Yet again, I will go back and fill in the gaps - someday...I Promise!!

However, I must share! Big strides in Mikaela's physical development during the past week and a half. Last Monday, May 5th, we began physical therapy. We worked mainly on tummy time. Yemi, the therapist, did some passive range of motion on her limbs as well as some rolling over. She told me not to work with her on rolling over as she still has limit on her range of motion in her shoulder area. Just stick to tummy time. Okay...will do!

I found it a bit difficult to fit in the practice due to her eating schedule and wondered would she be comfortable on her belly so soon after eating?? If I waited, she got too tired and then was grouchy! What to do?

Well, what little we did proved to be enough! On Monday, May 12th, Yemi noticed a big improvement in her shoulders! Before she arrived, I noticed Mikaela, while laying on her back, grabbed her feet! This is the first time she has done that! She is also reaching for toys held at mid-point (or mid-line) in front of her and her shoulders are coming forward - not so stiff and held behind her. Subsequently, during therapy time, we worked a lot on rolling over! She did five times to the right then five times to the left. Maybe more... Then we worked on pulling up for head control. This week, I am to continue to work on tummy time and fit in rolling over and sitting with assistance. Put her on her tummy when ever and as much as she will tolerate!

MIKAELA ROLLED OVER FOR THE FIRST TIME TODAY FROM BACK TO TUMMY! She rolled to her left two times! I was so thrilled for her! What a quick learner!

Well, I gotta run. I am taking dinner to a Mom in our MOMS group who just had a baby. Oh...by the way...when we were on vacation in Mexico, I wrote a lot in Mikaela's journal to catch up on some of those blank posts....I just have to make the time to type it in for you all! Thank you for your patience and support!

May 12th Tabernacle Play Group

I am really excited about this! Through Mikaela's TOD, I learned of a playgroup that a mom in the area started to keep in touch with various other children or families that she has met all of which have a child with a hearing loss. They were holding a social at a church in Tabernacle and I went with Juliana and Mikeala. Kurt was planning to attend, but he was stuck on 76 in traffic. No surprise there!

Anyhow, I met some great people and the group is planning to meet once a month. We are thinking of ideas of events to do. Next month we are having a picnic at a local park. The kids will run and play while we chat.

I am looking forward to hearing about other's journeys and learn from them. One family, in particular, lives right here in Marlton. Actually within walking distance! I am planning to walk with the mom and hoping to learn a ton from her! She is an ASL interpreter. Her husband is 4th generation deaf and their daughter is 5th generation deaf. I am excited about this two fold...it is long overdue that I get back into exercising and obviously, she is a wealth of knowledge in a world I am now a part of on behalf of my precious daughter.