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.

May 8th - Pictures in the Christening Gown

I took Mikaela to get her picture taken in the BEAUTIFUL crocheted gown my grandmother made. Words cannot begin to describe the intricacy and elegance this gown has! I am thrilled that she made it for us. Santa Giuliante - YOU ROCK!

May 6th - Dr Jay for shots

This visit was just to split her vaccines. I did ask that they measure her head and put it in the file since we are to be monitoring for the hydrocephalus. She measured 17 1/4 inches. I am happy about that! Her head grew only 1/4 inch in a month. I think that is what it should be. Dr. Jay didn't comment and since this wasn't really a well visit, he was kind of in and out rather quickly. I will be much more thorough in 30 days when she has her next official well check up.

April 26-30 Our trip to Cabo

Kurt and I took a trip to Cabo San Lucas, Mexico! He earned it through his sales job and meeting his quota for 2007. I have to say that up until 3 weeks prior, we weren't sure we would be going. I knew my Pop-Pop and Mom-Mom Bensalem would be wonderful with the girls, I wasn't sure I could handle leaving!! You know, when your child is sick, you want to be the one to take care of them. And often, they only want Mommy! Luckily, Mikaela had been doing a lot better and I felt confident that she would be great for the 5 days we were away.

We has a tremendous time! ...Once we got there! It's a rather long story and not sure you really want to hear it all. (If you do, send me a comment to this post and I'll come back and add it!)

The girls had a GREAT time with Mom-Mom and Pop-Pop! Juliana asks quite often when she can go back! She loves her Pop-Pop~