April 16th - Genetics Testing

Headed back to CHOP for Genetics Testing. I wasn't planning on doing this because I am not really concerned as to the WHY of her hearing loss. Originally, I figured when she was older and if she wanted to know why we would do it then. However, it is part of the required workup for a CI. Basically they did a bunch of measurements. Everything from the spacing between her eyes to the length of the digits of her fingers and so many more. They asked a bit of family history and then a blood draw. We will hear in four to six weeks.

We did also volunteer to be part of a 'study group'. They just had to take a little extra vile of blood for that department.

April 10 - First TOD Therapy

Yvonne came today! She is Mikaela's TOD (Teacher of the Deaf) and I think she is really great. I heard wonderful things about her from the staff at CHOP as well. She talked to me about showing Mikaela how to respond to sounds in the environment. Imagine you are a baby, playing with Mom or Dad. All of a sudden the dog starts barking and running to get a toy, Mom and Dad get up and walk away. Next thing you know there is a person standing in the kitchen. What just happened? You and I know....However a deaf child -even with hearing aids- most likely never heard the doorbell ring. So it is our job to take her to the door and let her hear the knock or doorbell. Even if we have to stage it. Likewise with the phone, vacuum, coffee maker, toilet flushing, etc. These are things that a hearing child will put together on her own. A deaf child has to be shown how the circle completes. We will do this as well with outside sounds, people sounds, animals, and toys.

Next we learned to sign "I Love You" (the Barney song). We love to sing around here no matter how awful we sound! :-)

Lastly, Yvonne let me borrow the John Tracy Clinic manual for Distance Education for Parents of Young Children Who are Deaf and Hard-of-Hearing. I jumped on the website and ordered my own copy. It seems like a wonderful resource. Upon completion of each section, I will respond to an assessment/survey and they send out the next one. Most of you know I love to learn and I am anxious to get started!

April 9th - Audi appt & Surgery Post-Op

Spending the day at CHOP! Mikaela has an appointment with the audiologist at 11 a.m. Erin took new molds and also turned up the hearing aids a bit to give her a touch more power. Maybe we'll see more response as she continues to learn to listen. This time we picked out clear pink molds with pink glitter in them! Too fun!

At 2:30, Mikaela has an appointment for her malrotation surgery follow up. We got there about 2 and we weren't seen until 4:20 p.m. UGH! Luckily Juliana met a few children and played while we waited. Mikaela ate and was very good the rest of the time. As usual! I swear this child has a smile from the moment she opens her eyes to the moment she closes them at night! What a blessing she is. Anyway, I digress!..... Everything was A-OKAY regarding her recovery. The scar looks great. She is progressing quite well. Her sensitive GI stuff is still being chalked up to her acid reflux. I hope it all passes very soon!

April 1 - IFSP Meeting

Not too much to report here. Just reiterating all that was discussed at the evaluation and restating the recommendations. Kurt and I were to come to this meeting with our goals for Mikaela. At this time, I just want her to be "on track" for her age physically. I want the family to learn ASL because I believe it is important for us all to know Mikaela's language. That is who she is. She is a beautiful, happy girl who has unlimited potential to become whatever she desires and she also happens to be deaf. We will benefit from knowing how to communicate with ASL. Should her hearing aids be in the shop for repair, we will benefit from knowing ASL. If she receives the implant and we are swimming at the beach, we will all benefit from knowing ASL. There will be many other occasions that we will benefit from knowing ASL. Regarding her listening, I am committed to having her hearing aids on during all waking hours. A normal hearing child hears something like one million words by the time he is one. For a normal hearing child 90 percent of learning is incidental - meaning he picks it up by listening and watching what is going on. For a child with a hearing loss, that number drops dramatically depending on the severity of the loss. For Mikaela, we don't know what sound is getting in. We know that there is sound, but we aren't sure how muffled or distorted it is. It is still my intention to give her every opportunity to process what ever she can.

From here, her TOD and PT will begin within 45 days - as stated by law.

March 31 - 4 mo. Well Visit

Well, I just want to go to the doctor and leave with him saying, "Everything looks right on track. See you next month." NO! Mikaela's head grew a full inch in the past two months and 'normal' growth is 1/2 inch in two months. So this means we have to "monitor" her for Hydrocephalus. i.e. water on the brain. There is a range of severity one may have this condition. Some have it and never even know it. They just have big heads. Some have it worse. If she has this condition and if she has it severely, the plan is to do surgery and put in a shunt to drain the excess fluid from the brain.

My nerves!! I am a bit beside myself.

Dr. Jay said we'll just wait and measure again next month. Yeah, right! Don't you think for one minute that I won't be taking out my tape measure EVERY SINGLE MONDAY!!

This baby girl continues to remain on every prayer chain going! Thank you all for your continued support and prayers!

March 30 - Baptism

What a fabulous day! Mikaela was baptized! Mom-Mom and Pop-Pop came up from Florida. I can't tell you how special it is to be surrounded by family and good friends on these special occasions. Mass was at 11:30. Father John didn't pronounce one baby's name correctly! It was a riot. Mikaela was baptized as Mikalayla! :-) It's okay - God knows her name!

We came back to the house for some hoagies, pasta salad, cole slaw, olives, pickles, cake, coffee, cookies etc. We opted for a bit more casual affair this time around. Too difficult to warm food when we are all at church!

It was a beautiful day and thank you to each of you for your love and support!

March 28 - Info Mtg

Today we went over to CHOP for a Cochlear Implant informational meeting. The CI audiologist explained to us and showed us the actual devices from Advanced Bionics and Cochlear Corp. He explained the processor and how it "grows with children". He briefly discussed the surgery. He explained how this is not a cure - just a different type of aid. All in all, there wasn't really any new information here for me. I have been researching and also learned most of what he shared at the parent panel.