Christmas Morning 2010

Christmas......Before

Christmas........After

Christmas Card for next year????

The stockings were hung by the chimney with care.........

Christmas 2010

"It's beginning to look a lot like Christmas".

Fall Fun 2010

Trick or Treat!

Did anyone else notice?

While Allison was flipping through the Toy-R-Us Big Book( pointing and saying...."I want that for Christmas") she noticed one boy wearing a hearing aid and another boy wearing a cochlear implant. She said, "Mom, look that boy has a hearing aid like Jared and that one is wearing a CI". There was also a boy or girl( I don't remember which) that had Down Syndrome. It is so great that our kids are seeing children just like them in magazines and advertisements.

Kudos to Toys R Us!!

IEP Meetings

It's that time of year again, the annual IEP meeting. Last Wed, we had Jared and Allison's. Let me just say that I love the team that is working with our kids. Everyone is so great and really cares about what it is going to take to make sure that Jared and Allison are reaching their full potential.
Here are some of the highlights from the meeting.

Jared- His teacher reports that he is creative and has very good ideas. He is well liked by his peers and interacts with friends throughout the day.( yep, he is very social) He is a pleasure to have in school.( now what parent would not want to hear that?) Jared is currently reading at an Independent Developmental Reading Assessment Level 24, which is the end of second grade, so he is reading at grade level, seeing how he just started 3rd grade. On the Stanford Achievement Test, Jared scored a 571 in the area of reading vocabulary, this means that he scored the same or better than 75-80% of his hearing impaired peers. In the area of reading comprehension, he scored a 598, which means that he scored the same or better than 85-90% of his hearing impaired peers. We are pretty pleased with this. We are looking forward to getting Jared's new hearing aids, we are excited to see how they improve Jared's ability to focus and staying on task. He is struggling with hearing his peers in the classroom, so he tends to let his mind drift off when he should be paying attention.

Allison-Her teacher reports that she is a great reader. She is becoming more fluent when reading and also doing better at keeping up with her work. Allison is reading at an Independent Developmental Reading Assessment level 28, this is above grade level. Second grade students are expected to be reading at a DRA level 20 by the end of the 1st grading period.( you go, girl!!) Allison can also read 193/200 k-2 grade sight words. All I have to say about this is......pretty good for a deaf girl. ;-) and once again, THANK YOU COCHLEAR IMPLANTS!!!! There are no goals on her IEP for reading because she is doing so well.
Allison is going to be spending time working on her spelling and writing skills this year.

Happy Birthday Allison and Jordan

So, I am a little behind on this post, but this weekend we celebrated Jordan's 3rd birthday( Sept 12th) and Allison's 8th birthday(Sept18th).

We had a wonderful time with the family. Allison's theme was butterflies and Jordan's was Thomas. It is so hard trying to find a theme to fit a boy and a girl, so they each get their own.

Happy Birthday, Allison and Jordan!! You both are special gifts from God.

Enjoy the video of Allison and her very special birthday gift.......I just love her reaction. Once again it is these moments that make us realize what a wonderful gift CI's are, when she can express in words her excitement over a birthday gift.

3rd and Final

Yesterday, Allison had what we hope will be her final surgery. This time it was her right ear. Once again the doctor cleaned out the cholesteotoma and removed her ear drum( which was paper thin and not really doing her any good, due to her hearing loss).
She was in surgery about 2 1/2 hours, not nearly as long as the surgery on her left ear( 3 1/3 hours). Her doctor said she did great. After about 1 hour in recovery we were able to see her. Allison was in some pain, but was given some pain medicine and was able to get up and go to the bathroom. We were able to leave around 12:45 and home by 1:30.
Allison is very cranky, a sure sign that she is not feeling the best, she is usually a really happy girl.
She is happy that everything is done and is now looking forward to our mini vacation in Oct.

A picture is worth a thousand words.

Sometimes we need a little reminder that what we did for Allison was all worth it. Well, we got that reminder on Sunday. On the way home from church, we always ask Jared and Allison what they learned or did at church. Allison showed me the picture that she made. Look closely at the verse and then what she wrote in one of the boxes, I think you will know what I mean.

The verse is a little hard to read, it is...Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Needless to say, I was crying tears of joy when I looked at her paper.

Thank you Allison for this precious gift, it will be added to our memories to cherish.

Big News!

No....we are not having a baby:-)

We are 1 step closer to joining a diaper free world. Jordan is potty training. Yesterday he had his light bulb moment( when it clicked, he knew that feeling meant something was about to happen) in Target of all places. We were school shopping for Allison when I heard these wonderful words...."mommy, I have to go pee". We raced to the front of the store, found the bathrooms, went inside, found the kiddy potty and he did his business. He was so proud of himself. He was rewarded with a bag of popcorn( which he was kind enough to share with his mommy and sister).

Everyone sing with me..........."Mommy, wow, I'm a big boy now".

Anyone have any suggestions on what to do with all the extra money we will be saving........"take a vacation", you say, what a great idea!

A Summer full of Surgery

Yes, that is what the Summer of 2010 is turning out to be. It started with what we thought was going to be a simple tonsilectomy and turned into not 1 but 2 ear surgeries.

Allison had surgery today on her left ear. She has cholesteatoms in both ears. Today the doc cleaned out the scar tissure from the repeated breaking of the sac behind the eardrum, removed the eardrum and 2 of the 3 bones in the middle ear. He shortened her ear canal, so no yuck can get in. He was careful to leave enough of an ear canal that Allison will still be able to wear her ear molds with her Cochlear Implant. She was in a fair amount of pain when I saw her in recovery, but right now she is happy on pain med and playing with play-doh in the family room where there is carpet, any othertime, she would be at the kitchen table, yes the joys of having surgery.

We are waiting for her to heal from this surgery before we schedule the right ear, oh am I not looking forward to telling her that she not done yet.

Update on Allison

Allison's surgery is next Friday, July 23rd. The doctor wants it done sooner rather then later, which means no family reunion for us on the 24th. :-(
The plan is to move the wire of the CI back into place and take out both of her eardrums and shorten the ear canal, so no bacteria can get into the cavity where the eardrum was.
We are hoping that this is the all the surgeries Allison will need and that she will be able to enjoy her last few weeks of summer before school starts again.

A Bit of Good News

Yesterday I took Allison to her audiologist to check the electrode that is in her left ear drum, we wanted to make sure that it was not causing her problems.
After running the necessary tests, it was determined that it was not an actually electrode but the lead wire that was in her ear drum.
This means that right now all the electrodes are still in place and working as they should be. It still means that it will need a surgical fix, but there is no risk of the implant failing.

We still don't know when they will do the surgery, we are hoping in the next 2 weeks or so. We would really like to enjoy the last few weeks of summer without this hanging over our heads.

Thank you for the prayers, keep them coming.

Allison's surgery

All went well on Friday in regards to Allison's tonsil and adenoid surgery. The doctor came to see us and told us all went well with that part of the surgery. Then he shared the bad news, while cleaning the mounds of wax out of her ears( I have never meet such a waxy kid) he found that both ear drums are retracted and paper thin, possibly from repeat ear infections( though she never complained about her ear hurting or never ran a fever) or it could be the Eustachian tubes not working. The left ear drum is so thin that an electrode from her CI has broken through. Needless to say we were shocked and a bit scared at the thought of the electrode being exposed to the outside. This needs to be corrected in the next few weeks. Allison is at risk for infection and failure of her CI if we let it go much longer.

Allison is looking at an additional surgery where they will fix the electrode and then most likely take both of her ear drums out( being deaf she does not use them anyway).

What an awful way to spend the summer, but at least we found this out before any serious damage was done.

I will give updates soon.

Please keep Allison in your thoughts and prayers. This is going to be rough on her.

Summer Time

It is hard to believe that a new month is starting this week. Summer always seems to go by so fast.

We have been busy enjoying the relaxed mode and not feeling the pressure of having to get school work done and getting to bed at 8:00 each night. Jared and Allison spent a week with their grandparents in Cleveland 2 week ago and last week was our church's VBS.

This Friday Allison goes in to get her tonsil and adenoids taken out.......I know, what a way to spend your summer vacation, but I would rather get it done now and not have her miss 2 weeks of school in the fall. She is not thrilled about having another surgery, but the unlimited ice cream and Popsicles is making up for it. Because of her implants they will need to take them out the "old fashion" way instead of zapping them out. The doctor does not want a stray electrical current to short out the implants. This might make for a little longer recovery.

Allison's Mapping 5-10-10

Allison had another mapping for her CI on Monday.
I picked her up from school and while she was taking off her FM boot, I was able to talk with her SLP. She shared that Allison will do therapy with just her right CI for 20-30 min at a time. This is such an improvement from when she was first implanted, she hated having just her right one on and fought us tooth and nail to do any therapy with just that one. I was thrilled and told Allison so.
On to Children's for her mapping. After sharing the news with her audiologist, we went to the soundbooth.
We were able to get 30-45dB's across the board, once again this is an improvement over the last test. In the mapping room, Allison showed improved consistency in her responses in the right ear. I truly think she heard in the soundbooth, but was hesitant to respond, she kept looking back at me to see if she really heard what she thought she heard. I so wanted to tell her "yes, you heard that beep", but I also didn't want to sway the test results.
Her audiologist showed me the new Nucleus 5, pretty cool! After talking with Bill, we decided to wait until both processors are out of warranty before going to our insurance company which will be next year. Hopefully, they will have the rechargeable batteries for the Nucleus 5 by then.

On another note, it looks like Allison will have to have her tonsils out this summer. We have an appointment with an ENT on June 7th. I know, what a way to spend the summer, but I would rather get it done and not have her miss 2 weeks of school in the fall. She is not a happy camper.

Jared's 9th Birthday.

Happy Birthday Jared.

Time for Bunk Beds

The time has come to move Jordan from the crib to his big boy bed. We held off doing this until we moved and he was adjusted to the new house.

He has been in his big boy bed for about a month and is doing great. He feels so grown up. Now if we could just get the potty training down life would be good.

Allison's Hulla-Hoop

Check out this video of Allison Hulla-Hooping( is that even a word?)




Man I wish I could move my hips like that.



Please ignore the background voices, moms that have more then 1 child will understand having to discipline one while taping the amazing things another can do.

Spring 2010

Here are some update pictures of the kiddos. They enjoyed coloring Easter eggs at Grandpa and Grandma K's house.

Video of J and A's school program

Sorry this is late getting on here, we have had a very busy month. We moved into a new home a few days ago and up until that point, my days were filled with packing, moving and spring break for Jared and Allison.



I finally feel like I am somewhat settled in the new house, so I can take the time to upload these videos.



Enjoy a trip to South American through song.


Allison is in the top video, she is in the 2nd row behind the boy in the striped shirt, although you can't see her very well.

Jared is in the 2nd video, he is the last boy on the 2nd row.

School Program 2010

Last night was Jared and Allison's school program and open house. Bill and I split duties along with the grandparents, the women saw the program and the men were in the classrooms. It was a great night. It is on nights like these, that I am truly amazed at how far my hearing impaired son and deaf daughter have come.

I will try and upload some videos soon, but for now enjoy the pictures.

Jared's appointment

Today I took Jared to the ENT to check on this recent hearing drop. After the doctor poked and picked at Jared's ears, he told us that he was not all that concerned about the recent drop in his hearing. He did have Jared do another booth test, this time with his hearing aides on to see what his voice discrimination was, it was about 77%. The doctor said that he thought what we are seeing may be because of his recent illness.

We will take him back in 6 months for a recheck and we will see what happens.

When routine becomes not so routine

I took Jared to his audiologist yesterday for what I thought was a routine hearing aide check. Well, I have learned that nothing is routine when you are dealing with a kid's hearing loss.
After telling the audiologist that Jared had been sick with walking pneumonia about a month ago, she decided that he should do a booth test. She check his ears and cleaned out the wax-YUCK and then did the test. He had a major drop in his hearing, going from 78 dB's to 87 dB's in his right ear and from 72 dB's to 85 dB's in his left. I am wondering if he was just tired from a full day at school, but nonetheless, a call to his ENT is in order for today.

So, just when we get Allison heading in the right direction it is time for Jared to throw a wrench in the plan.

Such is life.

Thank goodness for a wonderful audiologist!!! I call our ENT and the earliest appointment they could give us was March 18th. I called the our audiologist and told her, well that was just not acceptable to her. She called and got us appointment next Thursday.

A Sweet Moment

Tonight, I had to run to Giant Eagle to pick mini-marshmallows for Allison. Tomorrow is the 100th day of school and she needed 100 of a food item. Of course I did not know about this until about 6:45 pm when I looked in her folder and saw the note. I took Allison with me, so I could make sure that I got the right ones. While I was checking out at the self-checkout line, Allison was at the end making sure that the marshmallows did not get smashed. The manager came over to help bag the items and saw the marshmallows and asked Allison about them. Allison explained what they were for and that she had to go home and count 100 of them for school. It was a moment that will never get old for me, my deaf little girl was talking and answering questions. I did not have to explain to the manager that she was deaf and could not hear her, I did not have to interpret for her, I could just stand there and listen to my little girl talk. The amazing thing is, I don't think the manager even knew, Allison's hair was down and covering her ears.

Oh the Joys.........

of having Cochlear implants break. Allison came home yesterday and showed me that her left CI was being held together with tape. After looking at it, doing some investigation about what happened, it was determined that she broke it while trying to get her FM boots off. What were those teachers thinking? I know we want her to be pro-active and start taking responsibility for her CI, but pulling a FM boot off of the bottom of her CI is going a bit far for a 7 year old. She is able to put the battery in, turn it on and put it on, I think that is all the responsibility she can handle right now.
I had to put a call into Cochlear to see about getting a new one, only to find out that it is out of warranty, which means we now have to wait for our insurance company to approve the replacement.
I guess I better stock up on tape.

On a happier note.......I got a email from Allison's SLP today. She wanted to let us know that Allison is starting to be able to identify words with her newer implant!!!! She is also not fighting wearing only that one for her therapy sessions. Amazing news!!
Keep it up Allison, we are going to get that right ear working yet.

Allison's Mapping

I can finally say we are on the right track. Allison had a mapping today for her newer implant, the one that was causing her so many problems a few months ago. I knew that we were making progress here at home, but it was nice to get the official word from the sound booth. Allison is hearing at 20-25 dB's across the board with the tones and at about 30-35 dB's voice recognition. That is an amazing gain from where she was about 3 months ago. We might even be well on our way to have the right ear match the left ear. What a novel idea, hearing out of both ears.

So Precious

While Allison was home sick today(I think she could have gone to school, but the school has a strict policy that they must be puke free for 24 hours) I caught this very precious moment between Allison and Jordan.

I never thought that when we found out Allison was deaf( I did not even know what Cochlear Implants were or how amazing they were) that I would capture her reading a story to her brother.

Thank you, Cochlear Implants for giving my daughter the gift of hearing.