Natalie 3 Months/Visit to UNC

Tim and I headed to Chapel Hill this past Monday for Natalie’s first appointment up there at UNC. We stayed overnight at the Ronald McDonald House which is about 5 minutes from the hospital. It is a big house, with about 30 rooms. They are small rooms, with 2 small beds and a bathroom but then there are huge common rooms with t.v.s, a large kitchen, eating area, etc. You can pretty much eat whatever food they have in their fridges or cupboards too. We rented a movie from redbox and watched it on our dvd player while Natalie slept. It was nice to have some peace and quiet away from our other kids. We are planning on staying there again in 2 weeks.

We were very impressed with the program at UNC. We first met with our audiologist whom we will have until Natalie gets implants(assuming she gets them... then she would have a different audiologist that specializes in cochlear implants in Durham which we would see.) They did a repeat ABR test which measures how severely deaf she is. We didn’t get a response in either ear again, which we were expecting but they like to redo the test since it is such a huge ordeal. Plus, they have had some tests done before where they got a little different results. Natalie had to be ready to eat and fall asleep for her appointment and she did great. So, since there was no change on her test, it just reaffirms that hearing aids most likely won’t bring her to the level that she will need to develop normal speech language thus doing the cochlear implants. She will still get hearing aids, which we got molds for her and will be fitted at our next appointment. The hearing aids will still allow sound to get into her ears and help stimulate the cochlear nerve and any sound is good sound at this point. Throughout the next few months we will continue to go up and see what level the hearing aids are bringing her to. More on that later...

We met our doctor, Dr. Craig Buchman and Tim and I both really like him. He does a lot of these surgeries and we feel so comfortable with him. We met 2 kids in the waiting room that were in for rechecks on their implant surgeries so it was nice talking to their moms about their experiences. After discussing everything with the doctor, we are under the impression we can try to get her implants done between 10-14 months of age (assuming the insurance company allows before the age of 1.) We can do them both at the same time if we want or each one individually. We will have to read up on the pros/cons of that later on down the road. She will be 10 months on January.

Of course all of this is dependent on her MRI which will be done June 30th. Our doctor will be in Sweden at an implant conference and will e-mail us the results of that shortly thereafter.

This may be too much information, but I am just trying to keep a journal of our experiences with this. 

I wish I had better pictures to share of Natalie. A lot of the pictures she isn’t smiling but I can assure you she is a smiley baby. It is just hard to get her attention when I am trying to take her picture when she can’t hear me at all. She smiles a lot when you are looking at  her directly and it melts your heart.

She just turned 3 months yesterday. When they weighed her at the doctor, she was 13 lb., 10 oz. We just our in love with her so much.

COMMENTS:

Anonymous

She is so beautiful. I'm so glad you guys are getting some good help. My ward and I earned money for the Ronald McDonald House. Who knew it would someday help my own family?:) I love you guys and am thinking of you and praying for you. Oh, and by the way, you have the cutest blog I've ever seen.-Katie Poland

Friday, June 18, 2010 - 06:17 PM

Shelley Kay

I can't believe she's already 3 months old! She is such a doll.

Saturday, June 19, 2010 - 05:39 AM

denise

I am glad you had a good visit to UNC and with the drs.  We stayed at  a Ronald McDonald house once also. It is such a neat program. 

What a beautiful little girl she is!

Tuesday, June 22, 2010 - 11:50 AM

Nana

I have a special place in my heart for her!  She is sooooo beautiful.  I am so nervous for this upcoming with her eye test, MRI, etc.  I just love her!

Natalie Paige - Hearing Loss Update

Lots on the agenda with little Miss Natalie. Here are some updates on her hearing loss journey.

A few weeks ago we met with the geneticist to discuss Natalie’s hearing loss. Genetics are sometimes not black and white since that part of science is always evolving. The doctor did a thorough exam on her and could not associate any syndromes physically that would be related to her hearing loss. We went ahead and had her tested (she was brave getting her blood sample taken) for a few things that can be the factor. One of such is kind of common, it is called Connexin 26 gene. You can read about it here. He said it was about a 50/50 chance she may have it. It is a gene mutation that causes hearing loss. If she does have it, it is usually a 25% chance that one of our kids would have it, which may explain why Sophie and Dylan are just fine. We have to wait about another month til we get the results back. There may be something else or we may never know the cause. I am not sure if the rest of us will be tested at some point either... just have to wait on the lab results.

Sunday night, Tim and I are heading up to Chapel Hill for Natalie’s first ENT appointment on Monday morning. We also meet with the audiologist and have another ABR test done which measures exactly how severe her hearing loss is. We are ready to jump into all of this and get going. The doctor we are seeing is supposed to be one of the best in the country with cochlear implants. You can read about him here. The audiologist we are seeing is the director of the UNC pediatric audiology team (read about here) so we are glad to be in good hands.

(Educational Part)

The picture below is an audiogram and we will get very used to them. The vertical column measures decibels and the horizontal measures frequency or pitches. The 0-35 range is normal hearing. You can see that the bigger the number of decibels the more severe you get. The ABR test does not test greater than 80 because it would be too much for the ears to handle. When Natalie was diagnosed in April, she was at least 80 so on the severe/profound line. We don’t know how profound since they don’t test greater than 80 so she could be borderline on the severe side. When hearing aids are placed, they amplify sound and will bring you up about 40 decibels. On the chart you can see different letters in boxes. This is where normal speech is heard and learned. If hearing aids only could bring her to a 40, she would still not be able to hear language which is why she is a strong candidate for cochlear implants. Some kids born with mild hearing loss would do just fine on hearing aids since it would bring them within a normal range for speech and language. The goal is to get her to a hearing level where she can develop normal speech. 

I saw the most touching thing on youtube where a baby  hears his mothers voice for the first time with cochlear implants. You can watch it here. It made me start wondering, “What are the first words that I want to say to Natalie?” I can’t wait for that day. 

On June 30th, we head back up for a hearing aid fitting and her MRI. She has to be sedated 4-6 hours and her MRI is at 1:30, so I am not looking forward to that (and I doubt she is either.) I am not sure when we will have the MRI results, but the MRI is checking : 1.) Does she have the Cochlear nerves and 2.) The anatomy of the inner ear. We are anxious to see how everything turns out. We will continue to have our speech therapist come out weekly, (although she has the month of July off) but I am learning so much each time she comes.

In the meantime, enjoy some recent pics of our dear, sweet, precious, chunky, loveable and squeezable Miss Natalie Paige, who by the way has started to enjoy sucking her thumb.

COMMENTS:

Grammy

She is looking chunky. And, looking more and more like Dylan!

Thursday, June 10, 2010 - 10:57 PM

Shelley Kay

She really is so beautiful. And I agree with Mom- she's starting to look a bit like Dylan.

Friday, June 11, 2010 - 05:14 AM

Kelli J.

She is just adorable! And I love that she's sucking her thumb. Emily loves her hands and is often found sucking away on them. It is pretty cute.

Friday, June 11, 2010 - 08:18 PM

Amber Bennett

She is so pretty.  I hope all goes well with her.  You are in my prayers!!

Saturday, June 12, 2010 - 03:22 PM

Marianna vB

Awww shes so cute. I'm praying for her. By the way this is Marianna van brederode from carmel ward. I don't know if you are reading this or not but i just wanted you to know that I just made a blog and its called farawayfriendzmario.blogspot.com

Monday, June 14, 2010 - 09:39 PM