We have had a busy week so far.
Monday, Natalie had visited an opthamologist to have her vision checked. Since she has lost one of her senses, her vision has been heightened and they always recommend a thorough exam. She has a little bit of astigmatism in both eyes (which can be very normal for a 3 month old) but it can also be an indicator of lazy eye. We haven’t noticed any turning in of the eyes or them being crossed so we aren’t really that worried about it, but she will have that rechecked at 9 months.
Monday afternoon she had to have an EKG done. This was to rule out a heart condition called Long Q-T syndrome that can be associated with hearing loss. This only took about 10 seconds once the electrodes were placed and was a very easy appointment (despite me parking in the wrong parking garage and having to walk forever.) Her values on this test were normal, but on the higher end of normal so we will recheck her around 12 months. I think most kids that have this syndrome, the values would have not been normal so we are not worried about it.
(at home after a bath)
Tuesday was another speech therapy appointment. (or as they call.. Early Intervention Therapy.) This is Natalie’s early interventionist... Jenni. She assesses Natalie each week for an hour, teaches us how to communicate with her by using auditory verbal therapy. (so much more on this later.) She brings different toys that make noise and she evaluates her each week. It is a well rounded approach since our appointments at the audiologist are about monthly.
Wednesday Tim and I took Natalie up to our 2nd visit at Chapel Hill. First up was her hearing aid fitting. We have the best pediatric audiologist in the state (if not the whole country) and are very fortunate for here expertise as well as her compassion. She will be a new grandmother at the end of July and she has been so excited playing with Natalie as she will be having a granddaughter too.
The hearing aid fitting was a 2 hour appointment. We were taught how to take care of the hearing aids, fitting them properly in her ears and all the logistics of them. We didn’t get any behavioral response to the hearing aids yesterday. They don’t do any sort of testing like she has previously had to see what levels she can hear at, so Pat started her off at a conservative volume level (although there is so much more than goes into this.) The hearing aids are connected to the computer and there is a software program for the brand she has... Naida, made by Phonak. Pat adjust and tweaks them in the computer and then programs it to that particular setting. We then can adjust the volume/decibel levels a little on our own. The hearing aids are so high tech and it was interesting learning about them.
We pretty much will go up monthly and get new molds fitted as her ears are changing rapidly. We will fine tune the hearing aids and make adjustments as necessary. When Natalie gets a little older, we can start doing more behavioral testing to see what she can hear and get a better evaluation at that point. Right now, it is a trial period to see if she hears anything at all. We know going into this, that since she is so profound, hearing aids may never benefit her but if they get some sound into the cochlea that is good. By going up to our monthly appointments to Chapel Hill and using our early intervention therapist, we will start to get a better idea if she can hear anything and when/if she is a better candidate for cochlear implants. (which is most likely.)
Here are a few pictures of our audiologist and getting her hearing aids.
Right after Natalie’s hearing aid fitting, we headed straight over to get her MRI. That morning was a little difficult, since Natalie couldn’t have any breastmilk after 9:00 am. We checked in for the MRI at 12:30 and didn’t go back til about 1:15. She was not a happy camper during that time and finally cried herself to sleep. They gave her a liquid sedative that they put in a syringe and forced her to drink. It was hard for me to watch them do that. I thought she was going to gag on the syringe. She didn’t fall asleep immediately but took about 5 minutes and it started to relax her and she just looked like she was taking a nap. The other reason it was hard for me to watch was because we put our sweet kitty Phoebe to sleep last year and it reminded Tim and I a little too much of that experience.
Once she was sedated, they wheeled her into the MRI room and put some nice warm blankets on her. Tim and I sat in the room while the MRI ran. She slept the entire 30 minute scan. Once she was done, our audiologist met us down there and made some more ear molds for her for our next visit (easier to do while she is sleeping) and we waited for Natalie to wake up. She kind of woke up and then fell back asleep again but the anesthesiologist said it was ok to go home. So, we put her in the carseat, strolled back to our car and headed back to Charlotte. We left Charlotte that morning at 7:00 and got home around 6:00. It was a busy day but it flew by so fast. Our next appointment up there will only be an hour, so I am very thankful for that.
Now... just waiting for the MRI results. Our audiologist e-mailed me today saying it was good news but we haven’t heard anything official from our ENT yet.
COMMENTS:
Amazing Story Missy..Hope all goes well with sweet Natalie..Technology is amazing now and I'm sure you're thankful for that.
Thursday, July 1, 2010 - 01:53 PM
You know, you are inspiring! I know you have more than I can even comprehend on your plate- but you are handling it with such grace! Those three kiddos are blessed to have you two as parents! I know that hearing loss and my birth defects with my leg are totally different things, but my parents were AMAZING. They did everything they could to make my life better and that is exactly what you are doing! Life isn't fair- never has and never will.... but it's how we handle what is thrown at us- and my dear, you are a champion! I wish I were still there so I could help while you are traveling for these long appointments! I just want to squeeze and snuggle with this beautiful baby, Natalie! Technology rocks! I walk on it everyday- so I am hopeful for Natalie! You have prayers and love coming from our little spot in Utah!
Thursday, July 1, 2010 - 02:02 PM
Sorry, I thought my name would automatically be added... the previous comment was from Erin Guenter! Miss you!
Thursday, July 1, 2010 - 02:06 PM
You guys really were busy! I am sorry that the MRI reminded you of Phoebe... how sad. I think had I been there, I would have thought the same thing. Natalie is growing up so fast, and it will be interesting to see what her future has in store for her. That's great that there was good news- hopefully we'll be able to hear exactly what that is soon!
Thursday, July 1, 2010 - 02:23 PM
Congrats on getting through this week! Her hearing aids are darling! I'm so excited to see them. Rowan thought so as well. He looked at the pictures with me and was excited to see a picture of Jenni. I'm glad everything is going well!
Thursday, July 1, 2010 - 06:17 PM
What a week! And we can now officially say we're PGY 4's, wahoo!!! Such a long day but it seems to have gone well. Natalie looks so cute with the pink hearing aid. And the audiologist said good news so I can't wait to see what the ENT says about the MRI. I can't even fathom all the information you are taking in on how to care for and help Natalie. I am amazed at all that can be done and so grateful that you are getting the best help. Love you and miss you! Give Natalie a love for me...and Sophie & Dylan too!
Thursday, July 1, 2010 - 10:50 PM
Wow, that is busy and what a trooper she's been. I can't wait to hear the results...her hearing aids are really cute!
Friday, July 2, 2010 - 09:33 AM
She is such a pretty baby! We're keeping her in our prayers.
Darcie
Darcie
Saturday, July 3, 2010 - 11:38 AM
Sounds like a very busy week for little Natalie. It looks like you are in good hands though. We will keep Natalie and you in our prayers. She is such a little doll.
Tuesday, July 6, 2010 - 05:49 PM
Wow - what a day!! I am so sure that you are happy that is over with. You and Tim are troopers! And the best parents beautiful little Natalie could ever want or need. I am so proud of you and yours, and so relieved that things are going as well as they are!
Tuesday, July 6, 2010 - 07:59 PM
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