The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Thursday, September 25, 2014

Hearing Aids for Natalie

Today Natalie and I went to the Riverton hospital to have her fitted for hearing aids.  It's a process, and might take some time before she actually gets them.  She seemed excited about it, and I was happy to see her happy.  She is planning to get a colorful hearing aid, and is proud of it.

Natalie has grown and matured so much in the past several months....AND she loves to go to school and enjoys her classmates.  I think we might have found the right place for her in school.  The fact that she is happy to be there is worth a million dollars.  She truly is happier.  She is with a group of children who have disabilities.  All sorts of different disabilities.  Natalie likes to help them and enjoys entertaining them.  She appreciates their differences and understands them.  It is so sweet the way she talks about her friends...she really cares for them.  

I was unsure of the program at first, as Natalie is more advanced and needs more of an academic challenge; therefore, we met as a team (teachers, administrators, etc.) and have come up with a plan to create a balance. She will spend most of her day with the regular 4th grade general education class, which is good for her learning and social development.  Natalie has a new friend in her 4th grade class who has taken her under her wing.  I am so thankful for this sweet little girl.  She is assigned to be Natalie's peer tutor.  It's amazing to me how things seem to come together, and for Natalie she is in good hands.  


This is just a sample hearing aid...fitting for size.


  1. Yay Natalie!!!

    I watched the youtube video of you and your sister's story and read all the blog post over the last couple of months and I'm so grateful your both doing so well. I was so touched by the story I nearly cried at the setback you and Alice endure even though I knew you two had a great outcome

  2. I am so happy for Natalie to get hearing aids AND a new piano (hopefully!) It will seriously open her world if she can hear! Be patient, she will catch on quick! I love you guys!! It's so awesome to read your posts and to see your adorable kiddos!! I'm glad you have found a place in school for Natalie...her confidence and self esteem are SO important! We are dealing with this with our 7th grader now and I have to remind myself that the education is SO much more than the grades and assignments!

  3. I teach hearing impaired kids, and just wanted to let Natalie know how awesome she looks with a hearing aid. Hearing aids have come such a long way in the 12 years I've been teaching. She's lucky to be able to experience new digital hearing aids that come in different colors with cool ear molds too. I don't know if the audiologist brought this up or not, but there are FM systems that wirelessly transmit the speaker's voice to the hearing aid and block out background noise. My students especially like leaving the microphone on a table and spying on their friends. In our county, the educational audiologist puts the FM on their IEP and supplies it for the kids. Also, take a look at hayleigh's cherished charms. A little girl came up with the idea for hearing aid jewelry. A lot of my kids make their own. If you or Natalie has any questions, feel free to contact me.

    Oh, our school audiologist also fits "loaner" hearing aids once the kids have medical clearance to wear a hearing aid from the ENT. Since it takes forever for hearing aids to come in because of insurance and all sorts of other reasons, she fits the kids and documents how they're doing in order to help the parents in making decisions about the different options that come with some hearing aids (like T coil, fm compatibility, varied programs for noise and quiet, etc.) You might want to check with your county and see if they offer something like that.

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