Friday, March 16, 2012

Diagnosis

No easy way to start this post so here it goes....we found out on Tuesday that Emma has partial, permanent, hearing loss in both of her ears.


This came as a complete shock to Matt and I.  Yes, I was at the U of M ears/nose/throat doctor but I went with one banana at nap time thinking we were going to have a quick conversation about tubes.  5 hours, 3 tests, and an ear molding for hearing aids later, I left to drive home. My phone died by the time the banana was gone.  So when I showed up 3 hours late at dinner time, Matt knew something was wrong.


We had no indication this was coming. Emma seems to be hearing fine and her words are actually coming along great. But, apparently, partial hearing loss is like that. If we had not had her tested, we may not have known until she was 4 or 5 when her speech was delayed.


In fact...when we got home, my pediatrician actually said the hearing and eye test were not required if I did not suspect anything. I scheduled the eye appt about a month ago when a few ppl mentioned that Emma had a lazy eye (of course I didn't notice that either) and the hearing test got scheduled routinely at that time.    So while this is heartbreaking for me as a mama, I am very glad we were able to detect this early.


We are still absorbing this information and trying to understand what it means. If you know of anyone who also has a child who is hard of hearing, please pass their information along (or pass them my blog). To be brutally honest, hearing loss was not one of the needs we said we were comfortable with when we first started Emma's adoption. Emma's referral listed her hearing as 'normal'.


Some friends have asked me if I am upset with China for the missed diagnosis.  After 4 days of thinking about it, I realize I am not upset at all. God knew better then to list her file as hard of hearing.  He knew we were her parents and lined up everything to make that happen. Matt and I may think we know what we 'need' but God is the only one who really knows that.  We just have to let go and trust that things will work out!


In the meantime, Emma is just adjusting great. She says mama now and I know she means me (for those adoptive parents out there you know how amazing this feeling is)!  She also says dada, nana (banning), more,  poo poo, & bye bye.  Moreover, we have twice caught her fake crying after she 'fake' fell down  while playing with Lexie.  Smart girl. :-)


Emma in FL in early March - see full pictures of our vacation here!


Please pray for Matt and I as we figure out how to navigate these waters. Pray to give us peace with this diagnosis and to give us the guidance of what we can do to help our little miracle continue to grow & adjust.

14 comments:

The Waggoners said...

I just stumbled upon your blog via Nicole Chryst. I have a good friend and a cousin who both have deaf and/or hearing impaired children. E-mail me at cydilwaggoner [at] gmail (dot) com.
They would both be excellent resources (one adoptive, the other bio).

Tera said...

Kelly at www.kellyskornerblog.com has a hearing impairment. It sounds similar to Emma's because she is able to hear but using hearing aids for help. I have had a weird feeling that this may be a possibility for us?? I don't know why but it seems like God is trying to prepare me for something like this. Praying for you!!

Tera said...

Oops, that is supposed to say that Kelly's daughter is hearing impaired.

Pam said...

God knows exactly what he is doing and what you are capable of handling. I know how hard this new information must be for you! On another note, looks like you guys had a wonderful time in Disney! We just got back yesterday! Have some of the same pictures! Wish we knew you guys were coming our way. It would have been nice to try and see each other!

Helen's dollsaga said...

This is very sad to know that Emma & her family have to face more challenges than most of us do. but I am sure emma will be just fine! there are many great people who are truly inspirations, I am a follower of this Mommy's blog about her son Matthew who's also adopted from China & suffers from hearing loss, there are many heartwarming posts, here is one of them, its about the child meeting his favorite characters in Hollywood studio, the staff there made his day so special! I think if you are brave enough to face the challenges, the world will give you support: http://roslevegefamily.blogspot.com/2010/09/day-2-hollywood-studios.html

a blog full of weldons. said...

thank you so much for sharing! it is a blessing to pray you through this time of research and finding peace with this diagnosis. i have a feeling that she is going to surprise everyone :)
emery has an "undetermined" hearing impairment. her speech is very delayed and the hearing tests are inconclusive. it can be quite frustrating.
your gal is so stinkin adorable!

Anonymous said...

Sorry to hear about the unexpected diagnoses. Just wanted to let you know that our daughter had amblyopia too. Unfortunately hers was not caught until she was 5 years old. Luckily it was mild and after 2+ years of patching, she is just about 20/20 in both eyes now.

Stacy said...

I will be praying for your family. I found your blog through China Adopt Talk bc I was looking for information on preemies. We are looking at a girl with low birth weight and narrow head in a different country. Our son adopted from China is hearing impaired (bilateral microtia/atresia) please feel free to contact us if you ever have questions!

Blessings,
Stacy
www.bigcrazylove.blogspot.com
(adoption blogs on sidebar)

Tracy said...

If anyone can handle it, you guys can. Best wishes to you all. Love your Disney pics!!! Love, T + P + E

Anonymous said...

Hi,
my name is Emily and I have been following your blog for a while. Sending you love and prayers as you travel this path. Also, there is a lady i know that just returned home from China who adopted her little girl who is deaf. She teaches children you are deaf.I chatted with her soon after I read your blog post and encouraged me to have you contact her becaause she has lots of resources to help you. If you are interested ,email me @ emjay0822@hotmail.com.

god bless
Emily

Mortensen Family said...

Praying for you and Emma! Praise the Lord for your heart that is settled with God's plan for your family. Thank you for sharing so we know better how to pray.

Kathy said...

After adopting from China in 2006 we realized our daughter had a severe hearing loss. This was unexpected for us. We did not find it as quickly as you have. It is a very manageable special need. Please email me with any questions. Kapijor at Mac dot com. We live just outside Washington DC. Kathy

Lindsey said...

I linked to your blog through No Hands but Ours. My husband and I are going to adopt from China. I hope to start the paperwork soon!
I am a speech-language pathologist for an elementary school and I work with several hearing impaired children. There have been so many advances in hearing aid technology over the years. You will be amazed at what they can do! Cochlear implants and other devices (FM systems, etc) are wonderful too. Early intervention is key and it looks like you are on the right track! The children I work with have learned to use their hearing and have learned to speak without using sign language through the auditory-verbal approach. There are many communication routes to choose from and your SLP and audioloigst can help you decide wha's best for your sweet baby and family. Good luck!

Wife of the Prez said...

My son came home with the known needs of TOF (heart) and cl/cp. What we didn't know is that he is deaf in one ear.

I can SO RELATE to what you shared about not being open to that need. In fact, it terrified me and we never marked it on any applications until our last adoption (after our son was diagnosed).

I am not exactly sure what scared me about it, but I was not *open* to hearing loss or deafness. Except now I am and you know, it isn't as bad as I imagined.

Now, I'm not going to lie. He struggles so much with his speech. In fact, he talked so little in China (only grunted at 5 years old) that we really suspected he was autistic, but DH and I have a "no matter what" peace about bringing our children home ... so we brought him home in the summer of 2010 and he was diagnosed with deafness in one ear about 9 months later. Yes, it took that long, and he was 5 so don't feel badly for not knowing.

It is a HARD need to diagnose, especially if there are other needs that could account for delays or behaviors related to partial hearing loss (for our son cl/cp).

Anyway, please fee free to email me at cljjs (at) yahoo (dot) com if you wanted. Our son had his BAHA placed surgically last October and his device put on in December. We go back in about a week for his next tune-up and we have no regrets getting the BAHA.

Our son's cochlear works just fine. It is his middle ear that is all malformed so the BAHA basically allows the sound to bypass that area. I blogged about it here:

http://roomforatleastonemore.com/2011/03/17/update-on-lil-dude-the-good-and-not-so-good/

And then here:

http://roomforatleastonemore.com/2011/12/14/baha-part-1-lil-dude-hears/

And I need to do an update post. :) I will probably do that next week and cross-post it on NHBO as well.

Big hugs,
Leslie (also Mommy to a sweet Kunming girl)