Friday, April 27, 2012

Unstoppable

My Daughter is unstoppable... she will move mountains!   She has some obstacles that could get in her way but she keeps on going. 

Earlier this week I talked about my daughter's ear surgery (she had a tube put in her right ear) and I also mentioned that she has some ear issues.   She was born with her left ear deformed.  It is called Microtia.  In her case, her left ear is completely closed off... there is no opening.  So, she can only hear out of her right ear.  In most cases, this is an outer ear issue and the inner ear still works.  So, there could be some help with hearing aids.  

At home and in quite places one ear is just fine, but once you get some background noise, it is really tough for your ear to filter out the stuff you don't need and hear what you do need.  So, she has a "good ear" and a "bad ear" .  ***We don't actually call it her "bad ear" we call it her "little ear"  It reminds me of Nemo's lucky fin on Finding Nemo.*** At play parks and in a classroom setting, she has a hard time hearing instructions.  
We have been keeping a close watch on her "good ear" to make sure that it can hear.  We found that there was chronic fluid in it.  Meaning it sounded like everything was under water.  Not good for language and speech!  So, after several visits to the ENT (Ear, Nose, and Throat)  Dr, we moved forward with the Tube to help drain the fluid.

We have also been watching at her little ear.   We had some good new and bad news about her left ear.   Good news:  The inner ear works great and with help of a Bone Anchored Hearing Aid (BAHA) she could hear out of it!  Bad news: There is also fluid in her left inner ear... which could lead to brain infection!  And since there is no opening, there is no good way to get rid of it.  So, we are waiting and watching to see if it will clear up on it own.  If not, we are looking at more ear surgeries. 

We meet with a Deaf, and Hard or Hearing (DHH) specialist once a week, to working on language, speech and listening. 
On top of all her ear issues she also has low muscle tone, this is not connected to her Microtia.  Children with low muscle tone often have delayed motor skills, muscle weakness, and / or coordination problems. The fluid in her ears are not helping with her balance either.  So, getting around is a challenge for my little girl!   When she runs it look like Phoebe from Friends , she is about to fall over at any second!

We meet with an Occupational Therapist (OT) and a Physical Therapist (PT) once a month (each) to give us skills to help with her motor skills and coordination. 

 Now, these issues could make my daughter want to stop, not move.  She can't hear that well, and it takes a lot of effort for her to stay upright.  She falls down A LOT... a lot, a lot, a lot.  If it were me I would stay down, but she doesn't, she gets up and keep going.  Since she might not hear so well, she could be shy and sit off to the side, but she gets in and plays with other kids.

It is such a great example to me!  She has such a great attitude.  Her OT and PT are always impressed with her.  They tell me that she is such a hard worker, and that most kids give up on the exercises, but she works the whole session.  I am a proud proud mama!

We don't let the labels define her.  We are aware of them, and get all the information we can so, we can be the best advocate for her.  We use the resources available to us to get our daughter the best chance.  But we don't put her in a box.  She can do ANYTHING she wants to do (within reason!).

I am not writing this to get sympathy from you... I am writing it to encourage you!  If there is one thing my daughter has taught me is that attitude goes a long way.  She thinks she can do it, so she does.  Wouldn't my world be so different if I thought that way too! 

Go- Be UNSTOPPABLE!

***FYI- We think she is the most beautiful girl in the world and we would not change anything about her!***



4 comments :

Ellen said...

She is a beautiful child! Our children teach us so much!

Sharon-The OKI StampQueen said...

What a beautiful girl---and testimony! Prayers for your healing journey with her...and may you continue to bless and be blessed by all that the adversity-and overcoming of the same-brings! Blessings, Sharon

Jessie Saxton said...

What a sweet post...and a sweet little girl! I find it sad that you felt the need to include a disclaimer though...I commend you for choosing to parent a child with special needs! My son has a genetic disorder and autism, which we obviously did not choose,...so I know how difficult parenting a special child can be. GOD bless you for loving and caring for your daughter.

Crystal said...

Beautiful post and beautiful daughter! :-)

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