Stomping Grounds Fun & Ear Trouble?

Today was fun! We had a great play date at Stomping Grounds with some friends, followed by a relaxing afternoon - something that was much needed!

 

We have been really busy this week with Bella's stuff and have had a lot weighing on our minds. we got some pretty disappointing news about Bella's ears. We don't know much yet, we are actually waiting to hear back from her ENT who wont be back until next Tuesday.

 

We found out that Bella has something called Mondini Deformity, this is a inner ear malformation that could be very devastating to us. Bella's type of deformity is characterized by an enlargement of her vestibular aqueduct, bilaterally (both sides). We don't truly know what this means for Bella, in our case, but we do know that this is associated with balance issues (vestibular system) and the majority of children will develop some degree of hearing loss in their childhood years. Bella's physical and occupational therapist have become very interested in this, as Bella has been struggling tremendously with balance issues for a long time now. They have had a lot of trouble trying to perfect her sitting and standing balance and are noticing that one day she has balance then the next she has none. They think this has a lot to do with her Vestibular system.

Her therapist have explained to us that you have to have three components to walk. Your eyes, ears and legs/ feet muscles. We do know that a child's body can overcome vestibular dysfunction, but they have to have at least TWO of the three components. If you are blind, then you need your vestibular system (ears) and legs to function. We already know that Bella has some muscles issues that are predominantly worse in her legs than arms and now we might be dealing with vestibular dysfunction? This is going to be a big hurdle to jump...

We need to either get Bella's balance stabilized soon, or get her muscles stronger in her legs so that she can overcome the balance issues. It really sucks that we are dealing with 2 main hurdles rather than just one now! - when it comes to walking at least..

On the other end of the balance problems is the potential hearing loss, this is something that we have not even remotely been prepared for. We have always said that Bella is going to go through a lot in her life and we are at least blessed to be able to help and talk with her about it. Before having children, one of my biggest fears was to have a child who was deaf. I could not imagine my child not hearing my voice. It was something that literally terrified me.

Is this God's way of proving to me that we will be alright regardless? If so, he can stop testing us now. I think we have been tested enough this past year and I am not sure how much more I can take. God, please spare Bella her hearing, or at least the majority of her hearing.

Once we find out more detail about this and how it may affect Bella's future, I will be sure to share it with you all. It is just something that I needed to get off my chest for now. I have been trying to keep it in the past few weeks until we know more, but that was not working too well.