on Monday, March 21, 2011
Labels: Mommy Ink
I am grateful for the return of school. The comfort of our tight schedule makes the chaos a little quieter. My online silence has been due to new developments and lots of doctors appointments. That and the harsh reality that I have to sometimes get myself to a better place mentally before I throw up all over my blog.
Newest developments….Bella has officially been diagnosed as having Soto's Syndrome by her geneticist. I thought I would feel immense relief at having a diagnosis…something I could point my finger at in the really tough moments and blame. But I cried. Hot, angry, sad, disappointed tears. Then, as I do, I sniffed, I wiped and I planned. I plan for therapies. I plan for futures. I plan for survival of this madness. I plan to make it feel like I am not spiraling out of control into what some days feel like a rather dark hole. But God is gracious to me and when I cry out He pulls me close to Him and whispers into my mother's heart how much He loves my Bella. That she is His Bella. That He formed her and He alone can plan her future. And then He tells me the same about me. Ahhh, peace.
I have once again been asked to lay her on His altar. We saw an ENT in February and after testing discovered that Bella's eardrums do not vibrate properly. The doctor's first thought was that it was due to trapped fluid so she put Bella on medicine to dry the fluid up for 30 days. We saw the ENT again Wednesday. Bella's left ear shows marginal but still dismal improvement and her right ear shows no change at all. The doctor thinks now that the fluid has been there a very long time….the concern being that if there a long time that the fluid could have destroyed the small bones in the ears that create sound. I asked the doctor if Bella hears like we do….she said Bella does have some hearing in her left ear, possibly some in her right ear….but it is all muffled and garbled much like Charlie Brown's teacher. No wonder when I tell her I love her she says "shoves chu" back. Oh sweet baby girl. Bella will have surgery Friday morning to insert tubes in her ears. The hope is that the tubes will remove any remaining fluid and correct the problem. We will retest her hearing in 30 days after the surgery. If there are no changes then we will walk that road. I can't think anymore on that.
A dear friend reminded me of two things; both much needed changes in my perspective: 1) Though Bella is on the autism spectrum she is loving and snuggly and seeks me out whereas many children on the autism spectrum are much higher functioning in their daily lives than Bella but they don't love on their mommies like Bella loves on me. Oh thank you Jesus that you know me so well to know that I could not survive without her snuggles! 2) That even if we end up with hearing impairments that is most often fixable with hearing aids and the like…thankfully we are not facing something unfixable like blindness. Harsh, but true.
So while this may not be my most personality packed blog post it gets you up to date. Right now that is all I've got to give, everything else goes to Bella.
"He tends His flock like a shepherd: He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young." Isaiah 40:11 NIV