The days I never like to admit

  This morning is just one of those mornings. A morning where I've gotten maybe 2 hours of restless sleep. A morning after questioning all my parenting decisions, wondering if I made correct ones? or if I could have made better ones. One where I cant seem to turn it off and delve into house work or other distractions. My brain keeps drifting back. A morning of fighting off tears for who knows what reason? They're just there. Ready to spill out. I find myself wondering why. Why is this sometimes so hard on me? Why cant I be a fierce warrior mama like so many I see? Why cant I just be strong? Now in all honestly I dont always feel this way. Most days I have an overwhelming sense of love and blessedness for having such an amazing family. Just every so often, on a day like today, doubt sneaks its way thru. And I feel broken. Helpless. Unworthy to parent my children. I struggle within myself. Wondering why I feel this way. How DARE I feel this way. And the guilt consumes me. I ask myself if I even have the right? There are so many other children and parents with issues far greater than ours. You can see their strength as you watch their fight. And here I sit with minor issues, a beautiful daughter with a full life ahead of her, and am about to lose my mind. I feel so stupid. Im just so tired. Tired of appointments. Tired of hoping. Tired of the paperwork. Just tired.
   I just want to sleep. And sleep and sleep and sleep and sleep. Like how I used to deal with bad days. But I cant.          I want to.        But I cant...
   Here's to Monday, may tomorrow be brighter

Sigh.... still waiting....

    Hey guys! Quick update!

       So I got the call the next day from the surgery scheduler only to be told they were still going to wait on insurance. Definitely feeling deflated in this and that Im in a never ending battle. So honestly, I dont know when or where the Cochlear is going to happen But Im continuing with pushing forward in the fight, no matter how exhausting it has become. At our last hearing test we were told she was getting next to nothing with her hearing aids in, so we haven't been putting them in. Yesterday I decided to put them in again just to see if there was a response. There was! Celina would turn to us if we were yelling her name. It was kind of exciting, she tolerated them very well. When she was wearing them before, she would constantly rip them out. This time she just kind of put her hand up by her ear as acknowledgment that something was there but didn't rip it out. She just kept turning t us and smiling every time we yelled her name. Priceless!

   We had Celinas Craniofacial Team appointment as well. Everything went as expected. They don't want to see us for 2 years! The only suggestion was, at one of Celina's next surgeries they would come in and zap some of the redness away from above Celinas lip. Later down the road they will also do a revision surgery to thin her lip and pop her nose up a bit so it doesnt start to flatten due to scar tissue as she grows. Other than that, her teeth are coming in crooked but they say there is time for them to shift right so they are not taking steps with that as of yet. We met who will be Celinas speech clinician, who I was very happy to learn was not against the use of ASL when we do get the Cochlear. And then Psychology who said Celina seemed to be a happy, healthy, well loved little girl :) Along with a slew of other doctors it turned out to be a long day, but we left happy with no new major issues to report!

   In about 3 weeks Celina will see Cardiology for her PDA and PFO. At 9months old they were still present and hadn't shrunk, so hoping for good news. Thankfully if they haven't shrunk, and are still there, she doesn't need a scary open heart surgery or anything. They will go in and plug it with kind of what they use in a colonoscopy. If they have closed on their own, we will be most likely released from their care! So praying for good news!

   Swallow study. We have another swallow study later this month! Hoping Celina is still not silently aspirating on her honey thick liquids. It would be an even bigger plus if she were able to move down to nectar thick, or dare I say regular liquids? Our fingers are crossed on this one as well!

      Now. I may start to sound like a broken record, but I cant help it. I feel as if I could NEVER thanks everyone enough!! So I would like to Thank everyone once again for all your support and help in raising money for Celina's Cochlear!