Calm Amongst the Chaos

Ok Oliver’s hearing test update. Not as I thought. Apparently he has some fluid behind his right ear, which seems to be at every Dr. apt we have ever been to, which is causing him not to hear as clearly in that ear. At one point during the hearing test there was a higher pitched quiet but not whisper sound to his right that I was sitting there dying on the inside wanting to yell don’t you hear that Oliver??!?! It wasn’t horrible, that was the only really noticeable spot he did not hear, it seems like his left ear makes up for a lot of the loss of the right ear but now we have to follow up with the hearing specialist/ENT on Tuesday and go from there. Sigh. I just swore they would have said he hears just fine lady …. but that is what I get for swearing.
Next up Andi Jane. The diagnosis is still sinking in. I’m not quick to do anything right now but let her be. We are going to watch what she eats (as much as we can) and try to take this diagnosis one step at a time.
And Lily. Poor seizing Lily. This AM while having her sit on the floor before I got her in her chair for school she fell back with full force, banged her head and had a huge tonic clonic. Good morning to you sweet girl…. yesterday I called neuro surgeon asking what the heck is going on and guess the freak what?! The nurse from the other clinic, the one I called and got an attitude from telling me she hadn’t yet dictated the notes and will send them when she can… NEVER SENT THEM! The nice lady I spoke with yesterday said there isn’t much they can do without the notes, in other words insurance hasn’t even been notified yet for approval. I let the lady know this isn’t breast implants we are waiting for this is something we are praying that will give our daughter a better quality of life, these seizures are at an all time high (well not as bad as time leading up to brain surgery, but an all time 2nd high) she was very nice and said she would call the other nurse and get a fire lit under her. Well since I can’t trust that is actually the case I will be on the phone yet again today. She also said our insurance is a quick one to deal with and this surgery should have been done weeks ago. It’s in your hands God…you have your reasons.. I know you do. You have to! Because if it weren’t I’d actually be even more pissed than I already am.
This just goes to prove NO ONE will care about your child like you. NO ONE! So be annoying as hell if you have to. If you want your child cared for this is the only way it will be done. Sigh.
I know the VNS will not be a cure all, but it has to help some. If not I am not sure what other road we will have to venture down. We can still try keto diet again but with a kid who only has a few life pleasures taking away one of their favorites is so tough to do. Sorry Lily no pudding, how about a butter pop?
She also has a follow up with Ortho next week and I am afraid scoliosis is getting worse. I don’t want to hear we need to brace her. Pray for that one too please. Did I even need to ask you to pray for the VNS surgery?
Oh we got her glasses ordered! Now someone just needs to go to the mall to pick them up. Cute, pink Barbie glasses with transition lens. I’ll post pictures when I take them. Along with Andi’s birthday festivities….
And Oliver will start survival swim soon. Something I have been deathly nervous about. I just am such a wimp with my baby. These classes are expensive and time consuming and I am just so nervous to watch my baby learn to swim this way, but I don’t want to spend all summer freaking out around the pool either. I need him able to get in the pool and feel comfortable. I’ll keep you all posted on all areas.
Please keep us in prayers.
XOXO