Wednesday, February 28, 2018

This too shall pass...

The crazy season of 2018 appointments continues!

Our big win - Bladder surgery was a great success!! We’ve walked a fine line with urology for the last year, always feeling like the other shoe will drop at any time. But another successful surgery is fantastic news! Hopefully this one will hold things off for another six months or so!

The bad news - poor Eliza has been really struggling. She’s dealing with a lot of pain for the most part. Back pain, neck pain, and headaches, which as you can imagine, don’t bode well for a kiddo with her history. Her whole demeanor has changed dramatically since December and we are really struggling to keep her comfortable. Our physical therapists aren’t getting much out of her and her entire body just seems so much weaker. I’ve been in communication with our neurosurgery team about her slow decline over the past few months and we’ve set up an array of scans and appointments to see what’s going on.

Things got especially acute a few days ago, and we found ourselves in the Vanderbilt ER. I would have put all my dollars on the idea that our girl was having a shunt malfunction. So many of the signs were there! But after being at the hospital for a few hours, she magically perked up a bit. They ran all the typical tests to check things out (MRI, X-ray series of her shunt) and everything was perfect. UGH!! I can’t even begin to type how frustrating it is to deal with something so obvious, then have it slip away! I felt like a crazy person! But we agreed with neurosurgery to keep our upcoming appointments next week for the more intense testing that would find more definitive details. And in the meantime, we’ll keep an even closer eye on our girl.

Seeing someone so tiny, in so much pain, for such a long time, has been really hard. We are desperate for her to feel better. The good days are tolerable - grumpy and whiny and slow to get through. The bad days are torture - Eliza in constant tears and usually me holding her most of the day. It’s no way to function. A miserable toddler and chaos of all the mountains of individualized trips to Vanderbilt lately are wearing on us all.

I guess this is one of those complaint ridden, hard times updates. I try not to give off the air that things are difficult, but quite frankly, sometimes they just are! Isn’t that true of anyone’s life? Sometimes things are just hard. We are overwhelmed with appointments and travel time at the moment. Overwhelmed with how many specialists have big concerns with her health. Overwhelmed with home life being difficult with her being in this much pain. Overwhelmed with trying to keep up with the every day things on our calendar. Overwhelmed with how sadly unsupportive much of my family has been for Eliza and knowing what a difference involved family could make at a time like this.

So we just take a deep breath and acknowledge that this is a season. It’s frustrating to have her grandparents living nearby and not so much as ask about her or see my kiddos for months, but that also means we are all the more thankful for the few folks that we depend on constantly! Lifesavers! Weekly trips to Vanderbilt and hotel stays are wearing on us, but we see some of the best specialists in the WORLD! My gal is miserable and it’s breaking my heart, but I’m on top of this. We WILL figure it out. She’s a gem for hanging with it and like all things, this too shall pass.

So if I have a little less patience. If I say “no” to things more often. If I want to spoil Jake for being such a trooper. Just go with it. This too shall pass!

Crossing our fingers for some news next week!

1 comment:

  1. Hi, my name is Tamara Martins and I live in South Africa. I was told to terminate when i was 16weeks because my daughter had hydrocephalaus and severe spina bifida and was told she would be a vegetable. I'm a child of God and I believe in miracles.She has defied all odds and is making so much progress. I just read Eliza' s story although its been 3 years now. She reminds me of my daughter's determination to move and be active. I have made so many contraptions to assist my daughter to stand and move about. She is 1year and 2months...but your story has made me realise that I have to get the professionals to do it if not i could hurt her permanently. So saving up money to see a specialist and get her the brace and the gait walker. Thank you for sharing!