The title of my post pretty much sums it all up. I'm sure most of you reading that immediately think money. If you did, you would be partially right. Money is tight. As most of you know Bob was laid off right after we moved here to KC. So obviously money has been very tight. I am helping out a friend who works for a moving company and doing a bit of packing. It's nice to get out a bit and meet new people, and help earn a touch of money to help out the family. It's not an actual job. It's something I've done 2 days and will only do once in a while when she has a packing job and I'm able to sneak away from Eli's very demanding schedule.
HOWEVER...money isn't our big issue. It's life and health and all of those things in between. We are exhausted. We are exhausted for us, for our kids, for our little man, and for all of the families out there that we support and love oh so deeply. It's a constant battle to keep our little man going, let alone the rest of our household. We are exhausted, all 7 of us.
My heart breaks for us, for my tiny man, for all of the parents and fellow tubies and mito kiddos, for all of the "normal" siblings out there, and for everyone else involved in our lives. The pain that our community faces on a minute by minute basis is overwhelming.
At our care plan meeting while Eli was inpatient, our team discussed sooo many things with us. They discussed that nothing was going to be a miracle cure, that we had to always remember that Eli's underlying diagnosis trumps all others and that "typical" cures for all of his side diagnosis's won't work like they normally would because of the mito. They reminded us like always that we have to settle for less, less in everything from medical treatments to quality of life. They talked about how they know we didn't pick this road, how hard it is to have a kiddo like Eli and how much of a daily struggle it is to keep him going. They acknowledged how much work it was, and offered up expanded nursing and more round the clock care. They told us how good of a job we were doing and they said they can only imagine the amount of time, work, and energy it takes to keep afloat with a kiddo like Eli. Currently we have chosen to turn down the increased nursing hours. We feel like we already have sooo many hours a month (345 hrs a month) and we aren't even using all of them. The doctors don't understand how hard it is to find good nurses. It's simply not worth it. But none of it changes the fact that we are freaking exhausted. No I'm not saying we are going to give up, not like that's even a choice in my opinion. We are simply saying we are worn out. It takes everything we have in us to get up each morning and do it all over again.
We currently have many friends struggling right now...when don't we. One of them is my nearest and dearest "little sister" who I have known since her mother was pregnant with her, and the other is one my best friends, the person I call when I feel like Eli's world is crashing down upon me, the one who gets it with no words needed. I feel as though I'm letting them down. I haven't been available, I haven't been supportive, I haven't checked in like I should, I haven't physically been there by their sides. I've been so wrapped up in simply keeping myself and my family moving in a forward going direction. I feel as though I have nothing left in me to give.
Some days it's a minute by minute kind of day. Today is one of those days. I stayed afloat today...
As I know everyone wants kiddo updates... :)
Emily~ Tonight was her final Shakespeare performance. She did great and said all of her lines beautifully. She had a great time over these last 3 weeks and learned alot!
Jace~ He's been a super busy man. He went swimming today and helped a friend nail down some 2 by 4's. He loves working with tools. Jace's new meds seem to be slowly working. His doctor doubled the one a few weeks ago, and they added a new one last week. We are hoping to really be making progress within the next few weeks.
Ben~ He's been doing decent. He's been stimming alot more lately, but hasn't had tooo many outburst. He also went swimming today, and seems to really enjoy the water. He's also one 1 new med, same as Jace, and will be getting his other med tweeked in the next few weeks.
Ari~ She's busy as always. She went swimming as well and got to water flowers and help out in the garden at a friends house today. She enjoys being outdoors and loves checking everything out. She also fed the birds and thought that was beyond amazing!
Eli~ He's still struggling. He is bloated and swollen to the point of uncomfortable. He's back to bright red and splotchy and sweating constantly. He ran low grades all day yesterday and has had a bit of a higher heart rate. His sugars have been good so that part is a plus. He has been alarming more at night lately, but we are thinking that's mostly due to the heat. His sedation MRI is coming up on Tuesday so we are nervous about the sedation and the results. The anesthesia team called today to go over his NPO orders, and I'm not fond of what this anesthesiologist has put into place. I will be talking to his doctor on Monday to see if we can get the orders changed around a bit.
I'm exhausted so I'm going to close for now. Going to try and watch some TV for a few and then it's off to bed to do it all again tomorrow.
I need a vacation...heck we need a vacation. All 7 of us (and Eli's nurse) need to just disappear into the wild blue yonder for a full week. hmmmm....now to just figure out which tree will be growing the money for this dream! :)