The next few weeks are crazy. We have lots of appointment coming up for Addy. We have at least one a week for the next 6 weeks, and some weeks have two. Plus the kids have a dentist appt, and orthodontics appt and I have a neurology appt to try and get my migraines controlled.
The past few days, I just feel for Addy. She isn’t getting better. We aren’t waiting for a cure (There isn’t one, the team keeps reminding us at each appointment). We are literally waiting for the next setback, the next surgery, the next appt where a doctor throws us a curve ball. The last cardiology appointment was a huge blow and honestly I’m terrified of the upcoming appt. This appt we will repeat testing to see if her Aortic Root Dilation has gotten any larger or stayed the same. FINGERS and TOES CROSSED for stability. Any growth will be putting us in the fear of needing open heart surgery, as she has minimal room for growth on this enlargement. I am terrified of her needing open heart surgery. She is on activity restriction, which is still scary, but we are managing that carefully while trying to still let her be a normal kid and enjoy softball and PE / Recess at school. It’s a tough balance, and the line is so fine. Some days, it’s just terrifying. I try not to live in fear, but gosh….being a parent is terrifying and all this just gets to be a lot at times.
We always think we are ready for the next hospital stay, the next surgery, the next appointment, the next change of plans, but honestly there is no getting your mind/heart used to this life. The back and forth, the juggling, the living in two worlds (hospital life and home life). We are thankful for our friends and family that help us juggle the two worlds. The ones that come to appts with us when we need extra ears. The ones that take Ethen while we are at the hospital. The ones that check on the animals, or help us with food/gas/hotels/etc. It’s a lot, but we love our army! You all are amazing.
Anyway, I digressed. We have the following appts coming up: Cardiology, Infusion, Surgical follow up (to check on the tubes and her pectus), neurology EEG appt to check her seizure activity, Genetics, Sleep Neurologist, Psychiatrist, her reimmunization appt and more. Overall just a bunch! Ethen also has a few appts sprinkled in here.
Randy and I were discussing the other day, how Addy had the least amount of pain, when she had her ostomy. How we recently expressed to GI that her quality of life was better w/ her ostomy. GI was shocked to hear us say that, but in reality thats the truth. She had less pain and a better quality of life. Yes, she had rough days with Bag leaks (Trust me, those days were awful….they always ended in tears). But in reality her stomach pain was way more controlled. And no, we aren’t even considering at this point returning to an ostomy, we were always told to enjoy the days/months/years she gets without it, because at some point she will most likely end up w/ it again. We realize now, that it can actually be a game changer to your health and not the scary thing that most think. It gave our child her life back. After years of being in and out of the hospital for GI cleanouts, she was able to stay home and go to school and not have constant pain. Yes, we know the back to back surgeries triggered her autonomic dysfunction (we hate this) however, no one knew that was going to happen.
Yesterday, I restrung Addys beads of courage. She now easily has over 1400 beads. She has 8 (100 beads, or else it would look like even more). It’s emotional when you look at all the beads and really think about what each one means. Each one is a journey in its own.
We recently had a 504 MTG and it reminded us that this battle won’t be won. there is no end in sight for her disease (where missing school for medical appointments and hospital stays wont be constant). Our school made it clear they aren’t used to dealing with these kids whose battles will be on going. It’s making us as parents confused on our next steps. What do we advocate for next? I know we will figure it out, it’s just gonna take some time.