Just another roller coaster kind of day.
We started our day off at New Lenox Lurie Children’s outpatient with OT therapy testing. I am so incredibly grateful that we have an outpatient facility so close to home. It was nice to be able to go only 10 minutes from the house. We spent about 2 hours with the OT testing Ellie. It made me so sad to watch Ellie struggle with small things that never gave her a hard time before. But we are just going to keep up her therapy at home consistently and try our best. We are now onto taping her face to help with bring back feeling and function. Ellie is very self conscious about this. The Doctors are very hopeful that she will regain function. It just is going to take time. It was very nice being close to home but we had to go downtown to Lurie Children’s anyhow for Ophthalmology appointment.
We went strait from the Outpatient Lurie Children’s downtown to the main hospital. Ellie saw three eye specialists and they also consulted with the Surgeon. The second specialist that saw Ellie two days ago started by saying that she met with several doctors/specialist and they feel that the best option is to glue Ellie's eye shut but this would be temporary until we get her into surgery to sew her eye shut. Then we informed her that Ellie will begin Chemotherapy in about three weeks. She then said when is the last time you ate or drank? She then said I am going to speak with the surgeon and try to get you in today. We need you to have surgery and have time to heal before chemotherapy starts. I feel like I got punched in the stomach. It was all moving so quickly my daughter was just here for an eye doctor appointment and we where leaving with her eye sewn shut. I thought to myself “What the the hell this is not fair. Isn’t she going through enough already”
The Doctor then said let me check your eye and see where we stand. She placed the eye drops that show the damage that has been done to the eye. She was super excited and surprised by how much Ellie’s eye had improved in two days. She said wow you are doing a fantastic job to me. “Yes, I am” I said while giggling and patting myself on the back. She then dressed in scrubs to go see the surgeon and show him the photos. She then came back and said we have discussed it and we think as long as you keep taping it shut and working on it we will continue to just tape it. I have spent so much time trying to perfect taping the eye. Ellie is miserable with her eye taped shut but she is handling it much better then I would. We have another checkup next Wednesday with the surgeon and we need to show improvement by then also or surgery will be still on the table. So for now we tape Ellie’s eye shut while putting medicine in her eye daily. We also have an appointment scheduled for the following Wednesday with a cornea specialist. I didn’t know they had so many eye specialists out there.
Ups and downs of the day have me exhausted. We got home at 3:45pm and The Meloni Family brought us dinner which really is greatly appreciated on a day like this where I am mentally and physically exhausted. I know that Wendy Pawlak said she is setting up a Food schedule for those that are interested starting Monday. I cannot tell you how nice it is not to think about dinner when I spend all day thinking of therapy, Doctor Appointments, and just getting Ellie healthy.
I am happy we do not have any Doctors appointments tomorrow and have a day off. I am going to have to revert back to a paper calendar because the doctor’s appointments are piling up and its easier for me to see it written on a calendar. I already have my Neurologist appointment and an OT appointment for Ellie scheduled on my Birthday. Ellie was really apologetic and I told her are you kidding adults don’t like their birthday and the world doesn’t stop on there birthdays. Also I wouldn’t want to spend the day with anyone else.
So to recap today ended up being a great day all and all.
A mother with a battle ahead of her.