I don't mean to keep getting behind on updates but so much is happening and it is taking everything to just keep getting thru it all, so getting on here to update sometimes just feels like to much.
Eli is not "doing as expected or understood". This seems to be pretty damn typical. We met with the dermatologist last week. He is covered in multiple types of rashes, lesions, cysts, and skin breakdowns from head to toe. It's on his scalp, eyes, nose, in his ears, over his face, down his chest, shoulders and back, his diaper area, palms of his hands, his legs and feet, basically everywhere. He has been followed by a derm for months because of all of his skin conditions but this is way past what we have ever seen and non of the meds were working anymore. The derm is stumped. He swapped out all of Eli's derm meds and added 4 new ones. He is wondering if it is a reaction to all of eli's medications (which at this point are around 25 different meds). He did scrapings and sent them in for cultures. He is going to work with Eli's doctor to figure out what is happening and what we can safely do about it.
Then last week we meet with Eli's PT and the bracing dept at CMH. We are changing Eli's AFO's again. He has outgrown his old AFO's and he is still not able to use the SMO's. They simply don't give him enough support. We were really hoping to be able to step down to the lower bracing but it's not happening. We are changing up his AFO's a bit to give him a bit of a spring and some extra movement. If he doesn't do well with that we will have to go back to a full AFO.
Then we met with Eli's eye doctor. It was again not good news, although we were expecting that. We had noticed changes at home. Eli was cutting corners, running into the edges of walls and furniture, refusing to look at things close up, and back to looking over his glasses again. His script has again changed, and because of this newest change his right eye has again stopped working entirely. He ordered new lenses and wants to get Eli re-used to them and then we will most likely have to go back to patching again. The lens for the right side is now so thick it doesn't fit all the way in the frame of his glasses anymore. He is going to continue following Eli closely and we have also chosen to get a 2nd opinion to make sure there isn't something we need to be doing differently. The vision specialist came out to our home and is working with us on activities to teach Eli tracking and to make uneven surfaces safer for him. We have run red tape over the floors at all of the steps and such to see if that helps him notice them.
Eli's feeding tube broke AGAIN. For the 5th time this year (each tube should last 3+ months). The silicone was literally eaten away and corroded. We went in and it was worse than realized. Again the balloon was full of bile and stomach contents and the tube was corroded. They have never seen this happen. They have sent his tube into the company for testing. Nobody knows if it is because of all of the medication we are putting thru the tube, or because of the bad placement in his stomach causing alot of extra acids, or both. This brought everyone around full circle to a conversation about his stoma placement. Eli got it when he was 2 months old and SOOOO tiny. It is now at the very bottom of his stomach right outside his intestines. This causes some issues, especially with venting and draining. His GI looked thru his past scans and xrays and they have decided that Eli needs to have a consult with the leading GI surgeon in our area. We will be meeting with him on the 5th of June. I'm terrified to even consider doing that surgery all over again. It was Eli's toughest surgery by far, to date. During the same conversation his GI doc has decided to again make changes to his miralax and also run a ton of tests. Eli is still having constant diarrhea and he is concerned about bleeding and ulcers in the small intestines, or possibly a bacteria or parasite.
Eli has also been struggling again with temp control issues and has ranged all the way up to 103, and is hanging out around 100. He has had some episodes of elevated respirations (up to 49) as well as some high heartrates. We are really having to stay on top of his fluids to try and keep him well hydrated so that doesn't all get out of control.
Lastly Eli met with his audiologist. He was fitted for new hearing aid molds and his aides were again adjusted. He is still struggling with the high tones and is still not hearing them, even with his aides on. He showed well in low tones with the aids so that is encouraging.
We have alot coming up in the next few weeks with Eli. He meets with the cardiologist this next week, his braces will be in soon, we will be meeting with the urologist, his complex doc, his GI doc, surgeon, and geneticist. We will hopefully be getting all of his test results back in as well. He is currently scheduled for surgery on the 19th of June, and we will see what the GI surgeon wants to do on his end as well.
The oldest 4 are busy winding down school. Emily, Jace, and Ben finish up on Monday and Ari finishes up on Tuesday. I will get full updates on them up next week after we get finally grades and reports and awards and such in!
Bob and I are here. Like I said the goal is just to get thru each day. It's a constant balancing act, refiguring Eli's needs minute by minute. I'm exhausted and feeling on the brink of tears or screaming often. I feel like there is always a slight knot in my chest, always wondering what next. We have ended up shutting so many people in the community temporarily out, because I feel like I have nothing to give. so many days I'm at a loss for encouraging words, because I'm right there in the trenches just like they are. Experiencing our own pain and agony, and attempting to make our way thru our own journey. I feel so selfish for not being there for everyone right now, but PLEASE know that you guys are in all our thoughts and we are sending hugs and thoughts and reading updates as often as possible.
More soon. Promise.