Today Eli was simply supposed to have an appt with his new nutritionist. In true Eli fashion that isn't how the day went. We got there and waited for over 45 minutes. UGGGGH. Then the ARNP that works closely with Eli's complex kiddos doc came in. She had seen the massive amount of weight gain that he has had and was concerned. He is gaining over 46grams a day and he's supposed to gain 6grams a day. That a LOT. She is concerned about his kidneys no longer working properly to keep all of this flushed. Especially since he isn't peeing near as much and not nearly as often lately. We also voiced our concern over his legs and the tightness on the left side and the lack of movement on the right side. She did some range of motion and basic movements. She was as well concerned. The left side has a constricture (sp?) and is so tight you can hardly bring it up at all. The right side is dropping so bad that it's just floppy. His legs are rotating at the knee to the point you can almost completely turn it around. The hips are slightly stable at the front point and when she would continue the rotation they are becoming unstable and completely laying flat out. This is obviously not good and NOT what the body is supposed to do. This has all happened in the last week or so, well the advancement of it. He's always had the foot drop and some of those things but nothing like this. The NP was concerned that it's a neurological issue and called his neurologist immediately. She's also concerned that the bloating and swelling and fluid retention are being caused by the new HGH (human growth hormone) and immediately called the endocrinologist. The nutritionist is changing up his formula a bit, trying to lower the pedialyte as she is concerned that it's going to cause some issues with his electrolytes and sodium levels. His blood sugar levels have already been running a bit higher.
We ended up being there most of the day. We left with alot of information and alot of new emergency appts scheduled. Eli will be meeting with his neurologist, endocrinologist, a brand new nephrologist and getting ultrasounds of his kidneys.
I will update more as we know more. Right now we are AGAIN trying to sort out all of this information and process what's happening. We are so exhausted from taking so many steps backwards. Today is another one of those days that I HATE this fucking progressive disease that is taking over my little mans body.