Eli's neurologist called today. He and I spent almost 20 minutes on the phone. He simply discussed all of the test results (which by this point we already knew). He also discussed all of the amino acids and vitamin supplements that he wanted to start. He is upping his levocarnitine since he's been on that for months and his levels are still showing major deficiencies. He also discussed a sick plan that needs to be in place. Fast fluids, and using d10, also quick use of TPN as needed and all of those types of things. He agreed that these things can't wait on a mito kid like they can on a "normal" child. He is going to get a full care plan put together as well as get all of the meds situated. He also is sending out a referral to the endocrinologist as he's concerned about Eli's lack of growing and excessive sweating with sleep.
I'm so hoping we are finally moving in the right direction with all of these test results.
Eli also had an appt with his new optometrist today. He says there was just a slight shift, but not enough to change his script. We also discussed Eli's light sensitivities. He is going to change Eli's lenses over to the transitions lenses so he will have some protection from bright lights. He is going to see Eli every 3 months to keep a close eye on the health of the retina, cornea and optic nerve. He is also sending Eli to an opthamologist so they can keep a close eye on if surgery will be needed in the future, although it looks like glasses have been working well. They are getting glasses ordered so he will get his new ones in a few weeks!
Eli also had his in home speech today and did pretty well. She has brought him a signing DVD and wants to see how he responds to it. We've also started the process to get an IPAD. We like his new in home speech therapist and are excited to see how Eli progresses with her.
Tomorrow begins VBS for the older 4 and they are excited to go and meet new people!