Therapy and Night Nurses

Eli is doing so great at home. We are back to our home schedule, except for our new medicines, trach care and feedings are different but it's not too bad. Eli loves being around his brother and just having the freedom to do what he wants and go where he wants. I miss his voice though. His speech therapist is working with him to get use to a speaking valve, its called a passy-muir. We tried it a few times in the hospital but he hated it and would throw up and just freak out. Eli's therapist has slowly gotten him to wear it more and more. Today he wore it for 10 minutes. It was amazing. I think he has finally figured out that he can still breath with this thing on. Now we just have to try and get him to realize that he can talk with it on too. I can't wait to hear his sweet little voice again.

Eli's Passy-muir

Eli has 3 different therapist. He gets occupational therapy, speech therapy and physical therapy. Each therapist works on a different skill with him. I was telling his physical therapist the other day that it is hard to believe that he is almost 2 years old. He is still so small and with him not walking or talking he seems more like a 9 month old. It will be nice to see if he can really blossom now that he can sleep and get all the nutrition he needs. He will be getting his AFO's or leg braces on Thursday. I will post pictures and write about how all that goes. My hopes are that they will help him walk. If he is still having problems with the AFO's I think his physical therapist wants to get him a walker. I'm cool with what ever will help him get to the next level. Eli's occupational therapist works on all his hand eye coordination and fine motor skills. She is also working on getting him a belt to protect his g tube. He is so active with crawling and he loves to climb that his g tube site is starting to get irritated. I hope she gets the belt in soon. I really hate seeing him uncomfortable when there is an easy fix.

Eli hanging out outside

The 4 bags that have to go with us when we leave the house, Red emergency bag, suction machine, O2 meter and his feed bag. I feel like we are going on an overnight trip with all this stuff.

The night nurses have been an up hill battle. I have seriously thought about just not using a nurse or switching to a day time nurse. We have had about six visit us so far and we have really only liked one. One the nurses I caught sleeping. I called the company and let them know I didn't want her back out ever and they asked why. I told them she was sleeping and they suspended her and now there is like this huge investigation through the company and with some other agencies that represent disabled people. I guess they consider it neglect. I just really don't know what I want to do with the nursing situation right now. It really has me aggravated. Plus Eli is sleeping so well the nurse really doesn't have to do anything but give him his 1am medicine and make sure he doesn't get tangled in all the lines. I guess I have some serious decisions to make when it comes to his nurses.