Wow, so many emotions and so much information. We are processing……
The bright side of things is that Allie continues to get stronger. This week she was finally able to itch her nose herself. We see her slowly move more and more naturally. In OT they are working on wrist strength, which will in turn help her be able to feed herself , and do other things in time related to self care. Her triceps are finally starting to show contractions which means hopefully down the road they will start to engage and work. While she still feels like she can “do nothing for herself”, we know as much as she is gaining- she will be able to do more down the road! She is continuing to feel more little things in her body, her nerves seem to be waking up, No muscular growth here but we are still only in month 2! She is also halfway through wearing her brace- once that is off we have to believe she will have some increases in mobility.
Another amazing thing on the home front- family and friends have our new room well underway! Walls, roof and I believe after today windows and door along with electrical will be complete. I call it the room that LOVE built. We are so grateful. A lot of bumps with that this week but we are blessed with so many people who care and jumped in to help.
The struggle this week I guess is some more realities have hit us. In our team meeting we were told she will most likely only have home PT for a couple weeks and then needs to have transportation to get to UVM . Transportation; we need to buy a van that can accommodate the electric chair. This chair is her biggest pet peeve- she wants to be in a manual chair but there are a few road blocks to that for now. We will be looking at vans on the way home in NH and I think Dana will be connecting with Lee Roy (Travis Roy’s dad) this week as he has reached out and has a wealth of information on this. I have to keep reminding her – this doesn’t mean forever!! We can reevaluate in a year and see where she is at but for now…Where there is the will there is a way!
Next struggle will be finding care for her while we work. While we will be primary caregivers for now, there is the reality of it all. There are a few dear people who can help with this and eventually once we can get her on Medicaid (probably sometime next year) she will be able to hire people to help with this. It is also going to take some time to figure out a routine for mornings and then for nighttime, as she will continue to need help turning every few hours. There are so many other details, Dr. appointments etc but for now our focus is getting the equipment she needs and working on the transportation so it is set up for when we get her home.
We continue to have so much hope for her as we see her week to week growth, she can’t always see it but trust me- I remind her!! We believe your love and prayers are what’s helping get us where we need to be so Thank you all! Dana and I have so little time with this current schedule , but see that we need to take a day here and there to help keep this bus/van (lol) moving down a long bumpy road.
Please keep her in your thoughts and prayers.
