Thursday, June 27, 2013

Family Meeting and more

Our first family meeting was yesterday. A family meeting is when I get to sit down with the whole team treating Nathaniel and hear what they have to say. Being brand new to this facility I was a little apprehensive about what this would be like. But I prayed lots, and was as ready as I could be for it.
 
 
After the meeting I took Nathaniel outside for some sun therapy and I took some quiet time in prayer and listening to music before I could even share with close family and friends. I plugged in my iPod, laid in the grass and found a patch of sky that didn't have anything "city" in it.... and PRAYED through all I had just heard.
 
 
It's not that I heard so much BAD news, it's just that it is all so overwhelming at times. And there is no one to talk it through with, so I had to talk it through with God.
 
So...
 
The overseeing doctor had a few thoughts, mostly centered around the fact that she feels that Nathaniel wasn't getting proper services and was under conditioned coming into this situation. That was difficult to come into. I work HARD to get him services, we do TONS of therapy at home daily, and I try very hard to stay on top of his care and stuff. So it was defeating to hear that she doesn't feel like his chore strength is what it should be, that he is in the wrong braces, and that his home care plan is not adequate. And that is what we started the meeting with. Joy.
 
The medical doctor was next. Nathaniel has been battling kidney issues, a UTI, and a migraine all on top of the recovery from the spinal surgery. So we had a lot to discuss team wide there, but his medical doctor is AMAZING at talking to me, so I wasn't surprised by anything she said. If anything her talking centered me again after the first report.
 
Next up Speech Therapist. The speech part of this treatment was adding sort of as a "I have time and he could use it" thing. Nathaniel hasn't had speech services in years. But her report  was another downer. She talked about his pragmatics, she talked about the lack of sequencing, she talked about the lack of social and conversational skills and she talked about the self centeredness of Nathaniel. All things I know, even some are things I have TRIED to get addressed, but haven't had much luck at. Then she started in on his current IEP and all the "necessary" things she saw missing there. Again, I went to the "wow, I thought I did this better" place. Sometimes I think these people need to stop and think about how they come across to families that are working so hard.
 
Next up OT (Occupational Therapy). Now Nathaniel gets OT at home once a month, so I am pretty up to date on what is "normal" there. Here they have been working with him on regaining self care skills, and how to do things he did before the surgery, but now has to do different ways, like pulling up his clothing or cathing or reaching things. Their report was pretty much in line with what I thought it should be and right what I have been seeing while we have been here. They also commented on how well mannered Nathaniel is with them. That made me laugh, as I always TRY to teach my children manners, but they tend to push my buttons so well!
 
Finally we got to the meat and bones of the report, PT (Physical Therapy) but the bummer is that Lucy, his fabulous therapist is on vacation this week, so we have had a lot of fill ins. This therapist was encouraging that she said he is gaining strength daily (which I can totally see) and we are all happier with the full AFOs and how he is walking in them. The discussion did come up about floor reactive AFOs and I am pretty set against those, I would far rather see him in a dynamic brace that is less cumbersome. This is a discussion I will continue to have before getting his final braces, but for now the new ones are working well. The PT report was very encouraging that they do feel like he is making great gains, and I feel like he is an amazing hard worker... so we agree on that!
 
Then FINALLY we got to talk about the important stuff. You know, the "when in the heck can we transition HOME" stuff. Now don't get me wrong, I KNOW this is where we are supposed to be, and this is God's plan for us right now, but DANG IT it is SO HARD to be here. So hard missing Audrey, so hard being so far from family and friends and so hard trying to EAT here, lol. I was both encouraged and discouraged with the pragmatics and time line laid out in front of me. Nathaniel will need PT 3 times per week at home, and will continue to need daily work. We will go home with a walker most likely, because as much as he is gaining, they don't expect full ambulation for many more weeks. And...
 
Drum Roll Please....
 
We have an expected discharge date of....
 
July 10th.
 
Yea, two more full weeks.
 
I think I can.....
I think I can.....
I think I can.....
I think I can.....
 
Yea... it is discouraging  in some ways. I am SO ready to be home NOW. But I am praying that it will help Nathaniel be that much more ready when we do go home. Please Lord, make it all worth it. And if you are praying for us, please pray I can keep my sanity here for 2 more weeks, that things with Audrey balance out, and that Nathaniel looses his "teenager" attitude that is pushing my buttons right now!
 
So that was yesterday....
Today I want to show you what a ROCK STAR this kid is!!
 
But technology is being EVIL to me!
The only place that my phone will upload the video to is Facebook, so I made it public and a going to post the link...Please, go watch it.
 
 
This ROCK STAR couldn't stand post surgery. Last week he did well to stand with assistance. Today is WALKING OUTSIDE of the therapy gym for the first time post surgery! Our God is SO GREAT!!!! Just thought you would all like a little sample of how your prayers are blessing us!
 
If for some reason you can't watch it, here are a few stills for you... but they are nothing like the video!
 
 
Is this kid amazing or what?
 
Yea, I think so too!
 
As always, thank you for taking this journey with us, we love you!
 

1 comments:

Lindy Laroche said...

love you mama! Can't wait to have you back.