It's been a long time

In many ways, Quinn is doing very well. She got that newer longer J tube put in and we saw an IMMEDIATE turn around in her pain and discomfort. I am so very happy with that. If she had continued on for much longer in the amount of pain she was in, I'm not sure if I would have continued to let her suffer through feeds, so thank God for the small things! We are so grateful for her wonderful GI doc who, despite the protest from the head of the GI dept., went ahead and placed the new tube. I am forever grateful.

Quinn hasn't really gained any weight, but she hasn't really lost any either. We are still bouncing around at 30-35ml/hr. any more than that seems to cause pain and bloating. I know her motility is incredibly slow, but I have also learned to accept that this is just our normal. And eventually, there will probably be a new normal. Quinn constantly has all sorts of different colors coming out of her tube. If she isn't producing dark green bile, she's usually producing brown or reversing her milky vivonex formula into her stomach. In the past, I would have probably brought her in on numerous occasions due to the symptoms associated with the dark green and reverse motility, however, I know what the alternative is, and TPN is simply not an option for us right now. Plus, I don't want to be hounded over and over again about her need for a permanent line. I'm just not prepared for it and I don't know if I could say no under pressure. So far, both Quinn and I are coping well with our current normal. Since the new tube, her ketones have been nil, her blood sugars are much more stable, she seems slightly more alert and interactive and she just seems overall a little better.

Since I'm able to calm down a little on her GI issues, i can't help but focus on her issues with her right side. Yet again, we continue to see problems with her right sided weakness. I think that because she has been moving around more lately, it appears to be more prominent than it has in months. I've gotten very tired of seeing her fall multiple times, all due to her right leg simply giving out or just general weakness and it being very sluggish. She even gets frustrated. We've decided to entertain the idea of putting the AFO back on her right leg in hopes to both conserve energy and decrease her falls. She falls hard too and sometimes, she can't even break her fall with her hands. sometimes she just splats right on the ground from a standing position... no given warning. So orders have been put through for an evaluation and insurance approval. I am hoping to have the brace by the time school starts.

It's a short update. A lot has been going on, but I'll spare everyone the boring details and just post a ton of pictures! enjoy :)

In June, I met up with a couple of Southern California Mito Mamas and their children. Well, we kinda already knew them... Cheryl i've been friends with for almost 2 years and Kris i met at CHLA when we were there for our mito appointment. It was wonderful to see all our mito kids together. I am really looking forward to another meet up. in the future. 

  Oh yeah, Quinn also lost her first tooth!

 

This is from her somehow falling into the corner of the counter.... thankfully she missed her eye. 

  

This is 4th of July! so the picture right underneath, i just thought it was funny and had to post it. I was trying to take a pic of us three and it didn't work out well, but i got this funny face of Q. 

I also enrolled Quinn in swimming lessons. I can tell it's really hard for her, but she is not a quitter. She's amazing. 

And the one below is the most recent picture of my sweet girl. 

After literally giving up and thinking that she would never learn it, Quinn surprised me and my sister one day but all of a sudden swinging all by herself! I was so proud of her! this was taken yesterday!