Tomorrow marks another long week. Quinn's overall health seems to be so awesome the past two days! I wish all days were like this. These good days are the days when I look at her and think.... hmmm, i think she can come off her oxygen now, or how about no feeding tube since she seems to be tolerating more volume? or how about we start weaning her from her seizure medications? but, i know better. Quinn is probably only doing well for two reasons, A) this is the Mito Monster, playing games with me and trying to get the best of me and her. and B) she obviously needs the treatments we are doing and they are obviously working in her favor right now. and so, i have learned my lesson and Quinn is doing great right now, which is incredibly awesome.
we get to start school again tomorrow... omg! let's all cross fingers and hope that she gets to spend at least 3 days in school this week! She gets to go tomorrow, then she gets to go on tuesday if everything is well. But wednesday, we have a busy day as we will be traveling to the children's hospital for her UGI early in the morning and then she has her neurology appointment later that day. So it will be an all day event. If we get her prescription for her medical stroller, i'll probably try and see if any of the medical equipment stores down there will honor the script without having to go through PT. And Thursday, she has her surgeon to follow up with the results of the UGI and determine what the best route would be as far as surgery goes.
Though Quinn's motility seems to be pretty good the past two days, I know it's still sucky because every morning she wakes up with tons of formula still sitting in her tummy. She's on a high cal formula and she can only tolerate 30ml/hr right now. Seems to be more beneficial if i just keep her on it 24/7, but she loves to eat and she can't tolerate the formula plus tiny bits of food throughout the day so I just keep it on a 12 hour drip at night and then take it off her until late afternoon then she gets it for about 4 hours. So she's still getting a decent amount and she is actually gaining off it! So that's definitely a plus side considering that she was just skin and bones not too long ago. Another thing is that she must have Mirilax twice a day and generlac 3- four times a day just to get her to poop on her own once every couple days, plus we give her prune activia yogurt and lots of special probiotic foods daily and obviously her motility med every 6 hours. So... yeah... sucky motility.
With Quinn having so many good days, my daily thoughts remain heavy with a dear family that lives in Texas.
I wanted to encourage everyone to continue prayers to the Knight Family. Missy has been a long time online friend of mine and we have spent countless hours over the phone in Sammy's earlier years discussing our children and how similar they were, this was before we found out that Sammy had Mito. I have always looked to Missy for advise about Quinn and she has always extended a tremendous amount of information, support, love and hospitality, even during some of Sammy's most challenging days. I have never met them in person, but this family has always been near and dear to my heart and it sickens me to even imagine how much pain they must be in. Sammy and his family have touched so many lives and he was a brave mito warrior who will truly be missed.
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