Well, we were unexpectedly at the ER again last night. Poor little guy had 3 pukes, and you know what the drill is. 3 pukes and off we go to the ER.

It didn't start great. The doctor on that night we have had a mixed ride with. Sometimes its fine, and sometimes I have had to go to battle. I was already on edge. Then the resident came in hot, clearly panicked from how he looked (even though he didn't look that bad - sick and pukey, yes but not dangerous!) and began barking orders. Anyone who knows me can pretty much guess how that went. 

I informed her that no, we were not doing a cath unless the CMP showed that there was evidence for requesting one. No, we were not doing a swab. And before she orders fluids, she should probably listen to me so she doesn't order the wrong ones and increase our wait time for help, as I would refuse fluids that could cause him damage due to his mito dysfunction. I almost had a panic attack after this interaction. Jon encouraged me to breathe and calm down, and I just hit my knees in prayer.

Then the doctor on that night came in and I saw the Lord answer my prayers in an amazing way - HE WAS SO NICE. And accommodating. And kind - like he actually seemed like he was on our team. He told me I had done a good job and there is nothing I could have done to avoid this. I cry even as I write this b/c this was truly the Lord softening his heart toward us. I have NEVER had this kind of interaction with this particular doctor before. 

Some other answered prayers from this visit:
(1) Dear friends who offered to come over late at night to sit with Zane so we didn't have to wake him up. 

(2) Zeke's bicarb was still in good range, as was ALL OF HIS OTHER labs! Praise the Lord! It seems like Zeke's body is starting to heal. 

(3) The doctor let us decide if we wanted to be admitted or go home. He said he was confident that we knew what to do if Zeke needed intervention again but his labs didn't look like he needed to be admitted. He even said that his labs were so good that we don't have to panic if he pukes a couple more times.  We made it home safely. We are exhausted. But we are home. 

Please pray for sweet Zane. He had no idea what occurred last night and when he got up this morning and learned about it, he had such mixed emotions. Going in the middle of the night is very traumatic for him, but he also found himself feeling sad that he didn't go. I imagine this must be so challenging for him. He wants to be with us every step of the way, even when it feels hard and scary. This is a tricky situation to navigate as a parent. Today, I just shared with him that he still gets to be a kid, which means that he doesn't always have to do this hard stuff. Right now he is in training for those heavy lifts but for now, he doesn't always have to do them. He seemed satisfied with that.

Friday at Ability was amazing. He continues to make such excellent progress. In so many ways. Intentional use of his arms, continued lengthening of his hamstrings, better head control, sitting with support from the suit (and one of Tally's hands). He is having fun and loves it so much. 

We obviously are not going to Ability today, because we need to give him time to recoup. 

Some other items we need prayer for:
(1) Something deep and emotional has awakened in him. It is causing him to bite his lip more often again and be very emotional. Will you pray with us that this resolves and he doesn't have these deep fears causing him to panic?

(2) We are faced with a dilemma. We can clearly see that this stander is a necessity to lengthen Zeke's hamstrings. B/c of this, we can't wait 6-9 months while the insurance decides if it is medically necessary. It has been recommended that we work with a foundation. We have started the paperwork on this, but I am also aware we can only use this particular foundation 3 times over the course of Zeke's life. This feels scary b/c we don't know what is coming next. 

The stander will cost about $7000 so we are praying if we should begin fundraising aggressively to pay for this cash to get it as soon as he gets out of Ability? Or do we go with the foundation and utilize one of our 3 times? Or do we use a credit card to purchase this and then fight with the insurance companies for reimbursement? 

As you can see, there is much to consider, and we would really appreciate your prayers. We truly need wisdom from the Lord. He knows the future and what we might need, so we are asking that you pray with us to hear him clearly and confidently. 

I know that this is a heavy post, and I thank you for reading it all the way through and praying with us. It helps to share.