For you O God have tested us. You have tried us as silver is tried. You brought us into the net; you laid a crushing burden on our backs. You let men ride over our heads; we went through fire and through water; yet you have brought us out to a place of abundance.
Psalm 65:10-12
I don't mean to only update the blog when the news to share isn't good news... April has been a good month. We have had some mentally and emotionally trying moments, but Noah has been feeling great and been able to get back into a more regular routine again.
Noah celebrated his 14th birthday this month! This is such a milestone! 80% of children born with Prune Belly Syndrome don't survive past 2 years and even though the past 5 months have been hard, we realize what a blessing they have been.
With every birthday, we measure the kids. This year it felt even more important to do that for Noah because the transplant is supposed to make him grow more quickly because things are working better than before. Noah has grown 5cm already since transplant!
Noah had been given a 1 month break from his regular bloodwork appointments. This was a very nice break! It's amazing how quickly time fills with other activities and how enjoyable that is.
We went back last week and were told that Noah's creatinine levels were higher again. To try to help lower them, we needed to do an overnight catheter. This news was met with as much excitement as you can imagine...
This was not fun (for Noah or us as parents) and caused a lot of emotions. The blessing that came out of it was that Noah started to voice the big questions that have been on his mind for a long time. Questions like 'Why can't I be like everyone else?', 'Why me?'. These are hard questions for a parent to hear and to answer and we continue to need much prayer and direction to navigate this new piece of Noah's journey.
Unfortunately, the overnight catheters did not help lower Noah's creatinine levels. On Wednesday morning, after repeat bloodwork, they were actually higher than last week. The doctors are stumped as to why this is happening and would really like to get some answers. To help get levels back where they should be, Noah needs another hospital admission for IV fluids and a catheter. This was devastating news, especially because Noah feels great! Although this makes a hospital stay a little bit easier, to be back has not been easy. Noah has handled this stay better than I have this time around.
It feels like the Lord truly is refining me and I don't feel able to handle anymore refining. I trust that there is a place of abundance on the horizon.
Rob brought Noah to be admitted and spent last night with him. This was a nice break for me and also allowed me to sleep through the night without having to wake Noah up for meds and the bathroom.
The doctor today said that Noah's levels have come down since being on fluid and with the catheter. His ultrasound showed that everything looks good. They plan to do repeat bloodwork in the morning and if levels have dropped again hopefully we can go home with the catheter in place and come back for repeat bloodwork next week.
We pray for a drop in creatinine levels and a short stay!
I will leave you with some pictures and a new song I have discovered:
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