Infusion No. 2 & New Updates

Heath Update #20

April 24 - April 30

Hi friends! Happy Monday!

It's been a few weeks since I've posted a new update, so I thought I'd pop on today and share what we've been up to...

I met with my kidney doctor on April 25th, and it was a pleasant visit. We caught up, and had a little conversation about dialysis... again. He said his nerves couldn't handle me being off of it much longer. He said he wanted me to have the surgery for the peritoneal cathether within the next 4-6 weeks. While I am not vehemently opposed to doing dialysis, I don't think it's time yet. J and I are both feel like we at least need to see some labs to see if the infusions are working at all. (I haven't had bloodwork done since April 19th, which was one week after the first dose).

The next day (April 26), I had my 2nd infusion. So far I haven't had any reactions at all!! WHAT A BLESSING!!!!! Since the infusion, I have noticed quite an increase in my energy level! I still run down quickly, but haven't required daily naps anymore - another answered prayer! If you know my kids, you know they are bundles of high energy, and it takes a lot to keep up with them. I am thankful to be able to keep up the last few weeks.

That weekend, our son had a baseball tournament in Asheville. That was a welcomed distraction and few days away. I had missed the last tournament because I was super sick and throwing up. All our baseball friends were so thoughtful and constantly checked on me to make sure I was okay. I got to share a bit about my diagnosis and how God's been working in my life through it all. I hope hearing what we've been through blessed them and encouraged them to lean on the Lord. On Saturday, we were at the ball field all day long. We played an early game, and then a late afternoon game. I did pretty great hanging in there with everyone, but I totally dozed off in my camping chair in the 2nd half of Game 2. Hah! Thankfully, my mom friends were super cool about it and giggled with me. We didn't win the tournament, but the boys played incredibly well, and have grown so much! We played three games, winning one, and losing two. We have amazing coaches and parents who really focus on integrity, sportsmanship, and skill. They teach our boys to win with grace and lose with grace, which is a quality that will come in handy later in life.

May 1 - May 7

This past week, I met with the dialysis catheter surgeon, and he was awesome! I've met many doctors over the years, especially when I worked at the hospital, and I was super impressed with his bedside manner. He really was thorough, cared about my health, and shared that he'd been researching my condition because he'd never heard of it. He said I was a perfect candidate and he didn't anticipate any issues with the surgery. He also told me that I didn't have to rush into this decision & whenever I was ready for the surgery to call him and he'd get me on the schedule - that he could get me in within a week. This doctor does surgeries four days per week, and is in the office one day a week. He even gave us his office number as well as his personal cell, and told us that he's happy to answer any questions we had.

I was supposed to see the hematologist last week for blood work, but that appointment got moved. We see him on Monday.

Then, our kiddos had their annual testing that we are required to do as homeschoolers. Not going to lie - I was super nervous. All the questions were running through my brain... Have I done a good job? Are they thriving? Have they been learning well? Am I the best teacher for them? All my fears were relieved when the report came back. Turns out, they tested exactly the way they did when they were in a traditional school! Little man scored high in math & sciences, while scoring average in language arts. Little lady scored high in language arts, while scoring average in math. She actually scored on a 7th grade level for spelling. Both kids were right on target and on grade-level. The test administrator had some great tips and shared additional resources with us for things to work on as we get to their next benchmarks. Getting over that hump really has just given me so much relief.

Since I got sick at the beginning of our school year, we got a slow start, so we are adding an extra month to our schedule. Typically, I would prefer to start in early August and finish in early May. However, we have seen such a benefit of being flexible with our schooling that we are going to take a few extra weeks to finish out our curriculum - without the pressure of a time constraint. We have review sheets that we plan to do throughout the summer. With a 3-month break, our kids get super bored after a few weeks, so our plan is to integrate those worksheets into our mornings throughout the summer. They also have chapter books that they will be working through as well.

Overall, this first year of homeschooling has been successful! We have seen firsthand SO MANY blessings that have come from it. Our family is so much more connected, our kids are thriving, and it's just been incredible for all of us!!!

We are currently in prayer over our decisions for next fall. My ardent desire is for us to continue on with homeschooling.

With the possibility of a transplant still on the table, we have arranged for an additional option if the need be. Some friends of ours are opening a new christian school in our area. My health will be the main deciding factor, but the cost is also a big factor for our family - it's double what we were paying for a christian education before. Even without hospital bills that cost would be a stretch for our budget so we are praying through what to do. Currently our kids are dual-enrolled for their co-op and the christian school. We hope to make a final decision within the next couple weeks once we see what my bloodwork results are. If you'd join us in prayer, that would be wonderful!

We are trusting the Lord and so thankful for His goodness and guidance in the middle of all that's been happening this year.

In Christ,

Kimberly

Specific Prayer Requests:

• The current infusions would put the AHUS into remission & kidney function would be regained.

• Positive lab results with creatinine trending DOWN on the next blood draw.

• Hematology appointment in 2 weeks

• My next infusion - June 21st

• Wisdom and clear direction for what to do this fall for the kids