Plans change but fun continues!

An Alex medical update and a family fun update!

I feel like a broken record. I feel like each time I write what is going on it is just more of the same. Wait, delays, prayers requested, and how we are getting by. I guess that is the point but I do wish to mix it up a little bit and have a plan that we feel confident will happen. Sadly, we are in another place where we don’t have this confidence. So much has happened and yet here we are again, on the day we had thought we would be heading to Baltimore to officially begin surgery week but instead we are again being told there are more hurdles and that we need to wait. As of last week when we heard the insurance issues had been resolved we were quickly informed the hospital is not able to give us a new surgery date due to some other hurdles. We have not been able to determine what these hurdles are at this point but have been told it will likely be January or February before we will be given a new date. We have had a hard time with this news because we have waited so long already and made it over so many hurdles. We are eager to get this done for Alex and take this huge step toward recovery. She is eager to move on to this step as well. Please pray for peace and patience as we continue to wait. Pray that Alex would stay well and not get discouraged. Twice in the last month Alex has dealt with multi day high fevers without any other symptoms. Because of the medication she is on we have to take her in with fever and she has blood drawn and a Covid test done. During these fever days she feels bad, doesn’t want to get up and do anything, and just needs me to sit and hold her. Each time testing has found nothing, the fever breaks after a few days, and she bounces back.

During The last month she has also dealt with a lot of stomach pain that has not seemed to be related to the fevers because it has continued even when the fevers stop. Today we saw the doctor about all of this. They think the fevers are due to her being mildly immune suppressed and more sensitive to illness. The stomach issues aren’t clear yet but we have decided to take a one month break from her medication to see if this resolves her pain. If it does not she will see the GI specialist and if it does we will need to make a decision on what to do about her medication between now and surgery. We are hopeful this medication break will ease her discomfort. As always Alex was very brave during her blood draw for additional testing. She also had an abdominal X-ray to rule out blockages because of one of the areas she said there was pain. The blood work came back and her inflammation markers are elevated likely because of the last fever but we will be keeping an eye on things.

Of course any trip to Vanderbilt, especially one where pokes are necessary, means a treat for lunch. As always she wanted the grapes and cheese and a salad with chicken salad on top and ice cream for dessert. If that’s not a happy, ice cream face I don’t know what is!! We also enjoyed a walk, watched the fish, played with the train set, and chatted with Vandy team friends. It’s always my goal for her to have something positive to remember on days that can be really hard.

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Now for the family fun update.

This past weekend Brent set up a booth at Beau Cheval Farm in Wartrace during their fall festival. He had made beautiful wooden bowls, wind spinners, spoons, tops, Christmas tree ornaments, cutting boards, and other Items to sell. The kids and I went along to enjoy the activities and help out. The older four helped some friends who were working at the event and Alex, Boone, and I got to take a hay ride, pet and feed the animals, and eat some chocolate covered strawberries. It was a good day. We are planning to be there the next two or three weekends as well.

After the fall festival we had dinner with Grandma and Pap Pap and cousins and then on to trick or treating with these funny, creative, busy kids of ours. Ethan chose not to dress up for the first time but he still joined us for the walk around the neighborhood. It was good to be all together. It is still hard for us to believe we have a fifteen your old son. It is exciting that he is growing up and beginning to venture out on his own sometimes and I really cherish these times when he chooses to spend time with us and we have all six of the kids together.

LaRue was dressed as a circus director, Kyle and Paul both made warrior costumes, Alex was a poodle girl, and Boone was Mr. Incredible.

Another day we had some wood chopping to do. When Brent and the big kids were finished working we had a little family hike. This picture is one of my most favorite of Brent and Alex. Checking out the beautiful scenery from the safety of Daddy’s arms.

It was a beautiful day for a hike.

We appreciate you all continuing to pray for Alex, our family, the medical team we will be working with, and all the details moving forward.