So Long Steroids

Caring Bridge - June 17, 2019:

Thanks so much for praying for us and supporting us this past week. Our car is back on the road running well, and we are so grateful for that. Praise God for his provision in so many ways for that circumstance.

We’re back to establishing a routine this week. The schedule is a little thinner over the course of a week than last time, but we’re trying to use all of the St. Jude resources at our disposal to get Asher all of the help we think he needs—things like extra physical therapy. The staff is amazing here; pray that God would continue to grant us wisdom in how we use the resources for Asher’s best treatment.

Finding a solution for Asher’s poor sleep quality continues to elude us. We’re to the point now where we will start with mild medications such as Benadryl. Pray that we can find something that works consistently.

Now that the shunt is in place, we will resume steroid reduction tomorrow. Based on past experiences, we always feel a little anxious when we do this. Pray that this decrease would succeed, and that we would trust God as we attempt to drop steroids entirely over the next couple of weeks.

The end of steroids will hopefully return our son to a normal appetite. If you’ve seen him, you know he’s packed on a few pounds in the last 4-5 months. Some of that is attributable to the steroids, a growth spurt, and water retention. The rest is simply raw weight gain. Today he saw a nutritionist, and will effectively be on a diet for some time in the future. Please pray that his appetite will decrease quickly, and that he can drop some weight. Doing so will help his breathing, his ability to hold himself up a little, and will generally make it easier for Leah and I to move him around, which has become significantly more difficult.

Thank you all for the many ways you love us.

Steroids, while quite miraculous for inflammation, are terrible in so many other ways. We weren’t sad to finally be able to remove them from his list of medications. At the time of his diagnosis, Asher was on the small side for his age, weighing somewhere in the mid-50s. At peak steroids, in was in the mid-80s. It was an astounding amount of weight-gain for a 8-9 year-old, and that just created so many other problems. Between that and getting all of the other clinical care he needed, we were hopeful for an increase in quality of life for as little or as long as we could get it.