I Timothy 1:16a (The Message) states, "Here's a word you can take to heart and depend on: Jesus Christ came into the world to save sinners. I'm proof - Public Sinner Number One - of someone who could never have made it apart from sheer mercy."
I have often been asked, "How do you do it? Caring for all those kids and dealing with AJ's physical needs on a daily basis?" The answer, "I don't." (read on)
- Last week we had more than fifteen medical appointments.
- My kids attend seven different schools and most all of them have special education plans that we are in the middle of “tweaking”.
- AJ had his tube replacement, for which we are grateful that it went well. He still has some leakage but we are working on that.
- My husband is struggling with some of his own physical problems and has started the process of multiple medical appointments looking for an answer.
- AJ had a esophageal study done this week and we learned that his esophagus has a blockage, narrowing it to 3mm. This is not unusual in RDEB and we will be praying and watching to see when intervention is necessary. Eventually he will need a balloon dilatation where they intubate him and guide a deflated balloon into the area – inflate the balloon and open the area up. AJ does not have a good history of intubation so we are not excited about the prospect. The procedure also carries a risk of tearing his esophagus. For now, we will wait.
- We also received word that AJ’s iron level is dropping again. Kids with RDEB often lose the ability to absorb nutrients due to scarring in their intestines. We will increase his iron again, with the hopes that he can maintain his level a bit longer this time.
- Our son, RR, has had his own share of medical interventions this week. He has struggled for years with very unusual physical symptoms that no physician has ever found a cause for. This week his sodium was found to be extremely elevated which has resulted in a visit to a kidney specialist and tomorrow, an endocrinologist. In January, he will see a neurologist. After all of these visits and tests, we would be blessed to finally have a diagnosis and a plan for his care or treatment. Again, we will wait.