Hi everyone! Well first thing, the blog is looking a little different. Its still not quite where I would like it to be but I wanted to change things up a little. My computer editing skills leave a lot to be desired so bare with me as I drag you along this learning curve with me! I was also thinking of trying out blogging once a week instead of every other? Let me know what you think!
So I am coming to you today with some exciting but a little scary news. Ethan and I have decided to take Ollie off of all medication! This is something that we have thought long and hard about, prayed about and struggled with. We went into the hospital with Ollie about mid September. Since then we noticed him complaining of joint pain, headaches and stomach aches all the time. He also seemed uncontrollable at times. When he would get upset instead of a slow progression to a meltdown it was 0 to 60 in two seconds. As parents we didn’t know what to think. Was this just another stage that we were entering into?
With Ollie’s medication, the immunosuppressant (Sirolimus), as well as the antibiotics he was on, it was hard for his doctors to control the levels of the Sirolimus in his system. We would go weekly to the lab to see where he was at. After 9 trips to the lab, they still had not figured out what the right dosage for him should be. 9 weeks of getting pokes and it was getting harder every time we went. I have never met a kid who would hold perfectly still for the poke but would scream bloody murder through the whole process. After Ollie’s last lab visit his Sirolimus levels were at a 16. The range for him is 6 to 8. This result kind of put both Ethan and I over the edge.
It has now been about two weeks since Ollie has been off of medication. We have noticed that he no longer complains of his legs hurting or his head. His belly is always hurting but there is no satisfying the ice cream monster that lives in his belly! But we can reason with him. His ability to problem solve and think outside of himself has drastically improved. It was almost as if he was living in a fog for the past 2 months and it has finally been lifted!
Now since we are going to Boston in a few weeks, we are very excited to see what they have to say about his reaction to Sirolimus or if it was truly a reaction or not. To Ethan and I, we have not completely ruled medication out for Ollie. As of right now we are giving his body a break. Letting everything make it’s way out of his system in the hopes that it resets itself. Eventually we might try again but for now we are loving having our sweet, intelligent baby boy back!
So please keep us in your prayers as we transition though this time. Also definitely pray for me as we finalize our travel plans for Boston. Not being in control of every thing is tough for this control freak! Anyway I hope all of your Thanksgiving celebrations were wonderful. We enjoyed spending time at both of our parents homes this year. How blessed we truly are! As you can see, we got our Christmas tree this week! Always so exciting! The boys helped with the ornaments this year….. it was quite the process but making memories is always important right?