2nd infusion

[kellyOd]

Hey guys, it’s been a while since I have posted. A lot has happened in our personal life. As far as his treatment is going; it’s been well! Had the first infusion and the first few nights he had a pretty high fever which broke with Tylenol. Cold sweats and chills. And as the days went on, symptoms got better and went away! Now we are dealing with what looks like psoriasis on his scalp. Nothing intolerable. But definitely there. Slight rash on his elbows which looks like blisters. Also, comes and goes. We have the next infusion on his birthday, April 2nd. Hoping this one is similar, minimal side effects. I have seen and heard that the second infusion is where most have issues. For his birthday I got him tickets to a concert for his favorite band; which is on April 15th at the Warner Theatre in Washington DC! So hoping that after the infusion he will be well enough to go and have a great time! Other than that, no new pains. He’s been going to the gym and working out as if nothing has ever happened and everything is normal. I love it ❤️ I forget sometimes that this is truly what we are going through. But boy, I am so grateful. He’s hasn’t had any seizures since Christmas and that has been a true blessing. He has had some auras but nothing has come of it. So my next post will be an update from the next infusion, I hope everyone is well ❤️ my best wishes and prayers for all 😊🙏🏻

[missyrand Ambassador]

Kelly.

Super update and glad that there is a fun birthday outing to look forward to. Has the doc offered a topical cortisone prescription cream for the skin rash? It can help.

Glad you are both having some breathing room for the spring.

Peace,

missy

[kellyOd in reply to missyrand]

Hasn’t offered a prescription strength, but told us it is safe to use cortisone! Thanks we are excited for the concert to; trying to stay in the now ❤️

[strawberryjam]

So happy that Ryan is doing well! i loved when you said that sometimes you forget about the illness. That’s the best

[kellyOd in reply to strawberryjam]

Thanks so much! They are wonderful moments.. like I said to missy, trying to stay in the now ❤️ not to worry too much about the future.

[SGHSweethearts]

Kelly,

So excited to hear things are going well for Ryan, and you as well. These meds are amazing when they work. God Bless you both, and enJOY every day❤️🙏🏻

Michele

[HSsweetheart]

Kelly, great news! And wonderful that you show faith in his future by planning things you both look forward to. I'm going to apply for TSA precheck for us; clearly stating I expect him to get his money's worth by using it for the next 5 years.