In the morning, I will be carefully taking Gavin to the Infusion lab at Akron Children’s Hospital for what will hopefully be his final IVIG Infusion at the hospital.
I’m really worried about this trip because of Gavin’s ongoing battle with his severe autonomic dysfunction. Because he’s become so unstable, we are transitioning him to home IVIG.
I’m praying that we can make it through this last trip without him crashing and having to go to the ER……again.
If you would be so kind as to keep Gavin in your thoughts and prayers this day, I would really, really appreciate it. I’m on edge tonight and having a hard time sleeping.
I just want to get through this infusion without to much trouble.
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justylou T21Advocate Lost_and_Tired Thoughts are with you. How are things today? Love Hayley x
Hey Rob, in the midst of this you really need to be practicing self-care. Don’t smack me. Please. But with as much as you expend of yourself, you’ve got to replenish that or you’re gonna run out.
@Jodi Brock @mythdebunker @Janet Meliti jaxxma Thank you all so much. It truly appreciate it.
RippDemUp Lost_and_Tired Awww..
Jack and I are sending Gavin, you and family all our happy, strong, positive thoughts today. We have an assessment re. further surgeries as well this week and totally understand the freak-out. Jack used to be fine with needles and transfusions and such but since his recent bout and the installation of a chemo port simply to get the stuff into him he really becomes resistant and anxious and then it all comes apart, so we are with you in spirit. Be strong like you always are, we are holding you in our hearts. Jo and Jack xoxox
ugh Im so sorry I know what it is like to have a child a boy with Autism and need other medical treatment as well as they have a syndrome known as Prunebelly Syndrome. They have and I have a very hard time with it they have been thru so much at just 11 yrs old. Alot of problems with his remaining kidney and alot of other issues. Prayers for you and Gavin. Ivs test blood draws ya they are the worse. I can relate as a parent. I am a single mom have lots of support though. Really feel for you.