Saturday, August 27, 2011
Trying to make up some work hours today and feeling a bit paralyzed in working. So I just had to stop and write a moment. This week has been incredible. It began with having to take Michael for his scope and finding out that my grandma was in the ER and being admitted for her heart after a horribly pain-filled weekend for Parker. And we also received news that one of my sisters was being scoped too. Then on Tuesday we ended up in the ER for Parker. Thursday we did tests on Parker’s heart. I also found out on Thursday that my grant at work is being significantly cut. Friday Michael had blood work and scheduled a scan for next week and it was infusion day. Needless to say, Parker only made one period of school all week….And today, I woke to my other sister having to go to the ER. And yet as I try to be “productive” I cannot because I just need to reflect on the week.
Michael’s scope went well…quote from the doc, “well, good news…he doesn’t have cancer” so now we can focus on his kidney stones, yet again. But that we can handle. Grandma is doing better, meds are adjusted and I am happy to say she is home and in great spirits. My sister is still waiting on her scope results and my other sister is now home from the ER and also has a kidney stone. So we can now start a kidney stone club (2 sisters, my mom, my aunt, and my hubby…any other takers….).
Parker went to his pediatric rheumy yesterday and had his infusion. We got to spend some time with friends. Parker’s buddy Mark (same age) was there with is sister who was getting her infusion too. And we met another lovely girl and her mom. She is 14 with spondy JA and hasn’t met any other families yet. She now has met two J and we are surely going to get her connected. And we brought another huge batch of infusion treasure box items. Thanks again to everyone who donated. We still have enough here for about 2 more trips.
Parker’s heart is doing good and we are so very thankful! Even his pericardial effusion is better. What a relief! He is still having vasculitis and bruising. And the doc is most concerned about his GI issues and would like him to be seen by a pediatric GI doc. So that is our next stop. He does have some pleurisy too. Parker took all the news well. Even his doc commented on his strength. We also discussed his appointment with the physiatrist and she agrees with his recommendation for night splints on his wrists and ankles and a new wheelchair. We reviewed how PT went and that we need to start OT. And my goal prior to the next visit back is to get Parker a counselor. We also discussed this and she was really good with Parker and explained to him that all that he is going through would be hard even for an adult and that it might help to just talk about it with someone. Finally, the doc and Parker discussed that it was time to get a port. I have to say that I was not surprised…actually Parker prompted the conversation because he told her that every time he comes, it take 2-3 sticks to get the IV started due to scar tissue and rolling veins. So, we need to schedule getting that done too.
In the midst of all this craziness this week… I had begun discussing with Michael the idea of reducing my hours to 32 hours. We sat last weekend and I could not figure out how to get more than 35 hours in, in a week because of all the medical stuff and therapies. Not to mention that Parker is on an altered schedule with his IEP and Logan is very active with high school (and we want to totally support his involvement). So I began discussing this possibility with work and I can do this and maintain health insurance, so we are pretty sure that I will move to this soon. Because of this previous discussion of reducing my work hours, when I got the news that my grant was being cut 18% this seemed like a natural solution to that problem. Otherwise I would likely have to let someone on my staff go.
I know that bad stuff happens to good people…but good stuff does too. We have met amazing people through this whole JA experience. We have seen the good in people. We have received love and support. And we are watching our own children strengthen and bond even more while also reaching out to others, advocating, and teaching. Many children need this love and support. Please continue to reach out, advocate, and educate others about JA.