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Shands hospital was absolutely amazing. The pediatric infectious disease doctors teamed with his pediatric rheumatologist/immunologist and the nursing staff was the best we have ever experienced. I had enormous faith in their ability to provide the care that Parker needed. The child life specialist made a very special connection with Parker and even on the days he could not leave his room, she made it a point to bring activities and volunteers into his room. The love and support that we received from so many people (some strangers to Parker) showed him that there are people who were praying for him and cheering him on to improve and we are so incredibly thankful for that. Our last few days there were the hardest for me, although I could clearly see that Parker was slowly starting to improve. I realized that Parker’s disease progressed during this virus…even though I had the sense something was happening with his heart, they shared the news that there was swelling and fluid around his heart (pericardial effusion). I think I was handling things pretty good up until that moment…my heart ached for him so deeply it hurt. I listened to his doctor explain the complexities of systemic JA to the resident doctors and it all the sudden seemed REAL…it was quite a moment…I remember thinking, this doctor is incredible and she is impacting the minds of these newest doctors and a part of me was cheering her on for advocating and educating… and then another part of me was thinking this is MY child… and as much as I try to explain to some people how real this really is, they just don’t or can’t seem to see the enormity of it. I shared with the doc and the nurse practitioner that I wish they could explain sJA to “everyone” because it is so hard to explain. They could relate. They said that sometimes people say things without realizing what they are saying…even other medical professionals and they are always trying to educate. For some reason that gave me comfort.
Parker has had one infusion since coming home and we are slowly decreasing his steroids with success. Yes, he still is hurting, but his joints are not swelling and he seems to have fewer rashes and better energy. He still has these little bumps that we need checked but he is doing better. In fact, he started school Thursday. We LOVE his school! They allowed him to do a presentation to the entire 7th grade! We filmed it but the quality of the sound is horrible. We are going to re-film it this weekend and try to post it.
We did have his IEP meeting. He is now classified as “Other Health Impaired” and is on an altered scheduled. He has a shortened school day with 2 classes through virtual school. Virtual school starts Tuesday. He is also staying home on Wednesdays to give him a “down” day. The autmentive/alteranative technology specialist is coming soon to the school to evaluate him to see if there is a form of technology that could help him out since writing is incredibly hard for him now. And Hospital/Homebound is still our challenge. Will update later on that. I am choosing to focus on the positives tonight J
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In closing, with every birthday candle blow-out, cake cutting, shooting star, fallen eye last, dandelion blow….the wish is always the same: We wish for no more JA pain and a cure for all children! Prayers, love, hope, and healing hugs to each child who keeps on enduring with all the resilience their little bodies can muster up.
All that I can say is that I really feel so blessed to know you & your family. I really appreciate you in ways that I could never explain. I keep you all in my prayers at least once daily, often more. What a summer! Thanks for sharing your lives, struggles & challenges. Love you guys!!!!! Thank you so much for being in my life. I wish I could say it better. <3
ReplyDeleteHave you looked into alternative treatments? This is a great article:
ReplyDeletehttp://robbwolf.com/2011/08/22/emelias-story-she-is-my-walking-miracle/