Home Sweet Home

my family

my family

As we pulled in the driveway and unloaded the┬ácar all I could think of was sleeping in my own bed. I lugged our bags up the steps, sent Joey up the stairlift, got him settled on the couch with a cartoon and then collapsed in my bed. A few hours later I feel like a new person. I would be looking forward to a good night’s sleep in my bed tonight but instead, I will be sleeping on a bus with a bunch of middle school kids. Wait, I should rephrase that. Instead, I will be losing my mind awake all night on a bus with a bunch of middle school kids.

Oh the things we do for our children! We are leaving tonight for Washington D.C. for the 8th grade trip. We will change in a gas station tomorrow and start touring the city immediately. I won’t see a hotel room until late Thursday night. Attention other 8th grade parents: What were we thinking when we signed up for this trip????? I guess we were thinking we wanted to have this time with our kids.

I’m sure you are all curious as to how Joey is doing. He’s home. He can walk. He’s dragging his leg a little but he can walk And it doesn’t hurt. I don’t know if it was the steroid injection, the physical therapy, the massages, the acupuncture or a combination of all but he can walk without pain and without assistance! We decided to do outpatient physical therapy instead of inpatient rehab. He will have acupuncture, pysical therapy and a massage on Thursday. I really think that we just overdid on it spring break. His body hadn’t done that much physical activity in a long time. Now I know to watch the amount of activity and to get him a massage or other treatment immediately if we do a lot. He’s also going to increase his exercises at home to try to strengthen the hip and leg.

I really don’t know why we had this setback (and neither do the doctors) but we do know that it’s NOT LCH and that’s what’s really important right now. Although I know with my network of friends and family and our doctors at Cincinnati Children’s Hospital that we could defeat Histio again, I really don’t want to take that battle on. And our fight with Histio has prepared us to deal with almost anything else without blinking an eye. We got this!

Joey loves seeing your comments so please leave words of encouragement. Oh and wish me luck on this bus trip!

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P.S. If you are on this trip with me, let’s avoid talking about Joey’s condition. I want to focus on Andi for the next few days. She deserves it!