The last week has been.....scary, confusing, frustrating, maddening. All of the above. Ben has always been difficult. He is often grumpy, cross, moody and has a minimum threshold for when things don't go his way. We have made excuses for him. Oh, his ears hurt. He is two. He is one. He is 11 months. He is 6 months. Then we decided it was just him. When he is happy he is very happy and when he is not, well, look out. Many days we described him as "just not himself". He has been to the doctor for undiagnosed rashes, fevers and fatigue.
Over the last couple weeks he began complaining of his legs hurting. Then more specifically his feet. We thought it was growing pains. Then we thought his shoes were too small. The pain increased and became more frequent until he was unable to walk, he was in a great deal of pain and soon came the swelling and discoloration. The pain and swelling has come in periods. Periods that have no rhyme or reason. Sometimes it is when he is waking. Sometimes it comes when he is in the middle of playing. The severity fluctuates. When the symptoms are not present he is fine. Running, jumping, playing and creating general chaos. Then they come out of the blue and pull us back to fear and helplessness. Originally, our pediatrician suspected Juvenile Rheumatoid Arthritis. We began to find out about JRA. Everything fit for him. The unexplained rashes, fatigue, grumpiness and now the swollen and tender joints. The blood work did not support the diagnosis of JRA. We were relieved and concerned.
He has had xrays. We were hoping for a fracture. No fracture. The symtoms were in both feet. Tons of labs done. All normal. The symptoms move to his heel and hands. We consulted with a specialist and he requested additional labs. More waiting. More worrying. More frustration.
In addition, he has a ton of fluid in his ear. He was scheduled for surgery to put tubes in on Thursday but all doctors agree to hold off until we know what we are dealing with. In the meantime, he is limping with swollen joints and we have to talk loudly and directly to him in order for him to hear. He is the Curious Case of Benjamin Nodler and we are so sad.
6 comments:
WOW! What a lot to deal with. I have no words, just know I am praying for you and your son.
Debbie
I can't even imagine your fears, his pain and frustration. Think only good things don't let the bad ones in. I will do the same for you with fierce vigor!
I am so sorry that this is happening and wish I lived closer so I could help out. I hope that they figure out what is going on soon and treat it effectively. Breathe lots and know that you're in my thoughts and prayers.
OK, lets storm the heavens and get this resolved. I'm thinking of you, hang in there!
I'm so sorry for this burden you're facing. I know that we all have heavy loads to carry in one form or another, and they are heavy and they hurt. Just know how much you are loved and how much people are praying for you. You and Lori are incredibly strong women and I admire you. Good luck and remember to come up for air occasionally :)!
Well damn. That takes my breath. What next?
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