Tuesday, May 10, 2011

F is for frustrating...

Frustrating. This disease is frustrating. Come to think of it What disease isn't? Brennans eye appointment went great. By Gods grace his eyes are clear. CLEAR. NO inflammation. We see the opthamologist in 8 weeks and then every 3 months after that for well... Im thinking eternity. Thankfully they are nice, the office is a pleasant environment, and they have Veggie tales on T.V. I think we can handle that every 3 months, right?
On another note, as we have hope naproxen would work for Brennan I can say he has only gotten worse since we started it. The day we saw the eye doc Brennan woke up and couldnt walk by himself. He was clutching furniture, falling down, and shaking. I immediately got him flat on the couch with a  heating pad, could tell he had a low grade fever, and after a warm blanke and some love he fell back to sleep. By the time we left for teh appt. he was walking but badly. We shuffled throught he halls, and my heart ached as he tried to walk, and aske me if his Dr. K's office was in this building, too. He wanted to talk to Dr. K abotu his legs, and make sure that he knew his ankles were now hurting. I choked back tears and promised him I would call the nurse so Dr. K new he was feelign worse. We went to the store afterwards and he asked for a cart to sit in the back, with his legs straight, instead of a bench cart, becuase that hurts 'worser'. He actually stumbled and fell int eh parking lot. He said his legs just felt weak. His sweet little voice piped up and said, 'I jsut want to be normal again.'
'Normal?' I asked.
'Yeah, normal, like before i hurt. No one else has his. No on else in the family, or the neighborhood.' 
I told him he wasn't the only one, I told him he was normal, but I knew he was frustrated. I toild him I loved him, and that we would try our best to get his legs to feel better. And all the while inside I was crying. I was inadequate. I was wondering HOW. How to fix this. How to make it better. HOW. And I knew I didn't have the answers. I still don't. I have love, I have hope, I have prayer. I don't have answers.
jeanette the nurse called back and said Dr. K had squeezed him in at 10 am the next day. His stiffness and instability lasted until about 3 in the afternoon. And then he was runnign in the yard. Wobbly, but running, He slept all night. He woke up stiff, but was bounding down the steps. I saw him stretch his legs out ont he coffee table and as I was fixing breakfast he was counting. I looked over to see him bending his knees to chest each leg, 10 times each, and switching sides adn repeating. And I was amazed.
Amazed that a 6 year old can perservere through pain that would knock many adults flat. Amazed at a sweet child who when asked 'what are you doing?' Responded with an 'Exercising!" as in, 'well mom, whats it look like, im makign these legs do what they need to do!'
 And he we are, 13 hours later, and no closer to fixing my sons legs.
Dr. K ordered MRI's. He said the ankle swelling was 'minimal', and not in the major joint, therefore an injection was not possible. Minimal swelling certianly does not mean minimal pain. He said his legs muscles are very tight, and sent in PT.
We are now waiting for an MRI appointment. At that point we can look over the results and discuss steroid injections. And oral medications if the ankle is still swollen. I left with no more answers, the same medication regimen, that is obviously not working, and a child dissapointed that Dr. K did not fix it. He did order repeat labs, and some Muscle enzymes. He stated there are other diseases that also cause muscle inflammation that need to be ruled out. Brennan  has now missed 33 days of school this year. and as I was angry and frustrated and listening to Dr. K talk, and tell me this is a long journey, and a puzzle that takes time, and that we still don't have a sub type, and that we needed to rule out other diseases, i was trying to remind myself of a verse my dear friend had sent me.
Lamentations 3;33
for he does not willingly afflict or grieve the children of men'.
As I pondered this, and thought of my son, and how my God loves him more than I do, i began to read more, and came across this

 Lamentations 3:21-25
But this I call to mind and therefore I have hope. The steadfast love of the Lord never ceases, hismercies never come to an end; they are new every morning; great is yoru faithfulness. The Lord is my portion, says my soul, therefore I will hope in him. The Lord is good to those who wait in him.
and Numbers 23:19
God is not man, that he should lie, or a son of man, that he chould change his mind. Has he said, and will he not do it? Or has he spoken and will he not fulfill it?

And I know I can trust my Gods character. He has spoken.  He has spoken that his mercies are new every mornign, and my sweet son, bounding down the steps lived that today. He gave Brennan the strength today to walk, to finish his PT exercises with daddy, and to even, though wobbly and sore after, to play a soccer game tonight. He felt normal today. when asked his pain level he said he felt 'good' and 'fine' today, but when shown the face chart, he pointed to a 5 on a scale of 1-10.
Gods mercy was new today.
And therefore I will hope in HIm.

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