That's how I feel right now. Stuck. Not moving forward...not going back. I'm in the present (which is where we all should be) but I'm so lost in it I'm not sure which way is up.
The past two months? A complete whirlwind. An emotional roller coaster. Can I please get off? I'm tired of riding.
To update those of you who are new: Go read the last post and then come back.
For those of you who are up to date: When I wrote the last post we were on our way up. On our way off the roller coaster. Tucker was feeling better and better each day. We were seeing real improvement... then BAM!
On Dec 3, 2011, Tucker wakes up and can't stand. He's crying in pain. His hips, knees and neck. It all hurts. He doesn't want us changing his diaper because to lift him hurts. I sit him on the couch and go get the phone in the other room and he falls off the couch because he can't move.
SCARY.
AGAIN.
After talking with my pediatrician (which is the BEST in the world!), we head to Children's ER where we talk with a Pediatric Rheumatologist. Is this still Kawasaki Disease or is it something more? No one knows. There are no answers. We start Steriods and we wait. The Doctor calls us on Monday. Tucker is no better so we start Naproxen. Again we wait. I've been "waiting" so much lately I ought to be on a ride in DisneyWorld by now!
Jump to today:
Tucker's middle finger on his right hand is bent most of the time. Strange. One finger. One hand. His left hand will periodically ball into a fist. No rhyme. No reason. He just can't move them or straighten them. His hands hurt. Occasionally, he limps. He doesn't complain...but his gait is definitely not normal. Please can somebody PLEASE help my baby boy?
So at this moment we are in the process of scheduling an MRI of his hand. We wait. Some more. We ought to be really good at this by now. I mean, I was diagnosed with Lupus 5 years ago. It took a very long time to figure things out. I know what to expect in this process of waiting but this is my son we are talking about! I can hurt and cry and be exhausted but not him. He's two. He's not supposed to know what it feels like to be in chronic pain. He's not supposed to wonder how he's going to wake up and what his day will be like. I know he's not thinking of that right now, but if this doesn't go away...he will one day. :( and that breaks my heart. That is not what I want for him.
But as I type, I'm reminded. It's not about what YOU want for him. It's about what I want for him.
Okay, Okay. I'm listening...and I'm thinking of Mary. How she must have hurt for her baby boy! Tears. True tears from deep within. Painful tears for the fear of your baby going through something so horrible that you have no control over. And that's the bottom line, I guess. I don't have any control. God allows us things that He knows we can handle. Things that allow His Glory to shine. I'm not seeing it yet. Just being honest. I'm in the middle of it and I'm just not seeing it. But I'm going to trust. Yes...even in the middle of it. I'm going to trust Him.
Please continue to pray for Tucker's healing; for his comfort and his peace. Please pray for Chris and I - that we will be patient in waiting. That we will keep the faith so that others may somehow be blessed by what we are going through.
I'll keep you posted. Probably when we are done "waiting".
You are so brave Tonya. I am Blessed to know you and walk this journey with you and your family. I pray for Gods healing over Tucker. I also will pray for rest, comfort, and continued Faith for you and Chris. From one strong woman to another I know it can be exhausting but its God who made us this way and its HIS strength in you that will overcome whatever life brings. I love you and just want you to know how thankful I am for you. Let me know if I can do anything to help. Bara
ReplyDeleteAs I write this I am saying it to myself as well. Concentrate on taking care of the known need and pray for the next step(s) through God's leadership. He may direct us around the situation by correcting the problem or He may provide the endurance needed to go through the next day(s). God is always there. We have to prove faithful to know Him more. Loving You. POPS
ReplyDeleteTonya, Hi my name is Melissa my sister Stacy told me to look at what you are going thru and I can somewhat relate. Megan my daughter woke up one morning and could not walk her knee was bigger than her head and her wrist was swollen. We went to a pediatric rhematoligist (after er visits and many regular dr visits) who after many test diagnosed her with polyarticular juvenile rheumatoid arthritis. The first doctor put megan on steroids and it didn't touch the pain or decrease the swelling It only made her eat and eat. I delt with that for 6mths when I finally decided to find a different rheumatoligist. I found the BEST guy ever. Within 10 mins of seeing Megan he knew what to do. He started her on Methotrexate injections which in 2 weeks had her walking again with finally less pain and in a mth the swelling was reduced. By the age of 4.5 she was able to come off the medicine and we have not had a reoccurance. It seems from your story that Tucker is experiencing more symtoms than Megan did (swollen lymph nodes) but it defiently seems very similar to what we went thru. I hope that you can find the little guy some releif because it is horrible to watch your child go thru so much pain and not know what to do about it. I hope this gave you a little information that there might be some answers out there for Tucker. Melissa
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