Thursday, December 19, 2013

Hoping for a better 2014 than 2013 was!

Well the end of 2013 just hasn't been a good year for us!  We are still trying to figure out Jackson's brain issues.  We have gotten a 2nd and 3rd opinion and all but one doctor said it is not from the methotrexate and said it isn't even calcification but plague in the arteries in the brain.  They suspect it might be in the heart area too.  He is scheduled to have a CT scan and angiogram with contrast Monday afternoon in Minneapolis.  The new ped neurologist was very good and promised we would get to bottom of this.  He is going to be doing a bunch or tests.  He is looking for heart problems, metabolic disorder or maybe another autoimmune disorder.  Still all very depressing and worrisome.  And Jackson was hit with another bad headache that lasted for a few days with some vomiting and kept him at night.  It is so hard to watch your child endure such pain and be so helpless you can't do anything to take the pain away.  I am just so fed up with his suffering I can hardly stand it anymore! 
I have had my own set of problems on top of all this.  For a few months now I have been having on and off joint pain that comes and goes throughout my body.  Prior to that in the summer I had some swollen lymph nodes in my groin and a strange rash on my leg.  Well in beginning of November my left knee got sore and a little swollen.  I wore a knee brace for a while and it get better.  But the day after Thanksgiving it got really swollen and sore again.  I thought I probably injured it at some point so started wearing my knee brace again.  About a week and half ago my whole left leg swelled up from my knee to my calf to my ankle to my foot and toes.  You couldn't even tell I had a ankle.  I couldn't bear much weight on that leg.  So I finally decided it was time to see a doctor.  They did some blood work and my d dimer (blood clotting) was elevated so they sent me straight to er for a ultrasound thinking I had a blood clot.  Ultrasound came back good, no blood clot thank god!  My lyme disease test came back positive so they thought this was the cause of my leg pain and swelling.  They sent it to Rochester for further testing because I had lyme 10 years ago.  That test showed positive for new infection not my old lyme from 10 years ago.  So I was diagnosed with late stage lyme disease.  Doctor said I have probably had it for quite a few months for it to get this bad.  They gave me a splint to wear and took me off work until it got better.  They also referred me to orthopedics.  I saw orthopedics last Friday and they wanted to drain some of the fluid out since there was so much and do some testing on it.  The first try didn't go so well.  He couldn't get the needle in the joint so he kept having to jam it in there and oh it hurt so bad.  So they finally gave up and sent me to radiology so the doctor could see the needle through the ultrasound while getting it in knee joint.  They took 3 very colorful tubes of fluid, one of which was pretty bloody.  This week the pain is getting better and swelling has gone down quite a bit in my ankle and foot but still quite a bit of swelling in my knee and calf.  I am getting around much better this week but after a hour on my feet I can feel I need to sit.  So hopefully it continues to improve from here and the test results on the fluid don't show anything other than the lymes.  I guess this will teach me to wait so long before I see a doctor when I am not feeling well!
Jackson had a infusion this past Monday and we went early and brought gifts for him to hand out to the other sick kids in the infusion center.  He was great and so happy to do it!  After being there so many times and seeing all these sick kids some with cancer, some with same disease as Jackson, blood diseases, kidney diaylis etc.  I felt the urge to do something for all these poor babies suffering!  We also brought gifts for the nurse.  They are awesome people to work with sick kids every single day and show such compassion!  It was a great day and I am so happy we could do something to give back for Christmas.  We ran into quite bad winter weather there and back but made it.  Its only been a few days since the infusion but enough for his body to already get sick and he has a ear infection but finally feeling better today.  So hopefully we can all be well for Christmas.
Hope you all have a very merry and blessed Christmas!!!!!!

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