Happy JDM news for Connor and us! ❤️

On April 12 Connor had his blood taken for a checkup and just two days later I got a wonderful email from Michelle that said that his blood levels were GREAT!

This truly is always very happy news for us but what came in the next email made us some of the happiest people in tne world.

Connor gets to tapper down his Methrotrexate! The last and final toxic drug he is taking for his JDM. If he stays steady and shows no muscle weakness or pain then the next nine weeks will determine if he is on his way in remission... This is HUGE! 

I am thrilled on so many levels including me not having to inject him anymore if the tapper is successful.

Below is the tapper schedule Michelle send me so keep is in your thoughts and fingers crossed it will go smoothly.

Let’s taper as follows:

 

--Decrease methotrexate to 0.6ml weekly for three weeks

--Decrease methotrexate to 0.4ml weekly for three weeks

--Repeat blood tests

--Decrease methotrexate to 0.2ml weekly for three weeks

--Discontinue methotrexate!!!!!!!!!!!!!!!!!!!!!!!

--Follow-up in 3 weeks and get labs at that time

Happy Mothers Day ❤️

❤️The greatest gift of all has and always will be love. Loving others and being loved.

I truly have been so lucky in my life! 

Walking Casts....

Needing to catch up with all the happened in a May....

On April 23 the boys got their so wanted walking casts! Now the process of getting the old casts off and the new casts on was quiet an experience as my two warriors (including me) found out only on that day that both had two pins in their ankles that needed to be removed. It was also a tad terrifying to see the actual surgery incisions but thanks to Sam who had the job to change the casts and pull the pins out it went fairly smoothly. 

Dr. Shaw told the boys he did not tell them about the pins so they would not worry about it and I admit I was glad I did not know either! 

Now for the two weeks after they were allowed to put weight in their feet but still assisted by crutches. After that, Connor and Aleander were told, they can walk without crutches. Ironically both are afraid to put weight on their feet even at the two week mark.

Right now we are facing a new battle, smaller but still keeps me in edge, as of this Saturday Alexander ran a fever of 103 and complaining of a sore throat and stuffy nose. I tried to isolate him and we got the fever down by Sunday afternoon but as of this am Connor is feeling yucky and telling me he has a sore throat. Do off to calling the doctor this am and hoping it is just a cold!