Emotional Thursday

Unfortunately for Travis, his rapamycin level was low from last Friday's blood draw.  The study officials decided to increase Travis' dose from 1.5 to 1.7.  His dose now is 3x the dose when he started the study.  He's grown quite a bit since the start of the study and they start on the conservative side with dosing.  Travis will have a week for the new dose to "load" in his system and his next blood draw is when he has his MRI next week.  If that is in range, he'll have a repeat blood draw the next Friday.

T's now getting to the age where kids' jeans are more like regular jeans, not the elastic waist ones.  Being the youngest of 3 boys, he gets lots of hand-me-down clothes.  Although his brothers have worn some of the jeans (already stretched out), there are a few in his size that don't work due to the plexiform (tumor).  I'm not sure if regular jeans will be comfortable on T due to the plexiform and the hip asymmetry.  I guess one option would be to look for the husky size that have adjustable waist bands.  We can adjust the band for his hip that is regular size and the jeans may still be comfortable on his plexiform side.  While he doesn't realize his differences at this age, one day that will come.  My hope is that he'll be able to have as normal of a life as he can for as long as he can.  His brothers like to wear jeans and he does like to be like them also.  Maybe I'm making too much over a pair of jeans, but it's part of this emotional roller coaster journey.

As we draw near to Easter Sunday, I've been thinking where God has lead us over the past 6+ months.  He provided us with the tools to take Travis to meet and see the best doctors for T's specific NF issues.  We've had good weather for our solo trips to Salt Lake City and my mom to be there for the trip where we came back in the snow...all the work and hand of God.  He continues to do amazing work with our family and our family's move.  It is comforting to know His love for those on earth.