an MRI on friday

good morning.... just wanted to share that lauren has an MRI tomorrow at AI Dupont. she will have twilight sedation instead of the full general anethesia. this MRI is to look at her brain and spine to see if there have been changes to her myelin since starting the B12 injections. hoping that there is documented evidence in her MRI of the changes we are already seeing in her behaviors- primarily motor re-gains and continued cognitive learning. if so, i will ask for more B12 with the thinking that if a little is helping, perhaps more would be better?

will let you know when i know the results. also, still waiting on the results of her latest blood tests for metabolic and/or mitochrondrial disorders as well as the results of her muscle biopsy.

with love,
jen

Home, again

ok.... so we were home for a week then Lauren had trouble overnight this past Monday and by Tuesday morning i knew we had a problem. We headed out to the ER tuesday morning and after a horrible GI study (done w/out any pain meds) the dr's determined that there were no structural problems with the G-tube itself, rather a nasty infection which required 2 different antibiotics and a couple more nights in the hospital. Lauren is home now and her belly is doing great. although i am tempted dip her in bleach to prevent another infection we are hoping that as she finishes out her 5 days of antibiotics (around-the-clock, thank you) that she will be clear of further complications.

phew! hoping we can rest for a while.... and thank you for your care & concern for little lauren & her fam.

l,
jen

Lauren

Happy 2nd Birthday Lauren!

Thanks for everyone's calls and care for Lauren and her fam over the past week. We really appreciate everything- thank you!

She is doing really well with the feeding tube. She seems a bit more tired than usual, but otherwise is the same as before. Hoping now we can get her gaining... will keep you posted.

Love,
jen & fam

Lauren is home

Jennifer and Lauren came home today. Both are doing well, in need of rest, but doing well. Thank you for your prayers.

Surgery Update

Lauren's surgery was a success. She and Jennifer are getting settled into their room. Thank you for your prayers.

Tomorrow's surgery time

Lauren's arrival time is 12:40pm (yeah, not the crack of dawn like times in the past!!) and she'll be in surgery around 2:15pm (assuming no emergencies).

will keep u posted.

love,
jen & lauren

Getting ready

so we're back after a fantastic vacation on the beach and every day was just perfect. i reminded myself to stay in the moment and enjoy the sun, surf, and my family because all too soon we'd be back. so here we are, preparing to bring Lauren into surgery for a very "routine" procedure so let's hope her's is as well.

no new changes to share- we go in on tuesday and she'll stay a couple of nights to make sure it's in right, she can tolerate overnight feeds, and that she starts to heal properly.

thankfully my mom is going to be with lauren and me in the hospital and our aunt carol is coming to help with ethan and grace. we appreciate everyone's concern and prayers.

i will blog the outcome asap but no news is good news, right?! so if it's takes me a few days and you'd like an update you may call our home- Andy will be there in the evenings.

thanks for checking in w/us.
love,
jen