Home Sweet Home!

We made it home finally!! Today is actually 1 week since we arrived home. I am very surprised how easy it has been to slip back into our "normal" routine. I think Julia is made of rubber because she has just bounced right back with no problem. We have about 4 more days of antibiotics left & then we are clear. We have not yet made any decisions about going back to continue on in the trial. The doctors are sorting through a few things & making a few changes to the protocol. In the meantime we are taking the approach of sitting back & watching how things play out before we make any rash decisions. The one thing I do know is it is so good to be home & God is still good!

2 steps forward & 1 step back

Julia had her surgery this morning to remove her bubble. The doctor said it went well & after a little vomiting from the anesthesia, she has recovered nicely. With any luck we will get released from the hospital tomorrow & get to go back to The Children's Inn. Hopefully we will get to go home on Tuesday. We certainly have a lot of soul searching to do from there. While it is definitely a possibility to place another Ommaya after she has healed we have to decide what we feel is best. Right now Julia is against the idea & I think if I had to choose right now I would be inclined to agree with her view. What we have been through to get here has simply been an emotionally taxing roller-coaster. I think a little time & distance will go a long way towards helping us see the big picture with more clarity. I have to give a word of praise to to all the doctors & staff up here caring for Julia. I hold everyone of them blameless in all of this. We knew coming into this that it is a trial & things can & will go wrong sometimes. They have done their very best & are giving Julia & me the very best care.

Dissapointment

What a disappointing day. We had such high hopes this morning that her labs would be good & we could go home tomorrow. Julia was even doing her go home dance. Instead Julia is scheduled for surgery tomorrow @ 8:30 to remove her  "bubble" (ommaya
reservoir) .She has another 14 days of antibiotics in store as well, but we will start them here & finish them @ home. Her white blood counts went up instead of down so that shows that the bacteria is still there & her body is trying to fight it. The doctors gave it their best shot @ clearing the bacteria without removing the ommaya but knew it was only about a 50% shot. Julia of course cried when Dr. Porter told her we couldn't go home yet. Hopefully we will go home this Tues. I"m not counting my chickens yet though, one day @ a time. That's how I'm making it through.  

Snow Storm :) & Hopefully Coming Home soon!!!

This is what we woke up to this morning. The snow came down almost all day. Already though it is melting & likely will  be gone by this time tomorrow. That's ok with us though because if all goes well Julia & I will be on a plane headed home this sat!!!! I don't want to count my blessings too early, but I can't wait to be home! Julia is still feeling great & her labs have finally been steadily heading in the right direction. She has finished all her antibiotics, now they are waiting until Fri to make sure they are out of her system so they can pull one last csf sample. As long as the gram stain & white blood count from that sample are good then we get to come home Sat. Praying & Hoping it's good :)

What a Weekend

The weekend flew by. Usually it's just Julia & I here but this weekend we had visitors, not once but twice! What a nice change. On Saturday my cousin Wendy & her husband Jason who live about 45 min away in Va, drove over & took us to lunch & we out with them for several hours before they brought us back to The Children's Inn & we showed them around a little. They also had a goody bag for Julia for her birthday filled with all kinds of stuff that made her smile :)  Then on  Sunday Ms. Cindy from home flew in to visit her daughter & son who live in Va. Cindy & her daughter Kim came & picked us up & took us to dinner @ her sons home. We had a lot of fun! During this visit we have met a 20 yr old young man named Chris & his parents. Like Julia, Chris is also fighting NPC. Tonight we went to dinner in a nearby town, Frederick @ Fosters Grille to support Dillon's Night with Chris & his mom. Every 1st Monday of the month this restaurant donates 30% of it's sales to Dillon's Fight For a Cure. Dillon is a local 10 year old boy also fighting NPC who became Julia's friend when we met him during our last visit to NIH. I was blown away by the support shown @ Foster's Grille, the place was packed!!  It was very nice getting out & away this weekend. Thanks to everyone that visited us & helped us get away!!!

Julia's Birthday

We took a trip to the Smithsonian Zoo @ Julia's request for her birthday. It was cold & Julia got tired before long so we only stayed about an hour & a half, but it was a lot of fun. She said her favorite animal was the Giant Panda. Earlier that morning her team @ NIH brought her a goodie bag full of birthday gifts that she loved & a cake. Then she got another goodie bag from The Children's Inn. Even though celebrating her birthday here instead of home hasn't been ideal I have to say a huge Thank You!! to everyone who has done their best to help put a smile on her face. She has received cards & packages for several days from friends & family both near & far, the farthest came from Alaska! She even received an angel from the Angels for Angels organization, thanks to Mrs. Stephanie :)