The Haps

Hi everyone,
It has been a while since I updated www.natliasfriends.blogspot.com so I thought I'd send out a personal note to our closest supporters. We love all of you and want you to know that without you all there what we are going through would be unbearable. I've really seen these last few weeks how blessed we have been by having you in our lives. God put another family going through a similar situation in our path. The difference...they don't have the advantages we have been given. They don't feel the love of their community and God's infinate wonder. It makes you stop, not just once or twice, but multiple times and thank God that we know his grace. This disease that Natalia has has made us open ourselves up to the world more then we would normally be comfortable with but in return we have been shown more love and support then we ever thought possible.

In August, we were given the news that her tumor was shrinking. The new chemo was working and we began to lower her dose of steriod. She began school and was so excited to be there learning with all of her friends. NOTE: We love Weldon Elementary, it's like wrapping up in your most comfy blanket when you visit. Natalia truely feels like she has a second home there. During her third week of school, she hit zero steriods for 3 days and we had to go to the ER. She was sleeping all day and had no strength at all. She got an IV dose of steriod and we began our latest chapter in the battle. Natalia's been having trouble with hydrocephelus or "water on the brain". She is now afraid to go to school. She spends a day or two at school and then goes to the ER because the balance between the steriods she takes to keep the swelling down and the hydrocephelus shifts. We have now undergone 3 CT scans and an MRI in the past month. First the really good news...the tumor has shrunk more since our last MRI at the end of August. The bad news...the hydrocephelus has gotten progressively worse. She may need to have a shunt put in to drain the fluid into her tummy. The Nuerosurgeon wants her to have a spinal tap on the 21st to see the amount of actual pressure her brain is under and to drain some of the fluid out to give her some temporary relief. He has looked over all her CTs and MRIs and this is the final step before he makes the decision to operate.
Hopefully soon, she will start Home/Hospital school. This should keep her mind busy. That is the only thing that hasn't been affected and she is getting bored. Our pediatrician is recommending at home physical therapy to get her left side into the game. The left side has quite a bit of strength but the tumor casues her to forget to use it. She also has a urinary track infection and a cold...life is not the greatest right now. On the 22nd she will have an ultrasound to check if her bladder is fully emptying. Our pediatrician is treating the cold aggressively due to her tumor. We are to keep her in and away from other kids until this passes. Another plug for JuicePlus+...her pediatrician was amazed by the fact that her blood has remained rock steady through everything. She chews 6-8 sweet tart like chewables a day and loves them. They are now like candy for both girls...God forbid I forget to sit their "fruit & veggie" next to their breakfast in the morning.
But through it all she has been awesome. She has a smile for everyone and a great attitude.

Much love to you all,
Roni