How to tell Natalia feels better...she wants to stand up for long periods...she wants to exercise her legs...she's joking with everyone...the sisters are argueing as only sisters can. If she is up to it after the long drive Tinkerbell and Ariel will be attending our church's Halloween carnival. Thank you all for your prayers we can see the evidence right before eyes.
Love to you all,
Roni
Friday, October 31, 2008
Thursday, October 30, 2008
The Surgery
Good morning all,
It's bright and early Thursday morning and I can no longer sleep. Therefore, I've started laundry at Family House and am updating you all. It has been an exhausting couple of days. Natalia's surgery happened on Tuesday and went off without a hitch. She has 2 small incisions and a couple of bruises from running the cathiter(?) from her head to her tummy. She is beginning to move about the bed with more ease and we are beginning to see improvement with her overall movement. She gets a little woozy when you move the bed up and down so there has been no playing with it this trip to the hospital.
The really good news is that they should release her today. The doctors are doing their evaluation around 9am and hopefully after that off we go. We will stay one more night at Family House that way we are close to the hospital for one more night...just in case. This will also give us time to do all the sheets and towels laundry...or I should say gives me the chance. Edgar will be sound asleep. He has spent the last 2 nights at the hospital. He tried to get some sleep yesterday afternoon but...
Sophia has not done too well this trip. She has yelled, screamed, cried, thrown raving tantrums and generally been a nightmare. Morning tantrums I'm used to (Natalia and I are morning people, Sophia and Edgar are not) fact of life get used to it. Yesterday afternoon went to new heights...Edgar brought Sophia back to Family House for some R&R and let the fun begin. She left the room when he was falling asleep, played dress up in our clothes, played in Moma's makeup and pounded on the bathroom door while he was showering yelling that he had been in there to long. Did I mention she has taked mouthiness to new levels? I should also mention that she is her cutest and sweetest in front of everyone else. Papa looked like he had been throught the ringer when they got back last night. When Sophia and I headed back here about 8:30pm I asked her what was up, she might be a little wild but nothing like she has been this trip. She told me she was jealous. Sissy was getting everyone's attention and there was nothing left for her. While my heart was crushed, I had to explain to her that no matter what this type of behavior could not go on. She agreed after my hand was applied to her naked butt after another incident and I had my little helper back. The little stinker knows she can get away with more in front of people and does not fear most reprisals.
Anyway...we should be home in Fresno by Halloween night/afternoon.
Love to you all,
Roni
It's bright and early Thursday morning and I can no longer sleep. Therefore, I've started laundry at Family House and am updating you all. It has been an exhausting couple of days. Natalia's surgery happened on Tuesday and went off without a hitch. She has 2 small incisions and a couple of bruises from running the cathiter(?) from her head to her tummy. She is beginning to move about the bed with more ease and we are beginning to see improvement with her overall movement. She gets a little woozy when you move the bed up and down so there has been no playing with it this trip to the hospital.
The really good news is that they should release her today. The doctors are doing their evaluation around 9am and hopefully after that off we go. We will stay one more night at Family House that way we are close to the hospital for one more night...just in case. This will also give us time to do all the sheets and towels laundry...or I should say gives me the chance. Edgar will be sound asleep. He has spent the last 2 nights at the hospital. He tried to get some sleep yesterday afternoon but...
Sophia has not done too well this trip. She has yelled, screamed, cried, thrown raving tantrums and generally been a nightmare. Morning tantrums I'm used to (Natalia and I are morning people, Sophia and Edgar are not) fact of life get used to it. Yesterday afternoon went to new heights...Edgar brought Sophia back to Family House for some R&R and let the fun begin. She left the room when he was falling asleep, played dress up in our clothes, played in Moma's makeup and pounded on the bathroom door while he was showering yelling that he had been in there to long. Did I mention she has taked mouthiness to new levels? I should also mention that she is her cutest and sweetest in front of everyone else. Papa looked like he had been throught the ringer when they got back last night. When Sophia and I headed back here about 8:30pm I asked her what was up, she might be a little wild but nothing like she has been this trip. She told me she was jealous. Sissy was getting everyone's attention and there was nothing left for her. While my heart was crushed, I had to explain to her that no matter what this type of behavior could not go on. She agreed after my hand was applied to her naked butt after another incident and I had my little helper back. The little stinker knows she can get away with more in front of people and does not fear most reprisals.
Anyway...we should be home in Fresno by Halloween night/afternoon.
Love to you all,
Roni
Monday, October 27, 2008
Surgery Tomorrow
Hi all,
Tomorrow is the day. Natalia will go into surgery to insert her shunt at 10:30am...of course we have to be there by 8:30am. Thank God! Dr Auguste will preform the surgery. We met with him today and he explained that unlike a normal brain that floats in its moving stream of water, Natalia's has clogged up and now her brain is becoming saturated, along with the added pressure. This is part of what is causing her problems right now. The surgery should take approx 2 hours and she will have 2 incisions, one on her head and the other at her tummy. We can't wait, it said if all goes well she will begin to fell the effects within a few hours.
The shunt itself will be programable. They are going to start with a generic "normal brain" setting but if she needs to have more fluid come out they can adjust the shunt valve with magnets. The tubing will run from the shunt to behind the ear and down to her tummy just under the skin...once again Thank God...does everyone remember how fun the feeding tubes were for us. I had visions of it being outside and looping down so she would be pulling it out of her brain...the nightmares we think about.
She is looking forward to having it done...not only to feel better but because she gets cool shaped bandage dressing and the beds move up and down.
Love to you all,
Roni
Tomorrow is the day. Natalia will go into surgery to insert her shunt at 10:30am...of course we have to be there by 8:30am. Thank God! Dr Auguste will preform the surgery. We met with him today and he explained that unlike a normal brain that floats in its moving stream of water, Natalia's has clogged up and now her brain is becoming saturated, along with the added pressure. This is part of what is causing her problems right now. The surgery should take approx 2 hours and she will have 2 incisions, one on her head and the other at her tummy. We can't wait, it said if all goes well she will begin to fell the effects within a few hours.
The shunt itself will be programable. They are going to start with a generic "normal brain" setting but if she needs to have more fluid come out they can adjust the shunt valve with magnets. The tubing will run from the shunt to behind the ear and down to her tummy just under the skin...once again Thank God...does everyone remember how fun the feeding tubes were for us. I had visions of it being outside and looping down so she would be pulling it out of her brain...the nightmares we think about.
She is looking forward to having it done...not only to feel better but because she gets cool shaped bandage dressing and the beds move up and down.
Love to you all,
Roni
Saturday, October 25, 2008
SOPHIA...Sophia...sophia
We get a lot of questions about how our youngest daughter is doing through all of this. Therefore, today's blog is dedicated to Sophia. She is little sister, best friend and partner in crime. She is a four year old going on fifteen. She is our "Pia". She does not miss a step. For instance, Pia on a typical day like last Monday...I had to go to Turlock for a managers meeting so Edgar was in charge of getting Natalia to Valley Childrens to do her blood work and Sophia to the pediatricans off ice for her flu shot. Pia held Natalia's hand through her blood work and then Natalia held her hand (Pia shares Edgar's fear of needles) and told her how to breath during Pia's shot. On their way home, Edgar received a phone call and of course he answered it and spoke on his cell phone while driving. When they got home, Pia got her pen and spiral notebook, wrote a few letters on it, ripped it out and gave it to Edgar. When he asked what it was the answer surprised him..."It's a ticket for talking on the phone while driving. It's against the law and you shouldn't be doing it."
She also wants things to "go back to normal." She wants her old house with her Winnie the Pooh curtains. She wants Momma & Papa's old bed and most of all she wants sissy to be able to play with her like she did before. She is a tough little cookie that does not want to be separated from us at all. If she is going to school..."who is picking me up?" If she goes off with her godmother..."when am I coming back?" She remembers being left when we were first going to UCSF to find out just what was the matter with Natalia and she is making sure that it does not happen again.
Sophia has 2 speeds in life...full throtle and complete stop. The closer she gets to complete stop the faster she moves. She can be talking to you one moment and the be passed out the next. She believes that her big sister has to try something before she will do it. While her sister is the general, Pia is a tactical master and nothing stops her once her mind is made up. She gives determination meaning. She is also completely adorable and uses it to her full advantage. Most people melt with just one look into those liquid brown eyes.
Simply put...she is Sophia.
Love to you all,
Roni
Wednesday, October 22, 2008
Made it Home
Hey all,
Just a quick note before I pass out from travel and stress. The results of the lumbar puncture were that Natalia's brain pressure was very high. They decided that, yes, she does need a shunt and they did not give her the Avastin part of her chemo because it prevents healing. That gives them a window to do the surgery. Thank God, we got a phone call when we got home this afternoon that they want to try to do the surgery next Tuesday or Wednesday depending on Dr Auguste's schedule. So, please pray that this surgery goes on as planned and goes well. Several people have told that we should see a difference in her within a short period of time.
Love to you all,
Roni
Just a quick note before I pass out from travel and stress. The results of the lumbar puncture were that Natalia's brain pressure was very high. They decided that, yes, she does need a shunt and they did not give her the Avastin part of her chemo because it prevents healing. That gives them a window to do the surgery. Thank God, we got a phone call when we got home this afternoon that they want to try to do the surgery next Tuesday or Wednesday depending on Dr Auguste's schedule. So, please pray that this surgery goes on as planned and goes well. Several people have told that we should see a difference in her within a short period of time.
Love to you all,
Roni
Saturday, October 18, 2008
What's going on?
Hello All,
Natalia is still trying to get over her cold. She starts off good in the morning but by 11am is wheezing and coughing again. As long as she gets a nap in the afternoon, she is usually ok in the early evening. She has a tough time trying to cough so it is hard to get the flem out of her lungs. Edgar and I spent a sleepless Wednesday night as she tried to get it all out. We kept in contact with UCSF (tells you how bad it was) through the night and managed to keep her out of the ER. About 4am she coughed up a mucus plug and she drifted peacefully off to sleep. She has watched a lot of movies over the last several days, as she is not allowed out until this cold gets under control. Her new fav is Indiana Jones and the Crystal Skull. We watched it for a slumber party (I figured she would last 20 minutes then want to sleep) and she made it through the whole movie and wanted to chat about it afterward. Indy is truely a hero for the ages.
We are preparing for our next UCSF visit this upcoming Tuesday. They will do the spinal tap, chemo and ultra sound this visit. While it is kind of frightning because it just is, I can't wait for the news to see if they are going to have to do the shunt or not. She has reached a plateau and just can not get any better.
I finally included the sites for Family House and the Central Valley Make A Wish. If anyone would like to make donations to these wonderful organizations please check out the web sites. These organizations have helped make a huge difference in our lives.
Talk to you all soon,
Roni
Monday, October 13, 2008
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
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
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