Ryan just told me there are some who don't like to hear the music on my blog (I do admit, I need to update it). Some have said they love it, and others do not.
If you do not - you just scroll down to the bottom of the page, and hit the pause button on the player, and it will stop the music while you are reading.
Hope this helps!! :-)
Sunday, July 31, 2011
OK! OK! Here's another update!!
OK, after much harassment (you know who you are, and there are more than one of you!) - here is another post. I do have to agree that it is long overdue. Time is just flying by, and I don't know where it is going! I can't wait for life to get boring. School starts for the kids (4 out of 5) on August 10th, and so it will be just Esther and I all day. I am hoping that I can have some quality time with Esther, since I have been gone so much for her whole life (with doctors, surgeries and such for Mom, Lucy and Emmie), as well as have some time to get things done around the house (organizing, cleaning, etc). Plus there will still be more doctors, procedures and such for Mom.
Lucy is doing wonderfully! She turns 10 tomorrow - and has been counting down the days for the past three months. I wish I was one of those Mom's who did a "dedication blog" to my children on their birthdays. Maybe someday. She only has therapy 2x a month, and you would never even know she had brain surgery. Her hair is growing in nicely, and you either don't notice, or people think she just cut her own hair. She is still an amazing, sharing, brilliant, beautiful, funny girl.
Emmie is, at this moment, on her way home from Australia - and I pick her up at the airport tomorrow at 12:20pm. I can't wait to see her pictures and hear all about it. She has emailed and called periodically, but our visits and emails were short, because she had to pay for the Internet, and was borrowing a cell phone to call us. She will be doing a formal presentation to the Lion's Club in a few weeks, and we will be having an open house for friends, family and sponsors to come and view her pictures and hear all about her trip.
Mom - where do I start. OK - so she is on the transplant list, and we (Mom, Tanya and I) have to do everything in San Francisco. We have required classes and support groups, as well as doctors appointments and procedure for Mom. So if Mom's tumor in her liver grows beyond a 5, or spreads outside the liver, she will not be eligible for a liver transplant. They tried to do a Chemo Embolization several months ago, which did kill some of the tumor, but not enough. It did make a lot of Mom's hair fall out, thinning it out, but the part that didn't was her "newer growth" (as our hair is constantly shedding and replenishing), which was shorter, so she cut the "crypt keeper" long strands (as she called it) that were left here and there, and now has a very cute short curly style. The procedure wasn't successful enough to make them happy or to repeat it. So now she will be going in for a more invasive procedure called Microwave Embolization, where they try to do it lapriscopically if they can, and if not, they will open her up. This is where they go directly into the tumor, and "cook" it to try to kill it. She will be in the hospital for a minimum of 3 days after that procedure. They can't get rid of the cancer, but are trying to keep it at bay and buy time until Mom can get a new liver. They are also now advising her to take an "Extended Criteria Doner" liver, so that she can get a liver sooner. The Extended Criteria Donors are people that maybe had Hep B, but the liver is clear, or they are older or have a fatty liver. There are a shortage of livers, and some people die while waiting. So they think she should consider this option, as they are still good livers, and would work fine in her, since she is not at the late stages of liver disease - when it wouldn't work unless it was a "prime" liver, but is racing time with the tumor. There are a lot more livers available that fall into the Extended Criteria category - so her chances of getting a liver before her tumor gets to big or spreads is increased. To make it more interesting, when she went in for her final x-ray of her hip, the doctor said it actually hadn't healed, and so she has to have a partial hip replacement. This can't be scheduled until at least 4 weeks after her tumor surgery. Then after her hip replacement, she has to wait a bit, and go back to San Francisco for a colonoscopy and endoscopy before she can actually get a liver.
It has been quite a bit financially on Tanya and I (since Mom doesn't have any money, Tanya and I split it, pay for everything (food, gas, hotels, etc.) for all the trips to San Francisco). The tough part is when Mom actually gets her liver, because we are required to have saved $5,000 - $7,000 to cover the extra cost. During the surgery, we as her support people, are required to stay in San Francisco, and be at her bedside from 8-5 for training. Also, after Mom is released, we are required to stay in an apartment with Mom in San Francisco 24/7 for another 4-6 weeks (depending on how she is doing). Looks like fundraising isn't in the past for me, but rather has just switched from Emmie to Mom.
Mom is hanging in there though. She doesn't like the required diet, fatigue, confusion, memory loss - or Tanya and I having to baby her, but knows it is a necessity. We also have to keep tabs on her - as the liver disease can cause her to go into a coma very easily. So she calls and checks in every 4 hours - and at night calls when she wakes up throughout the night. Also, she has to make sure to answer the phone whenever Tanya or I call to check on her (which isn't fun for her, since the liver disease makes her sleeping habits crazy - so she may be up all night, and just getting to sleep during the day, and we are calling her). But we told her if she is getting rest, she needs to let the machine answer for everyone else calling just to chat. So don't worry if you call, and she doesn't answer. Tanya and I are keeping very close tabs on her. Also, please don't be offended if you call her, and she doesn't answer - she may just be getting to sleep, no matter what time of day or night it may be. Also, her computer died, so she is without email right now. You can send mail to her PO Box - and I check that for her periodically. She (and we) appreciate all your love and prayers in her behalf.
Just like with Lucy, I will blog if anything significant happens, or will blog the mundane if I have time....ha ha ha...did I just say I might have time....I'm funny! ;-)
Thank you all for being so loving, kind, helpful and patient with me and my crazy family year! Have a wonderful week!! :-)
Lucy is doing wonderfully! She turns 10 tomorrow - and has been counting down the days for the past three months. I wish I was one of those Mom's who did a "dedication blog" to my children on their birthdays. Maybe someday. She only has therapy 2x a month, and you would never even know she had brain surgery. Her hair is growing in nicely, and you either don't notice, or people think she just cut her own hair. She is still an amazing, sharing, brilliant, beautiful, funny girl.
Emmie is, at this moment, on her way home from Australia - and I pick her up at the airport tomorrow at 12:20pm. I can't wait to see her pictures and hear all about it. She has emailed and called periodically, but our visits and emails were short, because she had to pay for the Internet, and was borrowing a cell phone to call us. She will be doing a formal presentation to the Lion's Club in a few weeks, and we will be having an open house for friends, family and sponsors to come and view her pictures and hear all about her trip.
Mom - where do I start. OK - so she is on the transplant list, and we (Mom, Tanya and I) have to do everything in San Francisco. We have required classes and support groups, as well as doctors appointments and procedure for Mom. So if Mom's tumor in her liver grows beyond a 5, or spreads outside the liver, she will not be eligible for a liver transplant. They tried to do a Chemo Embolization several months ago, which did kill some of the tumor, but not enough. It did make a lot of Mom's hair fall out, thinning it out, but the part that didn't was her "newer growth" (as our hair is constantly shedding and replenishing), which was shorter, so she cut the "crypt keeper" long strands (as she called it) that were left here and there, and now has a very cute short curly style. The procedure wasn't successful enough to make them happy or to repeat it. So now she will be going in for a more invasive procedure called Microwave Embolization, where they try to do it lapriscopically if they can, and if not, they will open her up. This is where they go directly into the tumor, and "cook" it to try to kill it. She will be in the hospital for a minimum of 3 days after that procedure. They can't get rid of the cancer, but are trying to keep it at bay and buy time until Mom can get a new liver. They are also now advising her to take an "Extended Criteria Doner" liver, so that she can get a liver sooner. The Extended Criteria Donors are people that maybe had Hep B, but the liver is clear, or they are older or have a fatty liver. There are a shortage of livers, and some people die while waiting. So they think she should consider this option, as they are still good livers, and would work fine in her, since she is not at the late stages of liver disease - when it wouldn't work unless it was a "prime" liver, but is racing time with the tumor. There are a lot more livers available that fall into the Extended Criteria category - so her chances of getting a liver before her tumor gets to big or spreads is increased. To make it more interesting, when she went in for her final x-ray of her hip, the doctor said it actually hadn't healed, and so she has to have a partial hip replacement. This can't be scheduled until at least 4 weeks after her tumor surgery. Then after her hip replacement, she has to wait a bit, and go back to San Francisco for a colonoscopy and endoscopy before she can actually get a liver.
It has been quite a bit financially on Tanya and I (since Mom doesn't have any money, Tanya and I split it, pay for everything (food, gas, hotels, etc.) for all the trips to San Francisco). The tough part is when Mom actually gets her liver, because we are required to have saved $5,000 - $7,000 to cover the extra cost. During the surgery, we as her support people, are required to stay in San Francisco, and be at her bedside from 8-5 for training. Also, after Mom is released, we are required to stay in an apartment with Mom in San Francisco 24/7 for another 4-6 weeks (depending on how she is doing). Looks like fundraising isn't in the past for me, but rather has just switched from Emmie to Mom.
Mom is hanging in there though. She doesn't like the required diet, fatigue, confusion, memory loss - or Tanya and I having to baby her, but knows it is a necessity. We also have to keep tabs on her - as the liver disease can cause her to go into a coma very easily. So she calls and checks in every 4 hours - and at night calls when she wakes up throughout the night. Also, she has to make sure to answer the phone whenever Tanya or I call to check on her (which isn't fun for her, since the liver disease makes her sleeping habits crazy - so she may be up all night, and just getting to sleep during the day, and we are calling her). But we told her if she is getting rest, she needs to let the machine answer for everyone else calling just to chat. So don't worry if you call, and she doesn't answer. Tanya and I are keeping very close tabs on her. Also, please don't be offended if you call her, and she doesn't answer - she may just be getting to sleep, no matter what time of day or night it may be. Also, her computer died, so she is without email right now. You can send mail to her PO Box - and I check that for her periodically. She (and we) appreciate all your love and prayers in her behalf.
Just like with Lucy, I will blog if anything significant happens, or will blog the mundane if I have time....ha ha ha...did I just say I might have time....I'm funny! ;-)
Thank you all for being so loving, kind, helpful and patient with me and my crazy family year! Have a wonderful week!! :-)
Sunday, May 29, 2011
Scrub Jay love
So Lucy and Abigail were outside having lunch in the sunshine, and they dropped a piece of bread, and a scrub jay quickly flew down and grabbed it. So Emmie went out with some corn tortilla, and they started throwing pieces of tortilla on a rock to watch the bird come back. But then there were two, and they were landing and sharing the tortilla really close to each other. So then Abigail whispers to Emmie - "Maybe the birds are...you know what." To which Emmie replies "What?" and Abigail responded "Maybe the birds are...you know...on a date!"
Wednesday, May 25, 2011
Can't sleep (yet again!) :-}
Well, yet another night that I can't sleep. I'm sure I will be sorry I've been up so long when the kiddos starting waking up for the day! :-) I decided to come down over 2 hours ago and work on some bookkeeping, check email, and thought I would take the time to do a quick update on everyone. There isn't really much to update - but I keep getting emails asking - so here's the scoop:
Mom: She is currently at my house, and now can put 50% weight on her leg, as long as she isn't hurting (that is new as of yesterday at therapy). She will still have weeks of living with us girls, and her computer isn't working again! If you aren't sure where she is and are looking to get ahold of her, just email me. She is on the transplant list, but not active - pending her getting a clear report on a lung infection (too hard to tell if it is from years ago, and just scars, or current). She wants to be home, but other than that, she is doing well.
Lucy: She is amazing. We are down to therapy 2x a month, and her most recent MRI looks like they got it all! YAY!! She still has residual "weak ankle", and we are hoping that therapy and time heal that. She is now brace free - double YAY. Still watching the tumor on her brain stem - but now we don't have to go back for another MRI for 6 months. Next week is the end of 4th grade for her.
Emmie: Don't remember if I wrote about her abnormal EEG's - after her strange episode in September 2010. They can't pin it on anything, so they did an MRI - which came back normal, which is fantastic! Still don't know why the EEG's are abnormal, or what the cause is of her seizure/numbing - but they are pretty sure it will pass, and that it isn't Epilepsy. Also, she has pretty much received all the money for her Ambassadorship to Australia this July. Now she is just fundraising for her spending money, and to buy the Thank You gifts she is supposed to bring to hand out to everyone in Australia (i.e. - tour guides, home stay family, motor coach drivers, etc). This is her last week of 7th grade homeschooling (which we are both excited about), and her last meeting, including her big project for the Ambassadorship is this Friday night. A huge thank you to everyone who has helped her with this trip. I will do a separate blog about all those wonderful people (although it scares me a little, because I don't want to accidentally leave anyone out).
Abigail: She is gorgeous! Head to toe, model gorgeous. She is finishing 1st grade next week. She is still "feisty" as ever, with total Princess syndrome - but that is good, I've realized. At one point, she asked me what was wrong with her, because she didn't need therapy like the other three were doing at the time. I explained that therapy was good for Em, Lucy and Nate, but it was also a good thing not to need therapy. She lives her life dancing around, singing, and coming into bed with me for snuggles every morning before she gets in the tub with Lucy.
Nathan: "How do you solve a problem like (our Nathan)? How do you catch a cloud and pin it down?" Familiar lyrics - completely fit him. He is finishing his half day preschool next week, and hoping to do all day preschool next school year (starting in August). He is still as the song says - wonderful, silly, crazy, difficult, loving, or as some put it "All Boy" - so true, so true.
Esther: She is almost 19 months old, and everyone loves her. For all the crying I did when I found out I was pregnant with her - we wouldn't trade her for anything. We always tell her "How did we think we could live without you?" She is especially close to Emmie (Me-Me) since she was the one caring for her while I have been gone off and on lately - as well as Em being home everyday since I home school her. Esther loves signing, and uses more signs than words. She can see a sign once, and starts using it. She is so smart!!
Ryan: Is crazy busy with work right now, which has been a huge blessing that we can pay the bills - but we never know when he is coming or going, and when he is home - he is usually in the office editing. He has started playing "Pickle ball" at the Hulbert's house, and loves it. So much that he started a "Pickle ball Diet", and has lost almost 20 lbs so far.
Me: Same ol', same ol'. My memory is gone - I can't remember things from one day to the next, so I am a loony bird - but loving my family and grateful to God for blessing me as he does so immensely.
Mom: She is currently at my house, and now can put 50% weight on her leg, as long as she isn't hurting (that is new as of yesterday at therapy). She will still have weeks of living with us girls, and her computer isn't working again! If you aren't sure where she is and are looking to get ahold of her, just email me. She is on the transplant list, but not active - pending her getting a clear report on a lung infection (too hard to tell if it is from years ago, and just scars, or current). She wants to be home, but other than that, she is doing well.
Lucy: She is amazing. We are down to therapy 2x a month, and her most recent MRI looks like they got it all! YAY!! She still has residual "weak ankle", and we are hoping that therapy and time heal that. She is now brace free - double YAY. Still watching the tumor on her brain stem - but now we don't have to go back for another MRI for 6 months. Next week is the end of 4th grade for her.
Emmie: Don't remember if I wrote about her abnormal EEG's - after her strange episode in September 2010. They can't pin it on anything, so they did an MRI - which came back normal, which is fantastic! Still don't know why the EEG's are abnormal, or what the cause is of her seizure/numbing - but they are pretty sure it will pass, and that it isn't Epilepsy. Also, she has pretty much received all the money for her Ambassadorship to Australia this July. Now she is just fundraising for her spending money, and to buy the Thank You gifts she is supposed to bring to hand out to everyone in Australia (i.e. - tour guides, home stay family, motor coach drivers, etc). This is her last week of 7th grade homeschooling (which we are both excited about), and her last meeting, including her big project for the Ambassadorship is this Friday night. A huge thank you to everyone who has helped her with this trip. I will do a separate blog about all those wonderful people (although it scares me a little, because I don't want to accidentally leave anyone out).
Abigail: She is gorgeous! Head to toe, model gorgeous. She is finishing 1st grade next week. She is still "feisty" as ever, with total Princess syndrome - but that is good, I've realized. At one point, she asked me what was wrong with her, because she didn't need therapy like the other three were doing at the time. I explained that therapy was good for Em, Lucy and Nate, but it was also a good thing not to need therapy. She lives her life dancing around, singing, and coming into bed with me for snuggles every morning before she gets in the tub with Lucy.
Nathan: "How do you solve a problem like (our Nathan)? How do you catch a cloud and pin it down?" Familiar lyrics - completely fit him. He is finishing his half day preschool next week, and hoping to do all day preschool next school year (starting in August). He is still as the song says - wonderful, silly, crazy, difficult, loving, or as some put it "All Boy" - so true, so true.
Esther: She is almost 19 months old, and everyone loves her. For all the crying I did when I found out I was pregnant with her - we wouldn't trade her for anything. We always tell her "How did we think we could live without you?" She is especially close to Emmie (Me-Me) since she was the one caring for her while I have been gone off and on lately - as well as Em being home everyday since I home school her. Esther loves signing, and uses more signs than words. She can see a sign once, and starts using it. She is so smart!!
Ryan: Is crazy busy with work right now, which has been a huge blessing that we can pay the bills - but we never know when he is coming or going, and when he is home - he is usually in the office editing. He has started playing "Pickle ball" at the Hulbert's house, and loves it. So much that he started a "Pickle ball Diet", and has lost almost 20 lbs so far.
Me: Same ol', same ol'. My memory is gone - I can't remember things from one day to the next, so I am a loony bird - but loving my family and grateful to God for blessing me as he does so immensely.
Thursday, May 19, 2011
Thank you for your votes!!!
So a HUGE thank you to everyone who took the time to vote for our kids in the Mash Destruction contest. As a result - we made it to the final 20, and the judges chose our roller coaster idea as a first prize winner of $1000. We will be putting in savings and adding to it to go to Disneyland with the kids as soon as we have enough saved with it. You can see the results at:
http://mashdestruction.com/final/winners
Thanks again!!! :-) You're support is awesome!
http://mashdestruction.com/final/winners
Thanks again!!! :-) You're support is awesome!
Monday, May 9, 2011
Mom's approved!
So here is some great news on Mom. We got a call that told us that she was approved for the Liver Transplant List. She isn't on it yet, because she has to do some more tests and classes over the next 4 weeks - but then they will put her on. So we will be back and forth to San Francisco a lot in the next month.
Also, the doctor in San Francisco did more x-rays on her hip, and said that he thinks it is healing just fine. He was calling her Ortho Dr. here, and talking with him about just putting Mom on therapy to start getting around.
So hopefully by next month, she will be on the list, and getting around more. Keep your fingers crossed and your prayers coming! :-)
Still the best way to reach her is by email, as she is still rotating between Tanya, Cheri and Me. :-)
Also, the doctor in San Francisco did more x-rays on her hip, and said that he thinks it is healing just fine. He was calling her Ortho Dr. here, and talking with him about just putting Mom on therapy to start getting around.
So hopefully by next month, she will be on the list, and getting around more. Keep your fingers crossed and your prayers coming! :-)
Still the best way to reach her is by email, as she is still rotating between Tanya, Cheri and Me. :-)
Tuesday, May 3, 2011
Yet another update on Mom
OK - so I am once again in San Francisco with Mom and Tanya. We were here most all of last week, got home Saturday night from her Liver Transplant Oval, and had to be back Monday morning for her Chemoembolization. Not sure how long we will be here this time. I will let you know how things are going as we know.
For the Transplant list, they take all the information from the doctors we saw and tests that were done, and meet as a board with her Liver Doctor to decide if she gets on the list, and how high up - that will happen in about 2-4 weeks. I will let you know when that is decided, and more info on what will happen at that point.
As far as the Chemo - they will do a CT scan in a few months, to see if it worked or not, and we will go from there.
And her hip surgery we are still waiting on. They are looking at doing it in 2-3 weeks. We are still doing a "Mom-share", and so the best way to contact Mom is through email - and she can call you or email you depending on where she is.
Thanks for your patience, and remember - no news is good news...(that is until we are waiting on a liver, then we want news!). :-)
For the Transplant list, they take all the information from the doctors we saw and tests that were done, and meet as a board with her Liver Doctor to decide if she gets on the list, and how high up - that will happen in about 2-4 weeks. I will let you know when that is decided, and more info on what will happen at that point.
As far as the Chemo - they will do a CT scan in a few months, to see if it worked or not, and we will go from there.
And her hip surgery we are still waiting on. They are looking at doing it in 2-3 weeks. We are still doing a "Mom-share", and so the best way to contact Mom is through email - and she can call you or email you depending on where she is.
Thanks for your patience, and remember - no news is good news...(that is until we are waiting on a liver, then we want news!). :-)
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