OK - so I got a phone call, where I am in big trouble. He has forgiven me now, but Randy was very upset that I got him hooked on my blog, then quit writing. I tried to explain that I am a crazy woman, trying to catch up on Emmie's homeschool, her fundraising (next payment of $2000 is due next week, and we are still over $500 away - then the final payment of $3750 due in May), as well as the unbelievable pile of laundry and dishes I had to catch up, and keep up with. Then there is the corners and underneath of things. This is where everything went whenever Ryan asked the kids to pick up. I didn't realize how many corners and "underneaths" I had in this house. The bills (ours, Mom's and business bookkeeping) had to be dealt with and taken care of, errands ran, shopping done, etc. It keeps going, but he said (and he is right) that it is no excuse not to do a quick update saying:
"Hello there. I am swamped - so gotta keep it short. Lucy is back at school, started therapy and is doing great! Mom is going to be going back and forth between Tanya and I - so she can have a change of scenery. We will have an x-ray on April 11th to see if the surgery worked on her hip or if we have to do surgery again. Also, the week of May 10th we will be going to San Francisco to do the screening to get Mom on the Liver Transplant List, and most likely doing the chemo I talked about in an earlier blog. That's the update - gotta go!"
And he is right! Also, there are so many more Thanks that need to be given. I felt so badly that Aunt Karen, Uncle Jimmy and Chelsea sent Lucy this wonderful package, with a cool Ladybug lunch pail - adorable ladybug earring, a new Ty Beanie Baby Owl, and chocolate (green shamrocks and gold coins) and a sweet card - and I waited to call (for them to be home from work), and as usual, time slipped past me, then days slipped past. How rude of us. We do have our Thank You cards out, and are working on getting them done. Also, a HUGE thank you to all who brought in meals for my family while Lucy and I were in the hopsital, and the day we got home. I am still trying to find out who did that, and who I owe dishes to. :-)
Thanks for being patient, and I will try to be better about updates. Thank you again to everyone!!
Thursday, March 24, 2011
Sunday, March 13, 2011
We are home!
Not a lot of time - but a quick note to let you know that we are home, and doing well! Not sure yet when or if Mom is coming; I still need to talk with Tanya about that. Mom is missing the kids and I, but enjoying the quiet that Tanya's house has to offer. She is settled in, and Tanya and Sean have a schedule worked out now, so they may opt just to keep Mom there this time. I will update when that changes.
On another note - we got to go to church today. Lucy went in her wheelchair, as the halls get quite full and bustley (I know, that's not even a word :-), but it fits), and we don't want her to get knocked over accidentally, and her class is at the opposite end of the building as the chapel.
Lucy had quite the surprise when she got home - the Primary had made a huge, beautiful "Welcome Home Lucy" banner, and all signed it. They are amazing, and her ear to ear grin when she walked in was priceless! I wish I had my camera out; but alas, I didn't. I will attach a picture of the banner later, as well as pictures from the hospital.
It is nice to be home - loud, but nice! We joke that our kids only know two levels, loud and louder. We are trying to work on that. But seriously, I am so happy to be home again. Looking forward to getting everything back in order again.
On another note - we got to go to church today. Lucy went in her wheelchair, as the halls get quite full and bustley (I know, that's not even a word :-), but it fits), and we don't want her to get knocked over accidentally, and her class is at the opposite end of the building as the chapel.
Lucy had quite the surprise when she got home - the Primary had made a huge, beautiful "Welcome Home Lucy" banner, and all signed it. They are amazing, and her ear to ear grin when she walked in was priceless! I wish I had my camera out; but alas, I didn't. I will attach a picture of the banner later, as well as pictures from the hospital.
It is nice to be home - loud, but nice! We joke that our kids only know two levels, loud and louder. We are trying to work on that. But seriously, I am so happy to be home again. Looking forward to getting everything back in order again.
Friday, March 11, 2011
Strike a Pose
So here is a little trivia question...What do Aunt Tanya, Uncle Boo and Lucy all have in common? Well, OK - I guess that wasn't so specific, since they are all wonderful, talented, etc... What I was referring to is that they all have been models.
Yesterday Lucy was photographed for the Family Link program here at UC Davis. She will be on their website and on their new brochures for Family Link. That is their program here that loans laptops to patients, so they can stay connected with their family when in the hospital. She has used it to Skype and play with her friends on Club Penguin. It's also great for checking email, and blogging updates. So now she joins the ranks of family models!
Yesterday Lucy was photographed for the Family Link program here at UC Davis. She will be on their website and on their new brochures for Family Link. That is their program here that loans laptops to patients, so they can stay connected with their family when in the hospital. She has used it to Skype and play with her friends on Club Penguin. It's also great for checking email, and blogging updates. So now she joins the ranks of family models!
Thursday, March 10, 2011
No More Sodium Chloride!
So today Lucy and I had to use her day pass to go to her 10-day follow up appointment with Dr. Boggan. She is doing great! Her sodium was up to 140 for the first time - which is great. He said she didn't have to take the Sodium Chloride anymore. I thought I had mentioned (but couldn't find it), that their concern was that she had SIADH - which you can search on the Internet. It happens in about 70-80% of brain surgery patients. We just had to make sure that it went away, and it looks like it has. So now, she doesn't have to take the "brine water" as we called it, and she just has to finish with the Applebees boneless hot wings (her oral steroids - which she has gained 7 lbs from), and her blue raspberries (Pepcid). The blessings keep coming!
Also, Lucy was able to move her foot up a little today - which is huge!! I was so excited I could burst. She is so amazing!
Side note to anyone taking these meds: After much trial and error - the best way to take them according to Lucy is:
Sodium Chloride - put in medicine cup, and dip saltine crackers and eat.
Pepcid - it's awesome - save for last to counter the bad other medicines.
Decadron - dilute in a dixie cup of apple juice, and drink with a straw - yes, the straw matters.
Also, Lucy was able to move her foot up a little today - which is huge!! I was so excited I could burst. She is so amazing!
Side note to anyone taking these meds: After much trial and error - the best way to take them according to Lucy is:
Sodium Chloride - put in medicine cup, and dip saltine crackers and eat.
Pepcid - it's awesome - save for last to counter the bad other medicines.
Decadron - dilute in a dixie cup of apple juice, and drink with a straw - yes, the straw matters.
Wednesday, March 9, 2011
Three days and counting...
So the doctor came in today, and said that we are shooting for Saturday to get to go home. YAY!! On a more depressing note for Lucy, he said that she had to stop her crazy eating habits, and go back to normal - so we could make sure that she is doing well with her sodium on her own, and not because she eats 8 pc of bacon, salted egg, etc for breakfast, the equivalent of a family size bag of Doritos and Costco size bag of beef jerky daily, in addition to her sodium chloride they give her, and salted fries, soups and other foods. Considering she noshes all day long - and is still eating Doritos and jerky at 10pm in bed, she is already going through withdrawals!
Still not sure what will happen with school. Lucy is itching to get back (not to the work, but to see her friends), but she still can't walk very far without needing to stop. So she may be home until she can - or go back in a wheelchair for a while. We are going to see where she is on Saturday, when we get released.
Still not sure what will happen with school. Lucy is itching to get back (not to the work, but to see her friends), but she still can't walk very far without needing to stop. So she may be home until she can - or go back in a wheelchair for a while. We are going to see where she is on Saturday, when we get released.
Tuesday, March 8, 2011
Mom needs a transplant
OK - so here is the scoop on Mom, after seeing her liver doctor today. Apparently, the other doctor was very wrong. Mom wouldn't survive surgery to remove the tumor, as they would have to take so much of her liver, which would be fine for someone with a healthy liver, because the liver would regenerate itself - but for her, with her cirrhosis, it wouldn't regenerate, and she wouldn't survive it. She has a tumor that is about 3cm (an inch and a half in diameter) - and they rate them by size from 1 to 4. A level 1 is under 2 cm - which is too small to make it urgent for transplant; 3-5 is a two, and that is prime for transplant lists - because it is urgent enough, but not too far gone. A three and four are over that, and they are pretty much too late for transplant. So the good news is Mom is perfect in that aspect for a transplant. Also, since she doesn't drink or smoke anymore, and hasn't for a while - they like that too.
The plan at this point is that she is to go to San Francisco (yes, still going there), where she needs to have Tanya and I both there, a requirement to show she has enough family support, where we will stay with her in a hotel, while she undergoes the transplant list screening process. Upon approval, they will then begin a new type of Chemo - where they put a tube in going directly to the tumor, and they put in a chemo in the form of these little balls that basically act like leeches - and attach directly to the tumor in the liver. With this type of chemo, there is little to no side effects for most people. Only 1 in 20 have some side effects. They will call us to tell us when to come. There won't be an option for the time or date - they tell you when, and you show up. Then after she gets on the transplant list - then it is usually about 12-18 months before you are matched and get a liver for the transplant.
Her doctor doesn't know why the orthopedic surgeon didn't do the full surgery on Mom, once he had her open; so although she is doing well, and can get to the bathroom with her walker and good leg - she still has to be extremely careful, and have someone spotting her all the time, so she doesn't stumble and re-injure her leg. The surgery they did on it, was just putting in a few pins, and it only has a 25% chance of working to fix her femur - so that is why the extreme caution and care giving that is required. So as for now, Tanya and Sean are tag-teaming taking care of her between their appointments and work schedules, and she will most likely still come to live with me when we get out of the hospital; Tanya, Mom and I will discuss it. She is in a routine there - but if Sean starts working more, she won't have anyone to spot her during the day - so she will need to come to my house. She is just worried about all that I have going on, although I assured her that we would be fine and make it, as we did last year.
Tanya is sorry that she doesn't have a land line to have people be able to call Mom - but she only has a cell phone, and has already blown through over half her allowed minutes, and the month has just begun; not to mention that she uses that phone to run her businesses as well - so she can't afford to go over, and pay the rip-off overage fees that cell phones charge. Also, Mom's laptop is still on the fritz, so she can't check her email. I will work on getting that fixed when I am out of here. If you want to send a note or card, you can send it to: PO Box 1087, Shingle Springs, CA 95682. This is Mom's new mailing address, so you can put it in your book. I will check it, and deliver her mail to her; and that will save you from having to add Tanya's address, then mine, then Mom's PO Box later.
Thanks again for all your love, support, prayers and service to our family - we are so amazed at the angels all around us, who are always so willing to help. May God bless you all, as he has us.
The plan at this point is that she is to go to San Francisco (yes, still going there), where she needs to have Tanya and I both there, a requirement to show she has enough family support, where we will stay with her in a hotel, while she undergoes the transplant list screening process. Upon approval, they will then begin a new type of Chemo - where they put a tube in going directly to the tumor, and they put in a chemo in the form of these little balls that basically act like leeches - and attach directly to the tumor in the liver. With this type of chemo, there is little to no side effects for most people. Only 1 in 20 have some side effects. They will call us to tell us when to come. There won't be an option for the time or date - they tell you when, and you show up. Then after she gets on the transplant list - then it is usually about 12-18 months before you are matched and get a liver for the transplant.
Her doctor doesn't know why the orthopedic surgeon didn't do the full surgery on Mom, once he had her open; so although she is doing well, and can get to the bathroom with her walker and good leg - she still has to be extremely careful, and have someone spotting her all the time, so she doesn't stumble and re-injure her leg. The surgery they did on it, was just putting in a few pins, and it only has a 25% chance of working to fix her femur - so that is why the extreme caution and care giving that is required. So as for now, Tanya and Sean are tag-teaming taking care of her between their appointments and work schedules, and she will most likely still come to live with me when we get out of the hospital; Tanya, Mom and I will discuss it. She is in a routine there - but if Sean starts working more, she won't have anyone to spot her during the day - so she will need to come to my house. She is just worried about all that I have going on, although I assured her that we would be fine and make it, as we did last year.
Tanya is sorry that she doesn't have a land line to have people be able to call Mom - but she only has a cell phone, and has already blown through over half her allowed minutes, and the month has just begun; not to mention that she uses that phone to run her businesses as well - so she can't afford to go over, and pay the rip-off overage fees that cell phones charge. Also, Mom's laptop is still on the fritz, so she can't check her email. I will work on getting that fixed when I am out of here. If you want to send a note or card, you can send it to: PO Box 1087, Shingle Springs, CA 95682. This is Mom's new mailing address, so you can put it in your book. I will check it, and deliver her mail to her; and that will save you from having to add Tanya's address, then mine, then Mom's PO Box later.
Thanks again for all your love, support, prayers and service to our family - we are so amazed at the angels all around us, who are always so willing to help. May God bless you all, as he has us.
Happy Birthday Boy!
Today my little man turns 4. He is so excited that his birthday is finally here. I tried to get a day pass so Lucy and I could go home for Nathan's birthday, but alas, no such luck.
Nathan is so many things. He is a tornado, curious, destructive, crazy, tough, wild, messy, spontaneous, silly, "Monkish", intelligent, snugly, loving, thoughtful, good boy! When he gets a treat, he asks for one for "his girls" (meaning his sisters, Rachel, Grandma and me). He calls Esther "his baby", and he means it. His smile will melt your heart, and his hugs will completely liquefy you.
He is obsessed with all things "boy" - cars, trucks, planes, trains, mud, balls, etc. His favorite movie has switched from Cars and Up (both he still loves), to Pete's Dragon - because he is now loves lighthouses.
He loves to watch Umizoomi when he gets to, and can't resist sweets - especially chocolate. That boy will do anything for chocolate, and will sneak into it anytime he can, regardless the consequence.
A game he loves to play is "Squeeze the Air out of Me" - you got it...we hug each other so hard, we try to squeeze the air out of one another.
He started Preschool in January, and is so excited to go every day. He says his favorite part is his friends. He also became a Sunbeam this year, and transitioned well from Nursery. He gave his first talk in Primary (our children's church group) last month, and did great.
He brings such horror, chaos, frustration, joy, love and happiness into our lives, and we are so grateful to have him in our family.
We love you Nathan, Nate-the-Great, Natey, boy-boy! Happy 4th Birthday!
Nathan is so many things. He is a tornado, curious, destructive, crazy, tough, wild, messy, spontaneous, silly, "Monkish", intelligent, snugly, loving, thoughtful, good boy! When he gets a treat, he asks for one for "his girls" (meaning his sisters, Rachel, Grandma and me). He calls Esther "his baby", and he means it. His smile will melt your heart, and his hugs will completely liquefy you.
He is obsessed with all things "boy" - cars, trucks, planes, trains, mud, balls, etc. His favorite movie has switched from Cars and Up (both he still loves), to Pete's Dragon - because he is now loves lighthouses.
He loves to watch Umizoomi when he gets to, and can't resist sweets - especially chocolate. That boy will do anything for chocolate, and will sneak into it anytime he can, regardless the consequence.
A game he loves to play is "Squeeze the Air out of Me" - you got it...we hug each other so hard, we try to squeeze the air out of one another.
He started Preschool in January, and is so excited to go every day. He says his favorite part is his friends. He also became a Sunbeam this year, and transitioned well from Nursery. He gave his first talk in Primary (our children's church group) last month, and did great.
He brings such horror, chaos, frustration, joy, love and happiness into our lives, and we are so grateful to have him in our family.
We love you Nathan, Nate-the-Great, Natey, boy-boy! Happy 4th Birthday!
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