This blogs for you - Randy (and everyone else)

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!!

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.

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!

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.

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.

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.

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!

Lucy and Mom Update

Not a lot to update on either one - except they are both doing well.
Lucy continues to just excel in her recovery. The only residual issues at this point are her right foot - which still doesn't work completely. She can push off with it, but can't pull it up or more her toes. Every now and then we get a slight movement, and get very excited. She has a brace for when she is sleeping, or in bed for long periods, and just got a walking brace for when she is doing therapy or walking around. She is getting better and better at getting her coordination and balance back to what they were. She is working in therapy on stairs a lot, since we have a multi-level home with no bathroom on the main level - as well as the fact that it requires stairs to get into the house. Her spirits are up, and she isn't hating life here anymore. I almost think she will miss it when we go! The team meets tomorrow to let us know what our release date is. The doctor said she is walking so well - even "go home well" is what he said. The other issue is her sodium levels. If you want to understand that better - look up SIADH on the Internet. It explains the syndrome better than I ever could.
Mom is doing well with Tanya and Sean. She is getting back on schedule with her regular doctor appointments, and getting her liver issues taken care of. They are thinking she has liver cancer, and the oncologist has referred her to a surgeon in San Francisco (we can't escape that city). Today they meet with her liver doctor, and I will update more tomorrow, when I have the info from that appointment, as well as Lucy's release date.

Kerr jar soup, ladybugs and Primary!

Sunday was quite a busy day for Lucy. First of all, her friend Abby came to visit again - and stayed most of the day. They had so much fun together. Then, she had a visit from the Primary Presidency, who brought her the most amazing poster board ladybug card. Each of the Primary children had written a message inside of a ladybug, and then decorated it's wings, which were attached with brads - so Lucy could open each of the bugs wings to read the message. The were complete with googly eyes! They also brought her a chocolate Ladybug, filled with little ladybugs inside, some cool ladybug sunglasses, a color your own purse, a plate of cookies - and some wonderful homemade soup in a Kerr jar for me! And, I saved the best for last - they videotaped Primary, so Lucy didn't miss it, and could have church at the hospital. As soon as they left, Lucy put the DVD in to watch. She loved it. Then while she was watching that - Ryan came to visit, and brought Emmie and Abigail to visit. Then Tanya came to visit, and they played Payday, and ate snacks all evening. I so wish I had a card reader, so I could upload pictures. I think that I will go back, and edit the posts with pictures when I get them off the memory card at home.

Hospital Heaven

So, we all know up front, that nobody wants to be in the hospital. But today I was teasing Lucy that she had it made when the nurse and I were giving her a shower for the first time. I told her that want to be waited on with room service, get to go to the gym everyday, then get a spa treatment (that's what Tanya and I used to call it when we would wash Mom in San Francisco last year). Not to mention all the extras - wait, let's do mention them. So this post will talk about the positives of her stay:

• The staff is amazing. We are so happy with how thoughtful and kind all of her nurses, doctors and therapist are. Even the food service, laundry and cleaning staff are sweet and efficient.
• Child Life - this is a wonderful program here where there have music time, arts and crafts, a huge playroom filled with toys, volunteers who will play with your child if they want, etc. They have loaned Lucy a laptop, so she can Skype family and friends - as well as play Club Penguin online (that is what she is currently doing - so I have time to blog).
• Visitors, visitors, visitors!! I blogged already about some of them. She also has had her Principle, Deedra Devine visit, as well as her current teacher, Julie Olsen. Mrs. Olsen brought in an activity book and candy, as well as a Dr. Seuss Night book bag filled with books from the Librarian, Mrs. Miles. Also, she brought Lucy a pile of homemade cards that the kids in her class had made for her. She was a bit distracted with her friends with Mrs. Olsen came; but enjoyed reading every card later that afternoon. She thoughtfully looked over each one, and talked about the student who made it for her. What a wonderfully supportive and loving school Buckeye Elementary is. That is why when we moved, we made sure to keep the kids there - we love it. She had our good friend Randy Bartlett (Premier Entertainment - why not give him a plug? http://www.premierentertainment.biz/ ) visit - bringing her a pile of activities (create a Butterfly diary, sticker activity book, How to draw book). Our dear friends Cyndi and Donald come and visit with Starbucks hazelnut hot chocolate (for her and Mommy - yay!), as well as a cool light up constellation ladybug, a stuffed Eric Carle grouchy ladybug (which fits her mood sometimes), and a Ladybug Girl and Bumblebee Boy book (where the girl is named LuLu). They also gave Ryan and me an sweet card with an Arco gas gift card inside. She had her friend Abby come back again yesterday, and I think Rachel is coming again today. In addition to Uncle Travis, Aunt Krista, Aunt Cheri and Bishop Melville who have made multiple visits. Poor Grandma and Aunt Tanya haven't been able to visit yet - but maybe will soon.
• Therapy - she loves the playroom and having fun. Although it is hard work, they make it play. When I asked her what her favorite part was, she said "All of it". Kinda like having a personal trainer at the gym, huh? I miss that. Someday I would like to go back to Zack at 24Hour Fitness in Folsom - he's the best! It's tough, but he makes it fun, and I loved the results.
• Room Service - She gets to order off a wonderful menu, and the food is good. When she wants more of something, they get her more. Must be nice. ;-)
• Doritos, Doritos, Doritos (plus Bacon and Turkey Sausage galore). Lucy thought this deserved it's own bullet point.
• Complete package - including a TV, DVD player, VCR, telephone (to 916 & 530 area codes), Internet, Skype, waited on by Mommy and hospital staff, etc.

This is like Christmas for Lucy (and the rest of the family). The family has received meals brought in every night by loving members of Cameron Park and El Dorado wards. My mom's cousin, Mary K is sending a little something for each of the kids at home, who aren't getting Mommy's attention. As well as sweet cards and gifts from so many people (The Funk family, Neldine Valles, Marva and Ed, etc). Yesterday her Aunt Summer's family sent her a gift basket filled junk food snacks and a cute little stuffed kitty, with a Get Well Balloon flying over it. Sweet Becky Gibson even included a Candy gift bag for Ryan and my Anniversary.

The best gift of all is your love, support and prayers for our family during this time, as well as the blessings we have received from our Heavenly Father. Even Dr. Boggan, who came in today, said he was praying for Lucy. We continue to be showered with kindness from everyone. We are so blessed!

With Flowers...

So today I was talking with Emmie, Esther and Nathan on speaker phone. I was telling them how much I missed them and loved them. I made Esther delighted when I repeated (as I often do), that she is my little honey muffin, honey bear, honey bunny, honey bee, honey love. Then I was telling Nathan that I missed him - and he said in a very sad voice "I miss you Mommy". I told him "I love you like crazy!!" to which he replied "I love you with flowers!" How I love my children so!!

Dr. Seuss' Birthday Celebration

So last Friday, on the day of Lucy's surgery, she was so sad that she was going to miss the big snow storm and Dr. Seuss Night at school. As it turns out, Dr. Seuss Night was postponed, due to the pending storm - which also never happened. So she didn't miss them.

Then, on Dr. Seuss' actual birthday, the hospital had a big celebration. They offered a buffet breakfast of green eggs (scrambled) and ham (as well as fresh fruit) to the families on the floor. Normally we don't get food here, just the kids. Then they served the kids green eggs on their breakfast tray, along with their normal choices of food. Then a doctor dressed as the Cat in the Hat came around to see the kids.

The playroom spent the day playing games, reading stories, doing crafts, etc. all centered around Dr. Seuss, for the kids to come and go as they wanted to. It is so neat all they offer to the children here at UC Davis.

I haven't been able to post pictures, because I don't have a card reader here at the hospital - but the wonderful lady who took pictures of the kids with the Cat in the Hat, emailed me the pic, so I could share it with you. Enjoy!

Lucy is doing GREAT!!

I'm so sorry I didn't get this posted yesterday - but we didn't have a spare moment between doctors and guests. Then in the evening, Travis and Krista came up to stay with Lucy, and Cheri picked me up, drove me home, and stayed with the kids while Ryan and I got to go to dinner for our anniversary. We went to a place called Bistro 33 in El Dorado Hills - and it was wonderful. Great food, fantastic service, and best of all - an hour of candle lit conversation with my husband of 16 years.

Now on to Lucy; she is doing fantastic! It is miraculous how fast she is healing. She is surpassing what they thought she would, and just flying through by leaps and bounds. She is now up standing and walking with support. She is getting stronger everyday. They came in yesterday and cast her for a brace for her right leg. She has a soft brace for when she is not on her feet; yeah, it may be soft fleece inside, and soft foam outside - but the metal frame makes Lucy disagree with the name of it. She has to wear that on and off every two hours, and all night long. Then they are making a walking brace, which should be ready by tomorrow that she will wear when she is up and about. They are to help her Achilles tendon not get tight, as she still can't flex her right foot up. However - she did wiggle her toes a tiny bit - which was huge!! Our friend Randy would like to claim credit for that, since he came to see her the day before - when she couldn't move her toes, and then the next day she could. :-) He's funny.

She also got one more IV out yesterday, so she is down to just one left (out of four). That was exciting, and we are working with her on bending her hand at the knuckles, because she tends to hold it up in the air and stiff, as if the IV was still there. She was able to close it into a loose fist yesterday for a bit.

Her sodium is holding - so she is still eating all the salt she can through bacon, sausage, Gatorade and Nacho Cheese Doritos. Her thumb and forefinger are turning orange from those chips.

She also is doing great about her stitches and hair. I had talked with her, letting her know that although it was not fun or what she would choose for her hair, there are many kids who have it worse off than her, and still keep a good attitude and cheerful disposition. I don't know that she believed me, or took it to heart - until I started taking her to the playroom, where she started seeing other children here. Now she walks around without her hat on, and even looks in the mirror, and gets excited that her hair is starting to grow back so quickly. She has been fighting me in washing off her "extra eyes". When she had her Stealth MRI, they put these "donuts" on her head all around her forehead, behind her ears, and on either side of the top of her head. Then they had to trace around them and in the middle hole with a Sharpie, to mark where they were, in case one fell off somehow. I told her I would take a picture, then she would need to let me take them off, now that it has been a week. We are still waiting to see if she can take a shower today, and wash her hair finally.

She should be coming back from her morning therapy soon, and then wants to participate in the Child Life celebration, where they will be making musical instruments out of medical supplies, and then parading around the pediatric unit to kick off music group!

Trying to stay positive amidst more sad news

OK, so there are some updates.

Lucy's doctors now think that her deficit is more on the permanent side, and not temporary. She is not responding to the steroids, so they are going to start weaning her off of those. Her sodium is still low, so we are loading her up on bacon, chips, Gatorade, etc. She also has to drink this sodium chloride that she detests - and still it is too low. We are working on that. They have decided that she needs intense therapy - in patient. They are trying to clear through insurance now - and she will be here for a minimum of 1-2 weeks, maybe 3-4 or more. We will know more after she has had a week of therapy, and we can see how it is going.

When the doctors came in and told me that, it broke my heart. I was tired from no sleep, and have held it all in emotionally for the kids - but I couldn't. It was as if a dam broke, and the tears poured out. I guess the nurses got worried, and sent social services in to talk to me. I had to tell Tanya that Mom needed to go live with her and Sean until Lucy and I could come home - then I would take Mom.

We are not telling Lucy that they are saying it is permanent for a few reasons. First of all - they are not always right with things like that. The therapist told me that they have worked with kids that the doctors said would never walk - and they got back to 100%, whereas other cases that were mild, and they were sure would heal after rehab, never did. Secondly, that is not a good way to start rehab, by someone telling you that your issues are permanent; talk about a reason to give up trying before you start!

However, things picked up, as I talked with resource people here, and they hooked Lucy up with a loaner computer with Skype on it - so she can see and talk with family and friends who can't come in. Also, she had a load of visitors today that lifted her spirit sky high! First, Ryan came in and stayed with her, while I ran home to shower and gather some things, and pay some bills. Next, Bishop Melville came in, and brought a travel Connect 4 game, and played two games with Lucy (which she won). Then her friend Abby came in with her Mom. They brought her beautiful pink and yellow tulips, a balloon, donuts, beautiful handmade card and a picture of Abby. Then her friend Rachel came with her Mom and sisters, and brought her a box of Girl Scout Thin Mint cookies. Then our Relief Society President, Cheryl, came with her granddaughter, who had made yummy homemade cookies, and brought her and me a new book to read. Also, while I was at home, a package arrived for Lucy from the Buchan family, with a card, a new journal (which she already wrote in), and a cool Barbie MP3 Player (complete with changeable Barbie faceplates). We went to the playroom with everyone, and they played games and had so much fun. For the first time in days, Lucy came back to the room, ate her entire dinner, had her meds without being upset or complaining. It was awesome!!! Thank you so much!! For those who have asked, she is at UC Davis Medical Center, Sacramento - Rm. 7785, Bed 2.