Monday, September 26

Make a wish-Steven-Regina and Heather-our dear Friends and neighbors:D
3 best friends forever. Regina , Heather and Jake met in Tutor time. Now they all have graduated from that school. Each of them goes to different elementary school where they attend Kindergarten glass. But they still get together for Bdays and sleepovers.
I hope you all went to Cilis to eat today. You know, 100% of the proffits went to St jude. That's big!!! Our family and 13 of our friends went to Chilis to celebrate Reginas 6th B day today. I did order her Princess cake as she wished and I was very happy how Cake Tasted and how Cake looked. Thanks Ralps bakery. Regina was very exited to go to Chilis. She loves theyr kids menu and she almost always orders Cheese pizza and french fryes. She was really happy to see her friends Heather, Jake, Jacob, Devin, Riley,Steven and Sean.:) She also LOVED all the presents. HOw could you not love princess nightgowns, cell phones and books. She is covered with pink faux fur blanket that Bells gang got her and she is watching her Barbie Dvd;). Thank you guys.You really helped make her B-day special . On our way home from Chilis she told me that she is really happy tonight because she knows everybody loves her. :D

Saturday, September 24

Princess Regina.:) Sleeping Beauty dress we got for her Birthday from Disney world.( I am not even going to mention how much it costed)

Thursday, September 22

Thing 1 Team- 4th member of our family did not want to be Thing. OUR limo( picked us up from airport and drowe us home from airport, bunny Merry who came to tuck Regina in in KGTW, and last pic is taken in GKTW. Yeah, there are lots of Rabbits running wild...
i see blue- lol. This was our Sea World outfit- classy huh??? OH, We also love Sea World- KGTW kids got always special treatment- first row seats, we were allowed to take strollers where ever we wanted, and in overall- Sea World loves its special guests :)
WE are very thankful for Make A wish and KGTW for all the good things they did for us. but we were hoping for more personalised trip for Regina. At least more peronalised WELCOME greeting/ or cake that was provided by them. This is the cake Regina got from Give kids the world. If I knew it was plain autumn cake I WOULD have gone out and ordered princess cake to make her B day more special. But oh well, on 26th of September Whe will GET the Princess cake she requested from me prior this trip. :)
TIgger and Regina. On 19th, Reginas B day we went to MGM studios. Every morning we asked from Regina where she wanted to go and she chose the places. We met Tigger, and Eyore, Jo-jo Circus,saw Playhouse Disney live, saw some ation heros, Goofy, Buzz and co, lilo, Chip and Dale( sp)- they are the coolest chipmunks. They just finished taking pics and they saw Regina, they hugged her, kissed her gave her signed cards and allowed us to take pics( it is weird how some characters were allowed to spend extra time with wish kids and some were hurried away and we were told come back later). OH- MISS CAROL--- We went to see the Muppet show 3D version. lol that was funny. ;) I told Regina that you like muppets , so she agreed to see what is all the fuzz about those weird talking seesame street lookalikes. lol
And our day Ended in Chilis. At first we wanted to go to Downtown Disney to have dinner, but Regina decided that she was too tired to do so and told us she feels like eating in Chilis. :)
Only place Gabriel was not scared was Dr Seuss Landing. He took rides and had fun running around. He also got over his Merry go round fear and so our days In KGTW started with rides and ended with rides.
WE also went to see SHREK 4D show. OH that was amaaaaaazing show. 4 d is way better than 3D. Chairs were animated, when characters sneezed in movie we got to experiense the sneezes( we got sprayed wet), when donkey or horse was running , chairs were bouncing up and down, when dragon was flying wind filled the theater. It was fun. After show we took pic with donkey. Donkey was fun . Donkey asked from Regina if she allready saw Shrek show. REgina sayed NO. I yelled from were I was taking pics that YES SHE DID SEE THE SHOW. Donkey made a little joke to Regina- I GUESS SHOW WAS THAT unforgettable that she forgot how unforgettable it was. AND UNIVERSAL WILL PAY FOR ALL THE THERAPY PARENTS NEED TO GET HER MEMORY BACK. lol Gabriel and Nick did not get to experience that show. Gabriel started screaming and my dh took him out of waiting area. :(
We LOVED, LOVED, LOVED universal. It was amazing how well wish kids were treated. When we entered the gates there were characters allready taking pics with people and since the line was short( only 2 kids in front of us) we decided to wait on line. But the Person with the characters who wore UNIVERSAl sign saw Regina and her Give Kids the World button, she took Reginas hand, and walked her straight to characters and sayed to us. DO NOT EVEN DARE TO STAND ON LINE. I about started crying. lol After we watched Barney live show, they told us TO WAIT and brought Barney to us so we could get pics with him and hug him .:) Amazing. Make A Wish told us that MAKEAWIHS button does miracles, but it really did not do so. THE button we got from GIVE kids THe World was like madic wand. Regina just had to flash it once and VOILA- she got what she wanted :) ( to compare Universal do disney- WE LOVE UNIVERSAL!!!!!!.
( Foto) Give Kids the world Madical Castle. We are back home. Our trip ended on LAX airport after that JET BLUE Landed( minutes after Jet blue Landed). We had busy busy busy time in ORlando. Weather was nice and sunny. Exept the last day (on 20th). We went to Seaworld and got to experience "Real" Sea world with horrible showers. We lived in Give kids the world village that has villas for 94 families( 2 bedroom, 2 bathroom, kitchen, living room). Life there reminded me Ronald Mc Donald house, because of all the buffet breakfast and dinners. Reginas original wish was to spend a day in Florida disneyworld and meet all the princesses and get a group pic with them, but this dream did not get fulfilled. We did MEET every other character but princesses. First day we went to Magic Kingdom- took about 8 rides- WITHOUT waiting on lines. Regina loved Show white ride and teacup rides( pretty much the same rides California Disney had).

Wednesday, September 21

HI you guys :) Our wonderful Orlando vacation has finally ended and we are back home. It was good vacation. let me remind you that I have 2 kids who each want different things- REgina was exited to try out some new stuff, but Gabriel was scared most of the time, so our trip went buy just giving Gabriel shock therapy , which means, we just dragged him everywhere where Regina went. SADLY, we did not meet any of the princesses :(. Princesses eather were resting or just finished taking picks and were about to go to rest. But Regina did not let that take her down. We got to take rides without waiting on line, we got plenty of character pics taken, we also got to meet Barney in person after Barney show. Right now I am little tired and will not update more, but I try to do more tomorrow. :)

Monday, September 12

Regina and Gabe sharing a loing moment:D
Look at Gabe- expression on his face is
Regina and Her wish granters From MakeAWish. :) And Pluto :)
Peanut butter pizza :D:D:D:D

Goofys Kitchen..

Today we went to Goofys Kitchen, In Disneyland Hotel for Reginas wish granting party. It is really fun place. Characters come to your tables, talk to you and and act silly. It was dinner buffet with HUGE dessert table. I think there were more desserst than main dishes. Regina did not feel very happy today. I think she wsa little scared and confused what was happening and why were all the characters stopping on her table. But she did warm up in the end. lol. It always happens when party is over. THen she is ready to have some real fun.
But at first I have to tell you about dessert table. lol I think I ganed about 10 lbs just looking at that table- there was peanut butter and jelly pizza, huuuge chocolate cake, cinamon bread pudding, cherry cake, rasberry cheescakes, lemon square cake, yello, 6 in chocolate chip cookies, rice crispies decorated as cake slices, ICE cream, frest fruits and even more. lol. It was amazing dinner ( at least for me). Regina had slice of cheese pizza, some ice cream and of course her Favorite- CHOCOLATE cake!!!!! Gabril was really scared at first. He refused to do anything at all. But he got really exited when Coofy wanted to high five with gabe. Gabe finally agreed to eat. He had 2 slices of pizza and lots of mac and cheese( miki shaped).
We also got our tickets- our adventure starts 4.30 AM on friday morning. Limo will pick us up and take us to LAX. Regina got Backpack full of things to keep her busy during her plane flight and she also got new dora the explorer packback. I thought dora was NickJr character, not disney- oh well, even the best of us make some mistakes. lol

More to come when I feel better- all that food I ate today made me feel little sick. So off I go.....

Saturday, September 10

Regina is feeling wonderful today. She has been very active and her apetite is slowly returing to her. Her sores are slowly healing and her cough is almost gone. Today we went to mall, because both of my kids wanted to have teriaky chicken, and only teriaky chicken they love is in Mission viejo mall :) After that I felt like baking and I made some cinamon rolls from scratch, then I made viener pirogies. Then I felt like eating homemade strawberry preserves. So I made that also. And I stuffed some dough with that and baked it. I also made some yeast dough doughnuts. :lol I swear, it is all about bread these days....
Regina is doing her cowgirl move. This pic is taken on thursday . After that pic was taken her coldsores spread all over her mouth.
Gabriel loves to pose. He brings me camera, chooses spot where to pose and tells me- TAKE MY PICTURE NOW :)

Update on Regina

Today is better day for her. She is still very congested and her face( mouth, lips and nose) is covered with blisters, but they are starting to dry and now she is all crusty. her cough is much better and she has not had any fevers. She still does not eat much. She has couple of bites of food and then she is done. I am trying to " force" her eat all day long( couple of bites in every half an hour).
She is up and playing right now which is good :)
She is taking 4 different meds now- her thyroid med once, antibiotics(2x a day), C-tussin(2X), acyclover(4x), and her vitamins.

Thursday, September 8

Some good news- at least for us they are good. :)

Doctor from St Jude endocrine clinic called today. I thought- OH NO, he does not want to reschedule Reginas October apointments. lol
But instead he told me that He and Doctor Gajjar had "couple" of conversations about Regina and her counts and growth etc and since she grew 1, 1/2 inches within past 3,5 months , he thinks that Regina does not have to go to st Jude in october for Insuline injected growth hormone testing. When we go to St Jude in December he will evaluate Regina one more time and if she continues to grow , then she does not has to get those daily growth hormone injections.
I feel pretty good about it. I was scared , so scared about that test. And now i can sleep somewhat better at night. :)
Dr Gajjar mentioned when we were in memphis that he tried to talk to Dr Shelso about this extra trip to St jude and that he thinks it is ridiculos to bring Regina in just for that one test. I guess Dr shelso listened to him and re-thought about his "experiment" with Regina. OR he just got scared at dr Gajjar.... lol

Regina still coughs a lot and has painful blisters in her mouths and on her lips. She did not get fever last night but she woke up every half an hour to drink water. ( I have not had good night sleep for 4 nights in a row now), Which makes me grumpy and moody and picky and icky...;)
Doctor Gajjar and Regina :)

Wednesday, September 7

We are home now :)- UPDATE 6.25PM

I took Regina to see his doctor here. We also got his chest Xrays done. I am not an expert , but what I saw bothered me. Her right lung was completely white on xray, and left one seemed normal. She had chest xrays before , but I have never seen image like that on her past x rays. I will know more tomorrow. :(
She feels horrible now, she throws up , can not keep even water down. She has slept most of the day, and she got bad mouth sores. And Her Right ear is also infected. :(:(:( I am waiting for fever to show up soon. I have to make her drink little more or we end up in hospital, because she is dehydrated. AND my dh is not home to help me out. :(:(:(

Scans were all nice and clean. Labs looked great :)
BTW. REgina did her scans without sedation :) Since she had fever and was caughing really bad they decided not to do sedation. She fell asleep the moment she entered the MRI and was still 45 minutes. And she even did not cough there.

They did not do x rays as they first promised. Now we are here and ready to go to Reginas pediatrition to get some meds to make her feel better. Robitussin in not working( coughing). Last night she spiked high fever again and I worked hard 3 hours do get her fever down( without the meds BTW). Around 2 am we fell asleep and had to wake 5 am to go to airport. :)

She threw up couple of times in airplane, but at least I know it is not due to braintumor.

Tuesday, September 6

Here we are and things don't go as planned

Yep, Regina had her audiology ( hearing) apointment. Her hearing is good, but her high frequency hearing is in critical zone.

Last night I decided to call doctor on call here because REgina was coughing way to much. We got robitussin and her coughing slowed down. Then , around 3 AM in the morning I woke up becuase she was coughing. I touched her forhead and she was burning up. I took her temp and it was 102,7. I panicked and was about to call 911( trust me, my first thougt was Oh no, she has low counts and she can not fight infections now- St Jude makes me think that way). But I just applied damp , cold washcloth on her forhead for 2 hours. ANd in the morning her fever was gone. Almost gone.

Around 10 am we got called in to get her anestesia going. But Itold them what has been going on and they decided not to sedate her. NOw we are back in E clinic area. THey will thraw her labs around2.15, give her some codeine( spelling?) and try to do MRI without sedation. OH yeah, right lung has little wheezing in, so she has to be x rayed also. ( her MRI is scheduled around 5 pm).

On a good note- I have not smoked for 2 days, so I really did not make any good friends here.....

Friday, September 2

Monday is aproaching...

Oh, yeah, and I am not looking forward to this St Jude trip this time at all. I have bad feeling about something, but not sure why and about what. Regina started coughing today- right now it is dry cough, but usually all her illnesses start with dry cough. :( I just hope that she will not get fever with it, othervise I just don't feel comfortable going there when she is sick. She also has been telling me that her head hurts again and she threw up once today. I am not happy when something like that happens. I'm not sure why she threw up , all I can hope is that she got somekind of bug from school.

We have set up automatic payments for Make a Wish organization here in Orange county. Today we got the newsletter and guess whose fase was on it?? REGINAS!!!! We attended Wild Rivers Make A Wish party , and she was making a butterfly there, and when it was finished they took her pic with butterfly. Her pic on newsletter is tiny, but it is on front page :):):):):) I showed it to her and she was very, very happy about it!:) So am I !!!!

Ok, now something frustrating again. Today , after I picked Regina up from shcool , 3 of us headed to mall to eat our lunch. Kids Love terriaky chicken there with rice and both of them clean up those huge plates of chicken and rice. After eating we went to pet store( in mall). After that they wanted to play. I TOLD GABRIEL AND REGINA TO STAY WITH ME and not run away. But you know- THEY DID NOT LISTEN. Regina took off running and took escalator up. Gabriel took off in totally different direction and refused to stop. So I finally yelled ( I think all people in the mall heard me). STOP RIGHT NOW. So he stopped. I yelled to regina to take escalator down, which she did without any complaints. We ran to Gabriel and I calmly took, him and made him apologise to me, which he did not. lol

after mall, nothing exiting happened. We went to best buy to
BThen suddenly somebody tapped to my sholder. It was one mom with 2 kids who had seen the whole ordeal. She told me that I don't know how I did it, but I handled it very well. She also sayed that she allready sees her future with 2 restless kids who each want different things, and she sees herself chacing her kids from one end of mall to another. :) lol Of course, Gabriel finally apologised after screaming 15 minutes face down on the floor, and me standing 10 feet away just minding my own business. Then we went to Best buy to get my iPod new USP cord and then Borders to get some books to read.
Kids eat really well during the dinner and now they are in bed.

And i am here worring about my upcoming memphis trip. Wish us luck and clean scans :)

Thursday, September 1

Go to Chilis to eat :D

**Copied from***

This September, give yourself a well-deserved break from the kitchen and provide hope to cancer-stricken children.

As part of National Childhood Cancer Awareness Month, Chili's Grill & Bar is asking its guests to donate $1 or more to color pinups of the Chili's signature pepper during its nationwide "Create a Pepper to Fight Childhood Cancer" campaign for St. Jude Children's Research Hospital. Additionally, Chili's will donate 100 percent of its profits on Monday, September 26 to St. Jude.

For more than 40 years, St. Jude Children's Research Hospital has been finding cures and saving children. Through its discoveries, St. Jude has helped push the survival rate for acute lymphoblastic leukemia, the most common form of childhood cancer, from 4 percent in 1962 to 85 percent today. And no family ever pays for treatments not covered by insurance, and families without insurance are never asked to pay. It takes more than $1 million a day for St. Jude to continue its mission.

Chili's is hoping its customers can help raise $3 million for the hospital during the campaign. Last year, Chili's raised more than $2.5 million at its more than 850 company-owned and franchised U.S. locations.

For the second year, Jeff Probst, host and producer of the EmmyTM Award-winning CBS-TV series Survivor, will serve as spokesperson for the campaign. "It couldn't be easier to have a positive impact on children who are fighting cancer," said Probst. "You go into any Chili's during the month of September and simply color a pepper for $1. It doesn't sound like a lot, but every dollar helps the children who depend upon the life-saving research and care provided by St. Jude."

For more information, to create a pepper online, or to purchase a "Create a Pepper" T-shirt, visit