HAPPY THANKSGIVING....

HAPPY THANKSGIVING TO YOU ALL.

Real fun week- not.

This week has been real interesting. no school for kids since wedsnesday. You, they have been home with me because of parent/teacher conferences on wednesday thursday and today is veterans day and of course DAY OFF. I am not liking this not one bit. All absent days in school will make my kids summer vacation really short. School ends on june 20th this year. Yuck. I have plans for summmer you know . I wish last day of school was june 10th.

allrighty guys. Guess what ?? 3 months have passed very fast and on sunday Regina, Gabriel and I will go to memphis again. THis time it is really short. Our flight lands in memphis 12 .15 AM ( yup, middle of the night lol) Our first apointment is on monday 4 pm ( MRI) . And on tuesday we have just patient screening an no off therapy and the we fly back to CA ( tuesday afternoon. ) We will be back 6 pm.

I am not asking much from you guys- just think about us and send some clean scan vibes to Regina :)

Genotropin and Regina.

( Regina drew this Picture to my sister Sija today) I have to ship it to her. I am not sure what inspired her, but I love it. It is very interesting piece of art. :)
Regina has been on Genotropin ( growth hormone) over a month now. She really does not mind shots and it is not hurting her. HOWEVER, there are few side effects that are bothering me, and I hope to get answers to my questions when we go to memphis this upcoming sunday ( we will get there at midnight on sunday and get back to OC, on tuesday afternoon).
Anyway , here are the side effects that I think Regina is having.

• Constant Headaches
• constant stomach aches
• feeling "shaky" at times, mostly before bedtime
• heart beats faster ( she tells me that her heart wants to jump out of her chest)
• increased birthmark growth.- suddenly seems like birthmarks are increasing in size and popping up one after another
• SHE IS VERY, VERY moody,
• VERY IRRITABLE.
• VERY hard to handle
• sudden changes in her mood, ( cryes one moment, and then she is suddenly fine.
• Little things drive her out of her element- I take her empty cup away, and she will run after me and scream on top of her lungs like I am murdering her..... etc.
• Increased coughing at night ( one of possible side effects)
  

So here you go. I am pretty sure that tummy and head pains are caused by meds, also- she might be little depressed, since I am not the "best" mommy at the moment. I expect to much from her and that causes some stress between us.... and Gabriel sees it and uses it to his advantage....

If I got payd to do my job as being mom- I'd be millionaire......

Halloween...

My front yard.

today we went trick or treating. We just did our street , which is about 50 houses and that is it. My kids are not really candy lovers- they love plain M&Ms, strawberry lollipops and skittles and that is it. But of course this year we did not get any of these candys and they were dissapointed. lol Lots of reeses cups and other nutty treats that they dislike. So I think I am just going to send most of that candy to estonia. ( about 3 lbs). I told my kids that if they are going to leave candy outside Candy fairywill come and leave them 5 dollars. They were more than happy do to so, so tomorrow when I wake up I have to remember that Candy fairy visited us....

Ok. About costumes- Regina was Ariel and gabriel DUCK. lol He is funny. He does not like superheros or "big time kid stars" he just wants to do his own thing. Good for him for being different. :)

Pictures later. I just have way to much in my mind right now ( well, I ate about 15 mini almond Joys- my faves.....) and Now I am trying to figure out how to stop tat candy to crawling straight to my thighs..... pure processed cancerous sugar..... yuck, but I still like it.

(Riley, Regina and Devin)

AND , if you guys have some good advice what kind of TV to buy , I'd be more happy to listen to your advice since my TV downstairs. ( toshiba) made a blasting sound and went black and now all I can see is red flashing light ( I can't turn tv on or off ) . So now I have to spend my eveinings and days in my bedroom watching 10 locas channels that have commercial brakes same time.....duh...

Regina and Thanks and giving.... CHECK IT OU!!!

Check out My girl Regina on St Jude Thanks and Giving page :) Isn't she sweet ??? How can you not care if you listen to those cute sweet voices. :)
http://www.tg.stjude.org/Patient_Stories/Patient_Stories_Home.htm

Ride for kids

Thank you Kathy for inviting us to such an cool fundraiser event. :) Regina and gabriel had lots of fun, and so did I. Since, I do not want to rezise my pics down to some crappy quality, I give you my shutterfly album, where all the pics I took are stored. I hope you can view them. But yeah, not that I am in blogger beta i can not post my beautifl large filed pics because blogger says so.
http://share.shutterfly.com/action/welcome?sid=8ActWTNq4ZuGJ0

Busy day

Regina and her New glasses :)

Regina Doing Math- SOmetimes you just haveto use toes to add and subtract. :)

Antigens...

Banana
Corn
Egg
Malt
Milk
Peanut
Pears
Soyean
Sugar, Beet
Sugar-Cane
Wheat
Yeast-bakers
Yeast Brewers
Grass Miz
House dust
Super Cat
Mite mix
histamine
Serotonin
eucalyptus
palm
Ragweed, Plase
Sage, coast-

These are 23 antigens Regina is receivin now . Of course I do not have to inject her 23 times- it is all in one little bottle and I have to inject it 3 times a week firs 3 months andthen twice a week and then once a week and then maybe once a month... ANd most important thing- shot does not hurt- niidle is tiny and with press of a button it is automaticaly injected in. So fast and painless- it costs us 85 dollars per month. So I hope this therapy will help with her energy levels, she will get her taste back and we 'll see what else may happen :)

Allergies.

Today I took Regina to get her allergies tested. . They tested 27 differet things. Tomorrow we have to go back to get the Reading, but so far- MILK is worst, PALM trees ( no wonder Regina did so well in estonia and China), Soy products, pear, bakers yeast. Pear is her very fave fruit in whole wide world. :(:(:

Anyway, we are going to add one more shot to her Growth hormone. AND this one is painless and faster than GH, I have to give it to her 3 times a week and when she gets these shots, she will be able to eat EVERYTHING and drink EVERYTHING and LIVE happily ever after. :):) I just hate that I have to put her though so many shots, but I really hope that one day she will apreciate what I am doing now and sees it as a good thing. :):):)

I will let you know more about her testings tomorrow. :)

D

We learn something new every day.

AND i learned today how to give Regina growth hormone shots. It is not as bad at it seemed at first. Nurse from Home heatlh systems came over and thought me how to do so. I gave Regina her very first shot and she smiled at me and asked- that was it? because she could not feel a thing. :):):)

OK. I am a different story. I was sweatin like grazy the whole time. I am still sweating. I was so nervous, I thought I am going to pass out. At one point I turned white as a ghost, but I sat through and did my thing. :)

:(

Regina and I are really sick right now. Reginas cough started about week ago, but today she is doing really bad. I have a cough and sore throat and mild fever- for me it started 2 days ago, but hit much harder. :( No , you tell me How I am suppose to take care of healthy 5 year old, really sick seven year old and myself, when I have no energy to do anything. We went to see doc and got antibiotics - I am not even sure what our diagnosis is. It is so hard for me to hear her cough. :( Poor her. :(

Short update.

Regina saw her eye doctor today. ( second time during 2 week period). You ask , why Is she so special that gets to see the world greatest eye doctor so often? But because doctor saw someting in reginas eye last time ( about 2 weeks ago), and he wanted to have more detailed check up.

He told me that Regina has scarring in her right retina, but he did not want to scare us last time and give us some "nonsence" information about ( like , it might be tumor etc). IT IS NOT. But scarring is there and it could be because of chemo, or surgery . or could be because of something else. So we have to make apointment with other doctors to get second opinion. ( I guess I am going to call St Jude and ask them to make opometrist apointment. :)

Regina also got classes- She is farsighted ( sp) and needs classes for reading and computer work. She chose most expencive "girls glasses" Barbie ones. lol Luckily insurance covers 125, I had to pay leftover- 80 dollars. SHE better wear these glasses. :)

Legoland.

I love surprising my kids. We knew( my dh and I ) That we will be going to legoland today, but we did not tell Regina or Gabe anything about it. I knew, that If I told them, They will start missbehiving
So, around 10 am I packed my backpack and told them to get ready and then we started 40 mile ride to San Diego. We had so much fun today. We took rides, played with Legos, ate expensive lunch (kids meal in burger joint was 7 dollars lol). Kids played with water, argued with us which ride to take next. To bad that it closed 5 pm. There was 3 more rides we wanted to take, but sadly, we did not have time for that. Maybe next time. J I also wanted to visit gift shop, but since my DH had to go back to china, then we just left 5 pm. And probably saved about 50 dollars. Lol.

Now it is me and kids again and I do not like this not one bit. With Regina’s growth hormone and other little issues, my mind is going crazy. I have a really bad feeling about this. I remember when Regina A L M O S T started chemo and radiation here in CHOC, I had the same feeling. I just knew that CHOC is not right for her and thanks god to some good friends we found St Jude. NOW, I am faced with this decision that can possibly harm her. Of course possibility is small but it is there. My issue is- Do I want her to start growth hormone and “possibly” expose her to bigger possibility to second cancers, or do I want her to be short and “chubby” and she is still in risk but in lower risk of cancers return. (Do not laugh mrs K.B. I know my wording is bit off but this is how I feel). Anyway, her meds are here. In my refrigerator. I emailed one of St Jude docs, but I still have not heard back from her. I hope by Monday to hear from her, if not I have to go ahead and start her treatment. Even Reginas doc, told me that GH seems like a great idea, there is not enough research to support that it will do any good for Regina ( Kathy, you told me same thing, maybe you want to become our dd doc- You know how to take temp, and look into ears, and then just nod and tell me that , YES, she has lots of wax in her ears---;) )))

Then I made appointment to get her allergy tested. She has been sick, but not really sick –sick past few months. SO I am suspecting there might be something in our house that makes her sick ( maybe candles, scents, oils, perfumes etc). I just got questionnaire and filled it out. Way to many questions to answer. But I hope it is worth it.
http://www.wellness-resource.com/mission.htm

Chilis

I know how much you all love Chilis Restaurant. :) Well, on monday you have all chance to help raise some money for St jude. Chilis restaurants in nationwide are having a St jude fundraiser, where all the proffits will be given to St jude. So go and have some Monday Night fun ( 25th of sept). Color some chilis and eat awome food. ( Chilis is Reginas ABSOLUTE favorite, and her fave food there is Cheese Pizza ). On 19th , we went and had her Birthday dinner there with our close friends and kids had lot of fun. :)

Happy Birthday To You

Happy Birthday to you
Happy Birthday to you
Happy Birthday, Dear Regina ,
Happy Birthday to you.

Reginas Birthday in on September 19th , but we had a party for her yesterday. It was a very cute party. We invited about 18 kids ( Regina Told me who she wanted to invite) and I sent out invitations. Everybody showed up and Oh boy, Reginas Momma was one busy woman trying to keep everything under control. It was pretty easy since kids listened to me pretty well, Only thing they really did not care about was my rule - NO FOOD OUTSIDE OF FAMILY ROOM. lol so after all the kids had left i found unfinished slice of pizza under my living room sofa and chocolate cupcake crumbs all over the place. But at least Regina had lots of fun and that is what matters. :):):) I also had "emailorder" Princess. lol She was very pretty and kids loved her.

Thank you Angel Carol :):):) Regina is one lucky girl to have you in her life ;)

And the reality finally kicks in...

I received first package with Reginas growth hormone (stuff). Genotropin Pen 5, insturcional dvd, needles, swabs booklets, bags to store. etc.
http://www.genotropin.com/delivery/pen.html
I am not likeing what I am seeing. Of course meds are not here yet, so i really can not tell you how Regina likes it, but we watched dvd together and she was disturbed. She started crying and had horrible panic attack. And of course I had to have one with her because I had no idea she had it in her. I was scared out of my mind because she was just screaming and could not stop. So after 30 minutes of screams she finally calmed down and told me that she is very upset and that I am bad mom for doing this to her. :(:(:(:( We did more talking today and she promised that she will give it a try. Oh poor her. :( I do not blame her for not being upset over it. Pen itself is very fancy and hip but the action around it sound way to complicated at first. I feel like I WILL NEVER GET IT. lol ( just like I did when I had to learn how to flush her central line and how to change her line dressing). But what choice do I have??? I have to deal with it, and I have to learn to administrate it right. Anwyay, when I get meds and I give her first shot, I tell you for what I really think about it. Until then - i just keep goosebumps all ver my body......

Endless summer...

On saturday we went to Newport Beach-
The Orange County Friends of St. Jude
present the Fourth Annual Event
“Endless Summer”
Saturday, September 9, 2006
Newport Dunes, Newport Beach, California

it was very cute fundraiser (sp). Endless amounts of coctails and food - and more people drank, more generous they got. So I guess It was one awsome project :) We met one St Jude family from Riverside area. Their daughters name is Elizabeth and she is 8 years old. Her diagnosis is Osteogenesis Imperfecta Type III, also known as the brittle bone disease. I wish them all the best. :) When her dad and mom were giving a little speech I just teared up. It was very seweet. :)

Gabriel and his new friend were building sand towers and defeating evil all night long. It was nice to seeing gabriel playing "Boy " games for a while.

I am still kind of confused by all this...

Kids have been in school for 3 days now. I had to fill out way to many forms and write quite few checks . Anyway school is from 7.40-2.07 Gabriels school is from 7.40 -11.07 and after that he is on K+ program. SO I filled out lunch forms and submitted them. On tuesday we were told to send money to school with kids for lunch- which I did. So today I asked Regina if she had lunch in school today. She said no because she did not have money with her. I did not send money with her since nobody asked me to do it and I thought they allready started the prepayed lunch thing. She tells lunchlady her number and she gets lunch, but I guess not. Now I feel bad because I only gave her very small snack and when I picked her up she was hungry. Poor, her- stupid me. I have to start asking more questions. And stop assuming. Then other funny thing- I sent lunch money with gabriel because I forgot to fill his lunch application but when I picked him up, he told me that he did not eat his lunch since he did not have money. I GAVE HIM MONEY, I put it in his lunchbox and I told him that money is there. But he forgot .... I just have to figure out how this all works.

I payed for 24 lunches for both of them. SO I do not know what happens when that money is spent, are they going to take money off my credit card for next month and then for next.... so confusing.( at least for me and since it is my first year to do school lunch - ju just have to excuse my stupidity. :)

Gabe and Regina are liking school. Gabriel have been behaving well and listening his new teacher. Good boy. Regina is also doing great, but when I ask about school I get this- Mommy, I really do not want to talk about school, nothing interesting happened.... duh...

And..

my house is empty. Regina and Gabriel started school today. I woke them up 6.35. fast breakfast, get ready and OUT. I thought I would feel just fine- you know , kids are out of the house, I have time to do things that I like.... BUT I feel sad that the are gone. Gabriel was so sad this morning. He did not want me to leave. He just kept repeating- Mommy stay with me, Mommy, stay with me, mommy, stay with me. But mommy did not stay. Mommy had to leave.

Regina did just fine. They had flag ceremony, went over rules and they were ready for classes. : )::)

I am not sure if I mentioned this to you guys. Last week I got a call from St Jude. I was told that Regina has to start growth hormone therapy since her body is not producing any growth hormones ( or very little). I was told that without growth hormones she will be around 4f 4 in ( around that) and it is way to short. They want her to be at least 5f2in. Nick and I are both tall and our families are tall, so we have to make sure Regina gets to be tall eather.
She will be on daily hormone shots for 10 years. So when she will be 17 years old, she will finally be able to get off the meds. But if it helps her, I just have to do it. It really is not about me. It is about her and her well being. :) So that is all about us.

I have 5 and 1/2 hours before kids get back home. 1 hour of cardio, clean up house, clean closets, do grossery shopping and ...

Build A Bear..

REGINAS FRIEND HEATHER turned 7 !!! We were invited to celebrate his birthday in Build A Bear. I think it was cute party. :) Regina had fun But Gabriel was really shy and quiet at first and wanted to get out of there , but finally, when it was time to leave the place HE WANTED TO STAY. I swear, I do not understand what is going on with my boy....

After build a bear we all opened presents, had lunch and ate cake at the same mall. Regina got really sad since she had very hard time sharing Heather with others. She does better when she is one in one with Heather, but when there are other kids around she just feels sad because she thinks Heather does not love her enough. :( So I tryed to explain her at home that it was Heathers birthday and all those kids were heathers friends and Heather loves all of her friends equally. :):):):):)
Now guys send some good reovery vibes on your way- Heathers mom is haveing surgery on this coming friday. She really does need to recover fast because she is teacher and she needs to go back to her school week after surgery( Right B???)