Saturday, September 23

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

Friday, September 22

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. :)

Monday, September 18

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 ;)

Wednesday, September 13

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......

Sunday, September 10

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.

Thursday, September 7

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...

Tuesday, September 5

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 ...