Saturday, April 30
Top 10 most frequently asked questions in St Jude.
How are you?-Great
How is Regina doing?- Great
Does Reginas hair grow back already?- look and see
For how long will you be staying this time?-For a week
Did she relapse, that is why you are back?- Now she did not, we are here for a check-up.
What kind of meds is she on now?- None, she is medicine free
Does she have her central line still on?- Nope
How old is she-5and half
Did you made her pink little hat?- No I did not, I bought it when she was about 9 months old. I bought it from Gap.
Did you have fun at home?- We sure did.
I really did not mind answering these questions, but I got little tired telling the same thing over and over again. Why nobody asked what is her favorite food now, and how is she physically doing( Dr Gajjar did ask that), etc. ? Maybe next time. Lol
Our first 3 month check up is over. It was nice to being “ back” and visiting with Doctors and nurses. I feel bad that I did not take time to visit B clinic, because Reginas favorite nurse practitioner Kathy was probably wondering why we did not step in. Sorry Kathy. Every time we had time to go over there Regina was ether ready to nap or drugged up. L Better luck next time.
Many more appointments to come, and many more questions to be answered.
Friday, April 29
Plese scroll down the page and click to ALABAMA- COLORADO. Regina should be on page 41( california). Also take time to read other kids stories. :)
Thursday, April 28
Regina is still sleeping. This time anestesia really wore her off :) SHe opens her eyes once in a while and tells me that She is really sleepy today. And she is great sleeper, and sleeping makes her feel good :) lol
Next time we will fly over to St Jude 1st and 2nd August :)
Right now, as I am typing this, Regina is in MRI room getting her MRI's for brain and spine. :)
She had to get poked twice, because first time her line did not flush, they had to take her IV line out and poke her once more. She did really great. Thank you Ms H for being so nice and caring. :)
Yesterday she had functional MRI where she stayed awake and very very still. Which she did. I was told that they have not seen 5 year old that still yet( not even her nerves moved)/ lol.
After her functional MRI we went to Target house where was Purina sponsored Incredible dog show. It was good one, but Regina kept telling me that these dogs are way to big. She rather wathc small dog show. hehe. Then she played with other kids on Target house playset and was upset when I told her it is time to leave.
She did not eat dinner, because it was Lasagna. When we returned to Target house around 7.30pm, she still told me that she is not hungry. Around 8.30. I told her to go to sleep , but she started crying and told me that she has not played her gameboy yet. I sayed it is to late and she did not eat her dinner, so It is time to go to sleep. Then suddenly she was very hungry. She ate banana and whole box of strawberry cereal( single serving one). And she forgot all about her gameboy and fell asleep. :)
Wednesday, April 27
Then there was somebody doing sandwich buffe for grizzly house families. It was nice. Even Regina had some "turkey", well, it was really smoked ham but don't tell her that.
Now it is 12.46 and we are waiting 2.45 to arrive because then she will have her first MRI( funcitonal one). Tomorrow she will have sedated spine and brain MRI.
Monday, April 25
Today Regina had psych testing. 2,5 hours. SHe did ok. Not as well as first time IMO. Because she just refused to answer lot of the questions like 2+2 and 2-1. SHe just sayed IT IS TO MUCH FOR ME. I want to leave now. lol. Guy who was doing the testing told us that she did pretty well for her age group. TOmorrow we have another 3 hours with him. We will see then how well she does.
MRI's are on Wednesday 2.45 PM
and Thursday around 8 AM. Until then we just do some smaller tests like Endocrine, and speech and O/T and A/T .
IT has been really nice meeting all the other families who happen to be here same time for check ups :) Best of luck to them :)
Friday, April 22
On Thursday we did a l o t of walking. To much , I think. At firs we Took the 15 minutes ride with worlds largest rotating tramcars at the Palm Springs Aerial Tramway from bottom of the hill to the top of the hill. Again, the view we had from the tram, and from the top of the mountains were breathtaking. It was so peaceful and calming. Nature, snow, trees- hiking trails and we hikers. My soul was feed. :)
Then, after 3 hours in mountains we went to Living Desert ZOo and Gardens. WOW, botanical Gardens were in full bloom. It was different kind of good experiense under hot desert sun. Cactuses, butterflies, wild cats, giraffes- all together, under one roof. lol. Within its 1200 acres youwill discover over 450 desert animals and more than 150 species including coyotes, oryx, zebras etc. It was really beautiful.
We were soooo tired in the end of the day that even coffee did not keep my husband awake. He fell asleep while drinking his hot starbucks. hehe
We had made plans to go out and eat Las Casuelas Terraza, because on the previous night we went out and had margaritas there( thank you Kathy for recommending that place) My husband , who hates hates hates coctails had one of their strongest margarita was changed man after drinking it. So we went to go eat there , but we had no idea that on thursdays there are these HUGE street fares with HUGE mass of people and the traffic is pretty much shot down and there is nowhere to park. So instead of Las Casuelas we went to Casino close buy and their food was ok.
Now we are back home, tired, but happy and I am extremely glad that we did this trip before our St Jude trip. I feel more positive and energized and happy. Now let s hope that ST jude provides us with the happiest news possible and the time there will fly by as fast as possible. :)
Pictures will be added later- I have to do some serious editing to get the pink glow out of the pics. :)
Tuesday, April 19
Regina is on Antibiotics to get rid of her herpes virus, and seems like she is healing very well. I also dropped off Reginas kindergarten registration papers , which means in fall Regina will start kindergarten. I am exited and worried same time. I don't know how will she do , or how she will get used to group activities again. She is spoiled to rotten by me and I think school for her will be tough at first. As she sayes- We will see!!!
But now I have to pack my bags and head to LALa land. Good night to you all. Tomorrow is another day and we dont' know what it brings with it. Hopefully better weather and lots of smiles and good laughs.:)
Sunday, April 17
….. Stay tuned for more….
Saturday, April 16
- 3 days ago she had fever 101,6.
- Fever triggered her herpes plugs
- Now her cheeks, lip, chin is covered with big red bubbly patches.
One more thing to take care off. Again, I called her doctor and waiting his directions what should we do next to prevent it spreading to her hands and arms( she had couple or pretty bad herpes HSV I infections in Memphis. Now it is back.
Wednesday, April 13
Monday, April 11
Sunday, April 10
Saturday, April 9
After Wiggles we went to our friends B party somewhere in San Gabriel(CA). Dinner was held in some chinese restaurant. Food was ok, but what ruined everything was - Birthday Girl found a Band Aid in her soup. After that we payed for our meals and left the place. Mood for me was ruined with that. I also had bowl of that soup- but before she found bandaid. Anyway- BOOOOOOOOO. Then we went to one asian Tea house where we ate birthday cake and drank some excellent tea, but waiter kind of screwed up our orders. Instead of Hot plum tea I got iced and then hot plum tea arrived and couple of minutes later another pot of Hot plum tea- lol - doubble order just for me. Tea was the best and cake was just right - if you ever ordered B cakes from Asian bakeryes, then you know that those cakes taste p e r f e c t l y right- not toooo sweet- just the way I like it. :) Everything is in right balance. Now we are home and ready to hit the bed. But the thought of eating soup made with USED bandaid makes me g*a*g.
Thursday, April 7
24 apr NW 116 depart OC 7:45 am
Northwest arrive: Minneapolis/stpaul 1:22 pm
Nw 558 Depart minneapolis/st paul 3:16PM
arrive: Memphis 5:15 PM
April 25th: 9am-12PM - Psych Testing
April 26, 2005:
08:45-09.00 Assessment and Triage
09.15-10.15 Endocrine Clinic Consult visit
11.30-12.00 Speech Consult
12.30-03.30 Psych Test part 2
02;45-04.30 MRI Brain SJMB03 Funcitonal MRI
07;45-09.00 MRI with IV sedation
09.00 MRI brain and spine with sedation
10.45-11-45 Sedation Recovery
12.30 No off Therapy
08.30-09.30 Procedure( LUmbar puncture)
April 30th Time to fly back to CA.
I am not very grazy about our schedule. I wish we could fly back on 29th afternoon insetad of 30th. But oh well, Now I know with what I have to work with our future apointments.
Wednesday, April 6
Anyway, now he will stay here until may 10th. He will stay until my birthday and then he will take off until Gabriels birthday in June.
I want to thank you for helping Gabriel and I raise money for St Jude. You know who you are ;) Remember 2 More days before I have to turn checks in. :) HURRY!!!! lol
Something really cool happened couple of days ago. Make a wish called and asked if Regina was interested in Wiggles. And since she is, we got 4 tickets to go to see Wiggles on Univeral Amphitheater on Saturday , april 9th 5 pm. I AM SO EXITED. SHE IS EXITED- EVERYBODY be exited with us. Tomorrow , after I finish with my parent hour in Gabriels Daycare, I will go out and buy us something Wigglish- so when we go to see wiggles on Saturday, we feel more festive. :lol ( I am going nuts, right???). When Regina heard that she has chace to go to sees wiggles , she ran upstairs and got her wiggles underwear - lol. Today we went to Make a Wish offices and I got the tickets. They have fancy office. Very nice and very busy and very clean and professional. lol.
OH, And yesterday We ( my DHand I ) we went out for dinner and movie, We ate On THe Border( mexican restaurante), and then saw Miss Conginiality 2. Movie sucked big time. I was expecting something better, but I did not get what I expected. I hated that Benjamin bratt did not play in this one. And Sandra Bulloc did really bad acting job. It just did not feel right. Yes, we got couple of laughs, but that is about it.
Tuesday, April 5
Monday, April 4
We have 4 more days before we have to turn in the checks . On friday big Trike a thon will be held on Tutor Times playground, where one of the trikers will be Gabriel.
Make checks payable to St Jude Childrens Research Hospital
Memo line- Regina and Gabriel Tan
Please bring, or send Checks to following address:
27715 Manor Hill rd
Laguna Niguel 92677, CA
(949) 290 6958
- . Remember, Cancer is the leading disease killer of American Children, and St Jude Childrens's Research Hospital is the leading Center for the Study of these diseases.( quote from St Jude Trike A Thon paper).
- St Jude is supported Primaly by public contributors
- St Jude researchers and Doctors are treating children with genetic immune defects and pediatric AIDS, as well as using new drungs and therapies to fight infection.
- St Jude is the world's largest pediatric cancer research center in terms of the number of patients enrolled and successfully treated. Since St. Jude opened in 1962 , it has treated about 20 000 patients from all 50 states and more than 60 foreign countries
Do I have to say more? I guess not. Your money will help save lives, and find cure. Please help :)
Sunday, April 3