Olivia update

So this week Olivia did all her pre-op tests for her operation in two weeks. She did great. We have been doing stuff like this for a while and this time around I had all sorts of epiphanies. For instance, Stan is an Olivia hog when it comes to hospital stuff. Every time she gets put under only one parent can be with the child, and Stan always goes. I think this time I let him go because he was getting so emotional and sensitive. He always gets teary eyed/ cries when she goes asleep. I say things like "hurry she's only out for 10 minutes lets go get some food" (Because we always have to be at the hospital so early and we never eat breakfast), then Stan will say something like "that is so insensitive, YOUR daughter is under and you want to run to the hospital cafeteria." It is true, all the other couples who's kids have been sedated are crying and holding each other and talking about feelings. I am not going to lie, it is sad... I think I would be sadder if I actually got to see it for once but on my end I say "see you soon" and then wait and then Stan comes out and that is it.

Olivia and I before she goes in to get put out

You know Stan is getting too sensitive when he goes down to the gift shop and buys books like "butterfly kisses" to read to Olivia when she comes out...this of course will only make him cry MORE.

Waiting....

Not going to lie, cool hats, and just about ready to go!

When Olivia started to come "out" the nurses started calling her the squirmer, because she kept inching off to the edge of the bed (a lot like a caterpillar), Stan seeing an opportunity for injury climbed into the bed to stop the wriggling and held her until she was coherent.

Olivia, NOT excited about he Vegemite sandwich option, but she had to eat and wee before she could leave so she ate it!

So a quick summary, Olivia had a VCUG done (we do these about once a year ) Here is a good explanation in case you are curious: http://en.wikipedia.org/wiki/Voiding_cystourethrogram , and she also had a 3mm camera go up her bladder and urethra's to investigate the scarring and what the walls looked like and to see the size of the openings of her urethra's. The picture results and VCUG grade merited a procedure called a urethra re-implantation: http://www.ucsfchildrenshospital.org/education/ureteral_reimplant_surgery/index.html

Last year (in England) we had a sting operation, which was successful but the fluid was reabsorbed into her body and her reflux came back. Anyway, we have been meeting with urologists a lot, thinking this was the problem and that we were treating the cause but a week ago we had some exciting news after meeting with a gastroentologist and Olivia's "failure to thrive" (grow). He discovered that she is missing an enzyme to correctly break down poo and that her intestines are packed full (up to her stomach) which is why she doesn't eat (she feels full all the time). The gastroentologist also suggested that since her intestines are so full they may be pressing on her urethra's (behind her intestines) thereby making in difficult for her urine to drain, possibly even pushing it back up to her Kidneys.

It makes sense.... Breast milk has this enzyme and I nursed Olivia until she was 6 months old. Between 6-12 months she was on formula and baby food and was probably getting all clogged up. At her 12 mo apt she dropped in weight and 3 months later had her first urinary tract infection. The gastroentologist put her on a laxative for life (she takes about 1/8th of a full child's laxative/ day) and she can't eat certain food that are difficult to break down like potatoes, bananas etc... we meet back with the gastro guy in 4 months to look at her intestines and see how she is doing with weight gain. From this discovery Olivia has a good chance of developing bowl cancer (which we will be looking into) but overall the discovery is good news and we are excited to see her progress.

If you are thinking, "does she still need the operation on her urethra's if she clears out her intestines?" the answer is yes. This is what we were looking at while at the pre-op and due to the damage on her kidneys she needs something NOW to save her kidneys (because we don't want to get on a kidney transplant list) and it is going to take time to nurse her intestines back to normal. If you have questions email me, especially all my dr. friends.

Ps. Sorry it took so long to write the blog update I have had NO time. In fact while writing this Thomas took a green fabric marker to two rooms of the house and got the walls, windows, bedding, so consider this a special treat!

Chinese New Year

So this year Chinese New Year landed on Valentines day...and out of the two celebrations I think the Chinese New Year won! It is the year of the Tiger and apparently Australia celebrates Chinese New Year more than any other country outside of Asia. On New Years Eve we went down to Darling harbor and went through the Chinese Tea Gardens. They were magnificent and so peaceful even though they were positioned in the middle of the city, the trees really made you feel secluded.

I learned a lot about Chinese new year. For instance, it is a time to visit family and call relatives. The new year has to do with the lunar calendar so it landed on Feb 14th because that is the day of the new moon. The celebration lasts for a while (2 weeks?) until the moon has gone down some. On New Years Day the children will get dressed, eat and then come and bow before their parents. Their parents will give them advice for the upcoming year and then give them a "red envelope" this has money in it. Olivia has a bunch of friends who actively celebrate this and follow these traditions and she told me (New Years Eve) while I was washing the dishes how excited she was for her red envelope...I looked through my house and realized I only had white ones! Stan said he would still give her some advice if she wanted :-) Next week we are watching the dragon boat races and going to the Chinese twilight parade...and will see all the fireworks set off, it should be cool! Plus my neighbor is taking me into China town to eat Yum-cha (I don't have a clue how to spell it, but that is what it sounds like).

It was so easy to forget that it was also Valentines day. The schools do not do any activities for Valentines day and the stores don't really hype it up. Stan still pulled out all the tricks by ordering me flowers and chocolates! Thanks Stan!

Little Olivia

So in case you didn't know Olivia has not been doing too well as of late. Quickly I will rewind her medical history to bring you up to date. Olivia was a pretty normal sized (7.6lbs), healthy kid when she was born. During her 12 mo check up she had a sudden drop in her growth (usually you have a positive curvilinear growth pattern) and she suddenly took a negative linear pattern...not even a small curve. Her pediatrician thought it was so weird he had her have a bone x-ray to see if she would be able to grow normally. The tests came out fine but three months after that, she had her first urinary tract infection. This was routinely investigated by a VCUG which showed she had reflux in both of her urethra's (her urine goes back up to her kidneys instead of down to her bladder), but there was no scaring on her organs so the doctors wanted to wait to see if she could grow out of it. By the time she was three she was having lots of UTI's and her reflux grade had moved from moderate to severe; not to mention she was on the strongest and most expensive (I might add) preventative medicine available, which she was taking on a daily basis.

Olivia with a UTI on her three year old birthday. Day one (grumpy face) and day two doing her (an attempted smile) IV treatment.

When she was 4 we moved to England, they took one look at her and scheduled her for an operation. It was the best medical experience I have ever had. The hospital was absolutely beautiful, the doctors were great and they gave her something (for free) that our US insurance companies had been dodging for a while, hoping she would grow out of it! At the end of the operation she no longer needed the medicine and she had no more reflux. However, she did have scarring on her left kidney due to the multiple infections while in America and the first part of England. We were Ok with this because you really only need ONE kidney and the right one was still scar free!

Everyone told me scary stories about the British medical system...I would have to say I disagree!

Only a little scaring on the left side!Right after her sting operation (almost two years later from pictures up above)

Anyway, one year later we moved to Australia and Olivia started to get infections again. We had to wait a while to get an appointment, but we were able to get hooked up with the top pediatric urologist at a private hospital in Bondi to check out the problem post operation. He ran some tests and we did some scans and found out that her right kidney is now damaged as well. Today I went in and we decided that she needs to be back on preventative medicine so she doesn't further damage her kidneys AND he is suggesting we do a re-implantation operation (where you cut off the urethra's and re-attach them to the kidneys so they drain the urine instead of shoot it back up). We are going into the hospital in one week for another consultation/ evaluation and then should be doing the pre-operation tests in two-three weeks. For this, Olivia will be under anesthetics and they will be taking a camera up her bladder, through her urethra's and into her kidneys. They will also be doing a VCUG to see if her reflux has come back.

On a side note, since all this started to happen, Olivia has not been able to gain weight. Mary is two years younger and is the same height and weighs more that Olivia does. Olivia is well below the national growth charts (weighing in at 35 lbs at 6 years old) and the ice cream, hot dogs, and protein shakes "diet" just don't seem to work. We are also working with another pediatric gastroenterologist to see if she is not absorbing her food, but that is a side hypothesis. I talked to the Doctor about Olivia's growth and he told me after we correct the reflux she should start growing again! He said he has seen small child after small child time and time again and they always start growing once the problem is corrected--so here is hoping... we should have everything done before May-keep you posted!

Brunette

So there are some funny things that happen in Australia when it comes to me and hairdressers. I don't know if it is my accent or what but I can NEvER convey what it is that I want done...in fact it is usually the opposite. For instance, I am a blond and have been my whole life but I still get highlights done to bring out the light blond I lost during childhood. My hair is a honey blond NOT barbie blond and whenever I get highlights done I say "DO NOT MAKE ME A BARBIE DOLL" and the Asian ladies nod, smile and make me a Barbie doll (see picture below).

Ok, see the roots, honey blond in this pix...that is all I want...not too hard right?

After about 6 times wrong, I said "I want to go DARKER!" I want my hair the color of my roots (not lighter) because I don't want to have to do this all the time. I say this and no one listens to me. However this time my hairdresser was Italian (not Asian) and she said--yes, yes, dark hair is very beautiful! I am thinking, good--she understands. So, 45 minutes later I am dark dark Brunette/dark red...a little too red...almost purple red. I didn't like it but it was explained to me later that the only way to get it OUT was to use bleach on my hair to get the color out (and who knows what color my hair would be then) and then dye it on top. I opted to NOT bleach the hair but instead to experiment on a few strands to see what would happen. The result was light brown highlights to try to break up the red and I have decided it is fine...a change from blond. Stan likes it and informed me that he dated more brunettes than blonds anyway...really? Well then , the only real problem will be in three months when it grows out :-)

Note: since going brunette, my hair has lightened up a lot and I like it, the red has even faded quite a bit. I wish I had pix to show you the improvement but this is it 1 month later!

First day of school!

So in Australia you start school the week after Australia day. School runs from the end of January until the middle of December. The year is broken up into 4 terms and we get two weeks off in between each term. I did the math and figured out my kids are missing out on about 4- 6 weeks of summer vacation that they otherwise would have had in the USA...and I wasn't counting any snow days.

Olivia is in Year 1 and has Miss Wong who she calls miss Swan. All the girls call her this because (1) it rhymes and (2) because she thinks her teacher is graceful and beautiful like a swan. She is a new teacher, young and really enthusiastic and happy. Olivia has to wear uniforms to school and her school also has a no hat no play rule. Once she forgot her hat and she came home and told me that they said "no hat, no play, you can't have any fun today"... I was thinking, what kind of a rhyme is that? But, it is true, the kids have to stay inside if they don't have a hat.

Mary is in preschool this year (just the one year before kindy). She has two teachers a girl and a boy and she is in heaven. They have a big yard to play in, a sand pit, obstical courses, singing time, painting, play dough, toys and nap time. It is M-W from 9:00-3:00 and Mary is pretty tired at the end of they day. I packed Olivia and Mary's lunches identical and Olivia came home with left overs and Mary asked me for more food in her lunch box at the end of the day.

Thomas is my 18 mo baby who stays at home with me. It is so fun having one baby at home with me while the older kids are at school. I can get all sorts of errands done and KEEP the house clean (at least while he naps) and have time to work-out and even take naps. Thomas is a crazy baby. He can swim with a little foam pad strapped to his back....Serious goes the length of the pool and back. He walks up the stairs without holding onto anything and when he does the stairs he goes a whole step each time without bringing his feet together on the same step. He is so tiny it looks really funny. He still doesn't talk much with the exception of BUG!...which he yells all the time, and Ball and Baba. I know he has it in him though because I have heard Popsicle, dinosaur, and bubble bath...but growling seems to work so much better for all three. Serious, boys are so different from girls it is hilarious!