let the summerfuntime begins.
milo has one month of summer school at his Early Start School and after that he will move on to a new preschool. its going to be tough since he has known all the teachers there since he was 8 weeks old when i started baby class with him. but at least matilda and i have started baby class so i will still get to see the wonderful teachers. i think it is me that is going to miss the school more than him. but thats not the point of this post, its about summerfuntime. my hubby and i started to generate a list of things we will do with milo and matilda during this summer. i cant wait and i will share some of them with you for those that are local. yeah.

happy summerfun time to you and don’t forget sunblock and don’t forget to say shoo shoo mosquitoes.



ONE.Shinzi Katoh’s sad little bear mug is so sadly cute. TWO.these swoop bags are just what i need to organize all of milo’s toys. THREE.i am a sucker for scalloped pattern + for Chloé sunglasses. FOUR.i know i posted this Lauren Moffatt dress but i just had to since i want it & its a perfect dress for those july 4th bbq’s social events. FIVE.i love Hello Kitty & i wouldn’t mind having this dock speaker on my desk or even in the bathroom when i am doing my toothbrusing facewashing. SIX.cupcake mixer. SEVEN.i didn’t know i always wanted a raccoon tee until i saw this. EIGHT.i want a break from my usual red polish and purple is my favorite color. NINE.i recently discovered Kork-Ease and made a purchase and now i want this as well. TEN.i haven’t wore a watch for so long that i don’t even remember,but i saw this and i want it. i cant decide if i want black or white. ELEVEN.i like anything that i can interchange – RAYBAN.


all the fathers (a.k.a dada) shall have extra hearts (a.k.a love thing) around them today..





i would love to make this into a wrapping paper or fabric. kids with glasses ROCK.

heres a bit of milo’s update since my last report after his recent procedures. milo is definitely doing better. he still has his good/bad days and we haven’t yet had a day where he hasn’t complained about his eyes. we actually went back to his glaucoma doctor last week to check on his good eye (right eye) because it was tearing a lot and it was still swollen. it really shouldn’t be tearing since he had an eyelid epiblepharon to eliminate this problem. it turned out that he might have caught an infection from the procedure so we were given an antibiotic eye drop to give him for both his eyes 3 times a day for one week. and aside from the tearing he has been super sensitive to lights which he has never been. we were always asked if he is sensitive to lights due to his glaucoma but it was never a problem until now. the doctor really didn’t know the reason and couldn’t tell us much since it was a battle to get milo to have his eyes open at the doctor’s visit. we just have to keep an eye on his eyes and if anything, he would need another EUA for further exam.

the antibiotic eye drop is working very well. his right eye is no longer red and the tearing has gone down drastically. BUT he is still light sensitive. we pretty much have the blinds in the house closed when its uber sunny. when we go outside with him he closes his eyes until we are indoor. milo’s ECE teacher gave us a pair of sunglasses to put over his glasses and they help especially when we are in the car.

and here comes another whole new thing on top of all this drama with milo since his first prosthesis fitting back in april. with all these new recent activities and trauma, milo likes to cry all the time about everything and gets upset pretty quickly and often. it usually starts with him complaining about his eyes hurting and from that point on, its all about him not liking this and that and all he wants to do is go to sleep. its a constant battle. we cant tell anymore if he is trained to cry so he can get what he wants (because thats what we did when he first had the horrible experience with his prosthesis to get him to calm down) or if he is really hurting. we know that there are times that he IS in discomfort/pain but sometimes he can shut it off so quickly that it makes you wonder. i feel torn at times because i want to give him credit for all the crap he has been through with his eyes his whole life, but at the same time, i cant have him acting up and using his eyes as an excuse. it is a very fine line. SO, we are still educating him about his eyes and all that is going on and what he can do to help his prosthesis to feel better (i.e. – blinking his eyes when he wakes up so that it wont feel as dry or i like to use the phrase – you got to blink your eyes to wake up your shell.). we are being even more patient with him especially when it comes to his eye drops because we want him to be in a good mood so that he realizes that they are not horrible. i got him to believe that eye drops feel like a tickle to your eyeballs. we talk about his various emotions and making sure that he knows we acknowledge them and kind of talk it out with him every step of the way. unfortunately with milo, we are always making good progress on his milestone (i.e. sleeping habit, eating habit) but then we always have to start all over because of a bad doctor’s visit or some eye changing event. its hard. for him and for us. we want to just give in and say yes to everything but at the same time we want milo to learn to grow with his eye conditions as a regular thing since he has a whole life of eye events.

if anyone out there wants more details on how to do eyedrops on your kid, please feel free to ask me because i can share my tricks with you.


it was matilda*’s turn today at the doctor. we went to see a plastic surgeon at Stanford about this EarWell device that our pediatrician told us about. we read an article on it hoping that maybe matilda would be a good candidate but it turns out that EarWell doesn’t work with kids that have microtia. BUT i want to spread the news of this device to everyone out there since this is very new and a lot of people don’t even know about it, including doctors. i told matilda’s hearing aid teacher and she will spread the word for me with her colleagues. i am hoping that all the people that does hearing screening in hospital will be educated about this as well since early intervention is the key. spread this so children can benefit. thank you.


*please see this post for history of my kids.


milo’s left eye is smaller than his right eye since birth and the retina is detached (hence no vision). we were always told that at some point (roughly before the age of 5) he would need to be fitted for a prosthesis so his left side of his face will grow equally with his right side. the prosthesis is to stretch out his left eye since the face grows around the orbit of your eye.

this is a picture of him when he was 4 months old & his left eye is not as noticeably as small as his right eye.

so in his march EUA* (exam under anesthesia), his ocularist tag along to look to see if he is ready for a prosthesis and indeed he was. milo had his first fitting on april 20th and my husband and i were feeling pretty anxious. the process wasn’t as bad as we anticipated. i did have to hold his arm and head and my husband was on guard for his legs in case he kicks. milo cried. it was over pretty quickly. (imagine an evil** version of a contact fitting) we left the office after awhile and milo seems to be okay with it. that very night he went crazee and was screaming and crying for over an hour and finally went to bed without his dinner. the next day he was fine and even went to his regular swim class. after lunch he screamed and cried and only this time you could tell that he was obviously bothered by the prosthesis. in summary, we had to take it out. the ocularist gave us this tiny suction cup to use. it was hard to get milo to listen to us. we kept telling him what we need to do to make him feel better but he just wouldn’t listen because he is too bother by the discomfort. unfortunately we had to be sneaky and we had to do it when he was asleep. it was horrible of us and we were the wicked evil witches but we had no choice. after we took out the prosthesis, milo had both of his hands cupping his eyes for a long time. it was his natural human reaction to the trauma and his way of protecting his eyes while sleeping. it was heartbreaking. we really want to say frack this whole prosthesis to pieces because its not worth it. milo is SO traumatize by this and he still has his whole life of doctor visit and people looking at his eyes and how would he ever deal? the hard decision of parenting kicks in on this because if we don’t do this now it will be too late. its now or never because his face is still growing.


oh. a little history of the prosthesis. milo has an actual left eye so all the ocularist gave him is a clear scleral cover shell. no need for fancy painting of an actual eye on it.

the shell is placed in the cover part of a contact case (the actual part for a contact is too small for his shell). don’t be fool by the bubble, the actual shell is the rounded triangle. the one dot represents the top part of the eye and the two dots should be on the bottom part of his eye. this is just a easy way to know if the shell is turned around in his eye.

on may 24th he had his routine EUA, a lower eyelid epiblepharon*** on his right eye, and second fitting of his prosthesis (the ocularist made the shell a bit thinner this time). that same day (tuesday), he was great. the second day (wednesday), he was okay with the prosthesis eye and was only upset about putting ointment on his stitches on the right eye. the third day (thursday) was bad. the night before he was crying a lot in his sleep and in the morning he refused to open his eyes and was like that until the next day (friday). on friday he was still refusing to open his eyes and finally we took him in to see the doctor because he told us that its his right eye that was hurting. the doctor checked it out and said all was well and the stitches are healing nicely and he is good to go. that night he finally opened up his eyes and that was the best feeling my husband and i had. we were SO relieved and milo was so happy. the next day (saturday) came and milo did not open his eyes again and it was not until the evening he opened them. this pattern went on and is still going on. we now know how to handle it and how to talk to him and how to get him to do it.

milo refused to open his eyes and insisted on sleeping on the rocker.

the thing is, throughout all of this, we talked to him the whole time about whats going on and how we know how he is feeling and how we are there to help and what can we do to help and we even told him about the shell in his eye and how it does get uncomfortable especially when waking up because it gets dry.

i will never know what he is feeling. it does break my heart to see him like this because i cant help him. all this reminded my husband and i of all of milo’s conditions and how he has to face this for the rest of his life.

milo is truly my superhero of all time. i am so proud of him. he has been so brave since day one, literally.

he is better about opening his eyes each day. our ipad is loaded up with his Pixar buddies – the TOY STORY gang and CARS to encourage him to open up his eyes. they are always there when he wakes up and before he falls asleep. they are on a as needed basis. milo likes to show people his shell and we encourage him to do so. we talk about it with him often just like how i always tell him he has two very amazingly amazing eyes, right eye is the big one and the left eye is the small one.

BUT HONESTLY: i wish someone can tell me how long it will take his eye to adjust to this giant plastic shell???!!!! its like a turtle shell on your eye.

*milo has been put under since he was born so that they could look at his eyes without having him scream his lungs out. he used to get it done every 2 weeks and now its every 3-4 months. and this is mainly with his glaucoma specialist.

** evil because the prosthesis is insanely thicker than a contact. its hard and thick like TWO Lee Press-on nail and the size of it is bigger than your eyeball.

*** fancy term of saying that they need to fix milo’s lower right lid eyelashes since they are turning in and poking his eye. he actually had it done about a year ago and its happening again. sine this is his only eye, they are extra conservative and therefore they are fixing it, otherwise it usually corrects itself.


Tuesday, June 14th : PARCA day at the fair.
for people with developmental disabilities & their immediate families.
start time – 11am and rides will be open and free unti 12pm.

i never went but i signed up (thats right, you have to sign up here.)

i think it would be good for milo having that extra hour before its open to the public since he does get pretty anxious around a large crowd especially when there are lots of kids running around. he tends to step back, stay close to us and don’t really want to participate. its all because he does not have much peripheral vision on his only eye and things can get a little too much for him visually.

looking forward to this and i cant wait to see you + your family and your little ones.
and yeah for funnel cakes and cotton candy and all things sweets.

summer is here.