Author Archives: nodesigns

DEAR WEE FOLK LOOKING DUDE, LETS MAKE THINGS HAPPEN.

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pretty much as soon as i recovered from my flu, the very next morning my mansomeboy (a.k.a. hubby) woke up with a mysterious swollen right foot and he has been home bound since he cant drive or stand and walk too much. he tries hard to help out with the kids but due to the pain and me telling him not to, its been busy busy busy. i used all this week to re-start potty training milo and let me tell you, i am so sick of hearing myself saying do you need to go peepee or poopoop in the potty (i even dream about it) even more than cleaning up our floor and washing his superhero underoos. its not going great but its not bad. i know i will succeed. (but a little part of me have to admit to the fact that wearing pull ups is SO much easier especially when you are out and about. they DO grow up too fast!)

milo also decided to have a cold on thursday night but at least he never got my evil awful flu. he had a check up with his ophthalmologist on friday and i had to update him with everything that went on with his eyes since march and he was wowed by it. we are holding off on getting him a new pair of glasses until his EUA on this coming monday because if milo needs a new implant valve then his prescriptions would most likely change as well.

milo is starting his new preschool on monday but unfortunately he is missing his first day because he has an EUA to check on his eye pressure. i hope his eyedrops have been helping so he will not be needing a surgery to replace his existing valve. we shall see. lots of things are happening and lets hope all will be good in the end and we can go back to our summer fun list (we kind of took a break since i got sick and then with my mansomeboy’s swollen foot).

matilda is too cute for me and she is growing up way too fast. her upper front two teeth are at the halfway mark and i noticed yesterday when she was crying that both her lower lateral incisor are coming in as well! OUCHIE BOOBIE i say! i have gotten bit too many times already. i am still waiting for her to have more hair because bangs is what i want to see on her cute little head.

AND
DEAR WEE FOLK, HERE ARE SOME THINGS I WOULD LIKE FOR YOU TO MAKE IT HAPPEN:
1. milo’s eye pressure is under the range of 20.
2. no more swollen foot for my mansomeboy & the doctor will say its nothing major.
3. success with potty training.
thank you very much.

Sincerely Yours,
ME (who believes in your wee folk clan.)

DEAR NURSE: PLEASE EXCUSE ME FOR MY ABSENCE AS I WAS DEATHLY ILL FOR THE PAST WEEK.

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i was caught with the surprise visit of the flu last week. i had a fever for 4 straight days ranging nothing lower than 100.7 and as high as 105.5 people. it was golly awful, especially with the chill and the sweat. i went to the doctor on the evening of the third day and was told that i had the minor flu. i had no fever for one day and was so happy but then it came back for another full day. so, to this doctor of mine, this aint no minor flu because it is deadly serious and if this is minor, then i dont know what the hell is the flu because this totally kicks my ass and then some more.

i was trying to draw a picture of what i feel like after the worse part of my flu and this is what i came up with. i am pretty happy with it and for some reason, this IS what i feel like. i am still a bit congested and still has a sore throat but i think i send the big evil portion back to its home.

it was hard NOT to think about the kids when i was super sick but there were moments that i just had to let go and passed out. i was still nursing matilda since she refuses the bottles (she prefers her milk straight from her source). my mansomehandboy was great at being with the kids and taking care of me the whole time and doing all the errands that i usually do as well. i think it was harder for him to keep me in bed than anything since i was trying hard to find ways to do things and be with the kids. as of this moment, no one else has caught my awful not minor flu and it better stay that way.

i am going to do all the fun things i wanted to do last weekend this weekend. YIPPEEEE.

note to self: need to get my bangs trimmed.

SUPERJUICYCHICKEN (PLUSH) UNITE.

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the final color (green) of SUPERJUICYCHICKEN plush is out guys. go and collect them all and please spread words. you wont regret it. i guarantee you.

psssstttt. i decided to do a little something something special, so, here it goes : for those of you that purchased SUPERJUICYCHICKEN plush, simply email me and show me receipt of your order (or some proof) and i will send you some special limited edition tee or tees. its that simple. no weird strings attached. i am doing it because i like you and i like that you like SUPERJUICYCHICKEN plush.

LETS DO THIS PEOPLE.

xoxo
me

A LITTLE SOMETHING SOMETHING MORE ABOUT MY M+M.

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milo had an EUA yesterday morning and when the doctor came out and said let me tell you the good news first, i thought, oh crap. the cornea infection in his left eye(home of the prosthesis shell)cleared up so we dont need to worry about that anymore and at some point in the near future, another prosthesis shell will be placed back in (not looking forward to that). as for the right eye, his pressure is still higher than what it should be so the doctor is jacking up the dosage on one of his eye drop to see if that will help. (he suspects that the existing valve is blocked by the growth of his iris.) we will go in for another EUA in one month and if the pressure is still high, the doctor will try to pull back his iris and if that is not possible, a new valve will be placed. i guess milo had a good run on his ahmed valve since he had it placed when he was 3 months old and its actually pretty unusual for it to be working for so long for a child. we got lucky and i really hope that whatever happens, his pressure will be under control soon because that is his only seeing eye and its already slightly damaged (the ophthalmologist estimate about a 20/100 vision + tunnel vision due to glaucoma).

the many great faces of milo.

but aside from this, milo has been great since his last EUA. with the prosthesis shell out of his eye and his infection being detected and treated, he hasnt had an episode of eyes shutting or painful breakdown and he is not sensitive to light as much. we have been doing our fun summer-ventures and its been really nice to see him so happy.

he will be starting a new regular preschool end of august and we got him a new big boy lunch bag (he saw the catalog and said thats what he wanted and i thought it would be a great little new thing for him for his new big boy school).

the always smiling matilda.

matilda has started eating solid for almost a month and she loves food so far and i am loving my Beaba food maker. it makes making food so much easier. i want to use it to make smoothie for myself every time i am making fresh fruit for her.

the summer is not over yet and the weather has been great this year (sorry east coast peeps)! we will continue to check off our summer-venture list. yeah.

PSSST. LISTEN TO ME. I TELL YOU THINGS.

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1. Artist Developing Bionic Replacement for Eye Lost in Accident. check this out and go to Tanya Marie Vlach‘s site for more details. i get excited when i see anything eye/prosthesis related and this one is pretty cool.

2. thanks for doing a post on my blog and spreading the love: Florence Rolando’s Pirouette | EQUAL DIST. | Solitary Arts

3.thank you for adding me on your blogroll guys: Thomas Marshall Does It All | Violet’s Journey | Congenital Glaucoma Network | La Princesse au petit pois

4.Bandolier bag by SSCY. my friend made this. GO GET ONE and spread the word. and yes, he is the one modeling the bag if you are wondering whos that sexy all leg man wearing that awsum rocking bag in his bike.

5. i started entering myself in contest i find via twitter via people i follow because i never have and i would like to win something something. fingers crossed people because here i come.

6. we have checked off some of our fun summer adventures off our list : Academy of Sciences, Day out with Thomas, Cars 2 and Winnie the Pooh. and this week we plan to go to Monterey Bay Aquarium.

OH! THE PLACES WE WILL GO.

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milo’s summer session at ECE ended last week SO HELLO SUMMER FUN TIME! we use summertime as an excuse to do more fun time with our little ones. well, it was actually last year we started this so called tradition since milo was old enough to go on adventures. so with the summer almost coming to an end, as i am constantly being reminded by the consuming world with back to school sale and pre fall season sale, i am going to share with you some fun places around us in the san francisco bay area. if you have any other places, please DO share and if you would like to meet up and join us, let me know too.

SAN FRANCISCO ZOO.

CALIFORNIA ACADEMY OF SCIENCES. – we took milo last year and i think he was a bit too young but i think he is ready for it again.

HAPPY HOLLOW.

MONTEREY BAY AQUARIUM. this place kicks my bum bum i tell you. i love going there. i would love to spend a night in a nearby town someday soon with my kids and make it a quick getaway that is not so far from home.

BAY AREA DISCOVERY MUSEUM.

FAIRYLAND.

PIXIELAND AMUSEMENT PARK.

STOW LAKE AT GOLDEN GATE PARK.

PARKSIDE AQUATIC PARK | SAN MATEO.

GILROY GARDENS.

LEMOS FARM.

HIDDEN VILLA.

PHIPPS FARM. well known around the bay for self-picking produce farm.

SAN FRANCISCO FIRE DEPARTMENT MUSEUM. free admission. and you can always stop by your local fire station for a visit, they are usually pretty nice about you walking in.

CHILDREN’S DISCOVERY MUSEUM | SAN JOSE.

ROARING CAMP RAILROADS. – we took milo there for the first time last year for a special Day Out with Thomas and it was fun if your kids love train as much as mine. *and please try to bring your own food because the food is not good. i know when you go to zoos, amusement parks & kids places, the food is not only overpriced but its not so good. but seriously, when we went last year we thought the food was pretty nasty. they are doing another Day Out with Thomas end of July and August, so, get your tickets if you want to go.

TILDEN PARK STEAM TRAIN.

BILLY JONES WILDCAT RAILROAD.

NILES CANYON RAILWAY.

BARON PARK GARDEN RAILWAY.

PALO ALTO JUNIOR MUSEUM & ZOO.

i dont think we will hit all these places but this is the list we will be starting from. we will at least try to visit one of these places each week, and if its not too far, we could even hit two of these places a week. but then again, we will be using this list all year round.

and oh yes, for those of you who would like to take your little ones to a movie theatre, theres a family friendly screening of Winnie the Pooh this saturday (july 23rd) at Redwood City’s AMC at 10:30am. its a good chance to take your little ones since they leave all the lights on and turn down the volume and you dont have to worry about your child crying or talking since its all about that. the Metreon use to have Reel Mom but they canceled that program a little bit ago. i have been trying hard to find more family screening/mom screening around the bay area but its hard. all i can do is to call each theater and unfortunately with the summer season and all summer part time job, most of the people that answer the phone has no idea what you are talking about. so, if you do want to inquire, ask for the manager and you can ask him/her if they are interested in hosting such events. good luck and please tell me if you know more places.

HAPPY SUMMER FUN FUN WITH YOUR FAMILY.
(and if you dont have little ones yet, some of these places are good places to take your date.)

A CRAB NAMED CRAP.

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milo had his EUA yesterday and the good news is his doctor found the reasons behind his pain. the pressure on his right eye is way higher and he thinks its because his implant valve is clogged. he is giving us two new eyedrops to use to see if that helps. if not, then other measures will have to happen like readjusting his existing valve or replacing the exiting one. as for his left eye, his doctor took out his prosthesis to check and found that he has a pretty bad cornea infection. the prosthesis is out of his eye and we have an antibiotic eye drop to give him every two hours. a culture was taken as well to define this infection and hopefully its nothing too bad. we were a bit relieved that they can explain his reasons of pain but the same time we feel horrible because he has been in pain all this time not because of him adjusting to his prosthesis but also because there was an infection AND his right eye pressure is way high. it makes this even more tricky in the future when he has to get his prosthesis back in. what happens when he complains of pain? is it the prosthesis or is he getting another infection? and is the prosthesis causing the infection? is he more prone to infection? can we do anything to prevent/decrease his chance of getting an infection? wheres is this 24hours hotline to call when you child gets prosthesis? it sucks because you cant really tell whats going on and its not like we can tell the infection to hold off on attacking his eye until he is well adjusted to his prosthesis. if i have the power of the aforementioned, i think i would be doing greater things and i would have a blog called I HAVE GREAT AMAZING POWER AND I AM NOT AFRAID TO USE IT & NO I AM NOT A MAGICIAN OR A GYPSY. well, thats kind of a long name but whatever, you get the point.

back to reality – i am SO glad that i requested this EUA because otherwise we would not have known that his pressure in his right eye is so high. the good thing is that the high pressure has not caused any nerve damage and also the cornea infection has not caused any permanent damage as well.

since his EUA in may, milo pretty much has a bad day once a week where he is in bed all day and no food, and sometimes it will last longer. about 2 weeks ago we found out of a family screening* of Cars 2 and we told him all about it and he was insanely excited for that day to come. the two days prior to the event, his eyes were feeling better and we were thrilled. the morning of the event he woke up not so great but milo was super brave and suck it up and kept telling us that he was okay even though you could see him blinking his eyes and moving his face a lot to adjust the discomfort of his prosthesis shell. he had couple pain related scream but we all made it into the car and we were all very excited to share this first time movie seeing experience with milo. as soon as we parked milo screamed and cried. we sat in the car with him for 40mins trying to talk him through it and explaining to him that if it hurts too much, we can see the movie at a later date when he is better. milo was very set on seeing it and he kept asking us to wait for him. his eyes were closed the whole time in the car aside from the several attempts to open which all ended with him screaming in pain. eventually we had to leave. he was extremely upset and disappointed. my hubby and i were heartbroken because we were excited to see him to be super excited to see the movie.

this is an illustration of the innocent looking evil prosthesis.
it is seriously this shape and the two black dots should be on the bottom when placed in the eye so you know if its turn upside down.
i only added the evil mouth to bring it to life.
heres a picture of the first prosthesis. the second one he had is pretty much the same except the occularist took out the top black dot so its easier to know if it is upside down.

i HATE that prosthesis shell SO much because it is completely controlling his life and its preventing him from doing things. my hubby and i are making sure that milo knows that it is not his fault that his eyes hurt and that it is okay if they hurt (even though it sucks), AND most importantly, we need to make sure that milo does not blame himself for his eyes. its all sounding very grown up. sometimes i take a step back and remind myself that he is only three years old and he has so much to deal with and that he will have so much more to deal with.
milo is the toughest and bravest superhero i know and probably you know.

lets hope this eye dropping eye drops will take away the nasty cornea infection on the left eye, his right eye pressure will be under control and he wont be light sensitive anymore. we will have another EUA in three weeks. until then…or as milo likes to say now, THE END.

xoxo

p.s. – matilda is doing well and growing up so fast. she started eating solid the day she turned 6 months old. she loves to smile and she loves watching milo. i started signing with her awhile back with everyday routine basic(milk, diaper change, bathtime, more) and now i am trying to do more. hopefully she will start signing soon!

FOOTNOTES:

* family screening – movie theater would host these every now and then (i think they should have these more especially in the summer time and have more than just one showing too) where the lights would be left on and they would lower the volume so the younger kids would feel okay watching the big screen.

MY LITTLE DUDE + MY LITTLE LADY.

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ONE & TWO. matilda sitting inside a step chair. my mom’s arm is holding her up. i recently purchased this H&M hat and i love it on her so much that i bought another one for her growing head. THREE & FOUR. matilda started teething when she was 4 1/2 months old and they started showing couple weeks ago and its been so hard to get it on film. but here they are!

matilda has been doing great. i have been taking her to her weekly baby class and milo tags along as well. i cant believe she will be 6 months this sunday. i wish i can keep her at this age for another year because she is so cuddly and giggly! they do grow up so fast. seeing matilda makes me wish that i can turn milo back to around her age. BUT with her 6 months coming up, it means she will be starting on those blend cereal. i would have started her earlier because she did showed interest in food but since milo has a high peanut allergy, her pediatrician recommends to wait till she is 6 months old. AND i decided to get a BÉABA to make life easier.

ONE + TWO + THREE. matilda loves to watch milo and i’ve been encouraging more brother sister time. i am asking milo to include matilda into his activities and asking him to talk with her and to show her his toys. we are teaching milo to make sure to make eye contacts with matilda when speaking with her, and to make sure that she can see his mouth when he is speaking to her. milo hasn’t quiet done that yet but at least we are starting to get milo into the habit. milo loves superheroes and matilda’s hearing impaired teacher came up with sign language for all his superheroes. as you can see in the pictures, matilda is highly attracted to the snack (PRETZ) that milo is eating. and milo is highly engaged in the iPad (the iPad has been a lifesaver ever since milo had his prosthesis. it is the one thing we still can use to get him to calm down and to open his eyes.)

THE MANY FACES OF MY LITTLE SUPERHERO.

milo is still dealing with his prosthesis. he pretty much has a bad day* once a week and he still complains about his eye or eyes everyday. he is still light sensitive and his vision teacher gave him a pair of fitover** sunglasses to put over his glasses (we called them his superhero sunglasses) and he would wear those and a hat when we go outside but a lot of times he would still keep his eyes closed until indoor. his prosthesis is still bothering him and its been a month since he had that put in. we talked with his occularist several times but unfortunately he doesn’t have any immediate solutions for milo and he said that it is unusual that its taking so long for him to adjust to it. we just have to wait it out and milo just need to be super brave.

due to recent bad eyes drama, i called his glaucoma doctor to schedule an EUA***soon rather than in september. i hope by then he is able to tell us whats up and maybe even get a good look at his prosthesis since the occultist wont be able to make it.

my husband and i are sometimes at lost as to who we should go to for these questions since milo has three main specialist. if only they can all check on him while he is put under at his routine EUA, it would be so much easier. or better yet, if i could just have a little dinner party once a month for them so we can talk and discuss and not have to worry about them having to rush out to see another patient or teach a class. i guess thats what you get when they are such great doctors. i should start some kind of dinner-party-with-your-kids-doctor-thing. every parent deserves to learn as much as they can about their kids and their conditions. i think i am on to something with this dinner party idea. if any doctors are out there, what do you think?

as i am writing this blog, milo is having a bad eye day. we were on our way to the SF Zoo to meet Captain America and five minutes into the car ride, milo started feeling horrible. we made it to the zoo at 9am and with loads of tears, he kept saying he wants to go see Captain America. after a hand shake and a picture, he broke down and just want to go home and go to sleep. he has been in bed all day and no meals. he tried a bunch of times to open his eyes but ended with screams because of the pain of his prosthesis. he is a super brave little boy. i just hope tomorrow morning will be better.

wish me luck.

FOOTNOTES
*bad day means that theres some sort of breakdown where he would shut down and wants to go to sleep and not open his eyes.
**milo’s vision teacher said that NOIR carries great sunglasses for vision impaired kids.
***Exam under Anesthesia