Category Archives: family

HELLO TO YOU AND TO YOUR TWO THOUSAND AND TWELVE.

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Happy New Year guys. I am hoping everyone of you had a wonderful holiday in your own little way. We went on a vacation and we had an awsum time, but I must tell you guys that it started pretty bloody wild. Literally bloody wild.

On our 15 hours outbound flight, Milo’s good eye started bleeding. Yes, BLEEDING. We still had over 8 hours to go until our destination at that point. We thought about what exactly constitute as an emergency landing and if we were to land, I think the closest place at that point would be Japan. And of course to top it off, Milo started throwing up soon after the bloody discovery. And eventually his nose started bleeding intermittently as well. So, for the rest of the flight, his good eye and nose were bleeding and he was throwing up pretty regularly. It was the worst flight of all time. I kept thinking and panicking to myself that oh crap, is he going to loose his vision right now, right before our vacation starts, right before I get to show him all these cool stuff on our vacation and right before we meet up with his grandparents that he has been so eagerly looking forward to visit with.

I called my parents when we landed. I kept thinking of ways to break it to them without freaking them out, but there wasn’t really a good way if I had to use blood and Milo’s good eye in one sentence. We got really lucky and was able to see my dad’s ophthalmologist. The wait time before we saw him was scary. Milo kept saying I can’t see. I would gasped each time but I realized it was because of the giant puddle of blood collected in his eye. The ophthalmologist concluded that Milo must have rubbed his eye hard and made a small incision. He said it’s not uncommon at all and it does happen all the time. A giant sense of relieve was released in the air between myself, my hubby, my parents and possibly the kids.

Milo’s eye bled for couple more days. Matilda caught a cold on the plane and then we all caught it as well. SO, after a week of blood, vomit, and cold, we were so ready to play and we sure did. We had an awsum time and the kids loved seeing all the excitements and holiday decorations throughout the city. We ate all kinds of good food, with the exception that we ate at only two facilities since we wanted to be super safe due to Milo’s peanut allergy. We shopped at all different kinds of toy stores and I keep going back to my favorite store, MUJI. We took Milo and Matilda to Disneyland too.

Time went by super quick and it was so sad to go but I am so happy that we went and that it all worked out and no other crazee medical issues happened.

I want to write a little thing about traveling with special needs children, so, if you have no interest, then Happy New Year and I wish you guys the best of 2012 and I promise that I will try to post more this year and illustrate more. But if you are interested, here it goes. Being away from your home and really, from your own stuff is pretty hard especially when you have kids or special needs kids. During our trip, Milo didn’t like to walk much and it was not easy to carry a 3.5 year old around. Milo did not want to walk because there were so many people and they were all moving at a very fast pace and for being visually impaired, that makes it pretty darn scary and intimidating. It took Matilda awhile to get used to all kinds of loud noises. She turned her head a lot and was looking at me often for possible explanation as to what and where the noises were coming from. Being hearing impaired, it was challenging to be in such a place but at the same time I thought it was a good experience for her to learn to locate sounds. Milo was more challenging during our vacation since he is older and he is not as easy to carry compare to Matilda. (I used to ergo him in our past trip and he felt very secured with me holding him and we would talk about all the things we were seeing.) We wanted to take Milo to many places but we had to keep in mind of what he might like and not like due to his limited vision and whether or not he would be able to see them. I kept wishing there were some sort of ergo like thing for older kids with special needs. I wanted to ergo Milo but my hubby thought I was crazee because my back would have been dead if I were to walk around with Milo. Matilda was in the ergo everyday and she loved it. I guess a stroller would have been perfect but being in such a tight city, it was hard to get around. My hubby and I each had a pretty decent size backpack filled with Milo’s emergency medical supplies, extra clothing, diapers, wipes, Matilda’s baby food and snacks. It was okay when we didn’t make any purchases since we still have our hands to hold or carry Milo and Matilda, but when we did have shopping bags, it was a pretty good workout. I just wonder what your thoughts are and if anyone have any tips on traveling with special needs children. I really want to travel more with my two kids and especially with Milo because I want him to see as much as he can before his vision completely goes, but at the same time, I am reluctant to take him far because it is kind of a pain and also I am afraid to be far from his team of doctors after our bloody plane ride experience. Maybe I can win some kind of awsum ultimate vacation where when I travel with my kids, I would get car service following me around and have access to anything I want so that I know I can always reach doctors for my kids and that I don’t have to worry about Milo not walking. I want stress/medical free trip for my special needs children. All advices and tips are much appreciated.

Anyway, I think I win with this crazee bloody hell plane ride. Happy New Year guys and 2012 better rock your world.

xoxo
me

I WOULD LIKE TO GO ON A SECOND DATE WITH YO GABBA GABBA. CALL ME PLEASE.

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The show was SUPER AWSUM guys. I am so glad that we went and I am looking forward to our second date with Yo Gabba Gabba (minus the crazee accessible seating drama of course) when they come back to SF Bay Area again. Milo and Matilda had so much fun. Little Matilda seriously was rocking out the whole time on my lap. She is only 10 months old but she was dancing and waving her arms during the whole show. Milo still talks about the show and he likes to tell strangers that he went to see a big Yo Gabba Gabba concert and how they all came out of the box on stage. We get our daily dose of Yo Gabba Gabba on our boom box and we shake our sillies out.

Thank you YGG, you surely rock my kiddies world (and mine too). Please come back soon because we want to see you again.

1. Waiting for the show to start. 2. It was very exciting to see the whole gang and they shot out all these confettis. 3. Yacht (band) rocking out but the kids weren’t sure what’s going on.

4. YGG dancing with Ms. Leslie Hall 5. I love the bug costumes. 6. The centipede costume reminds me of No Face character from Spirited Away.

7. There’s a Party in my Tummy. 8. Biz Markie rocked the stage. Parents were cheering like crazee for him. 9. I enjoyed all the backdrop illustrations.

10. Weather theme confettis being shot out at the audience. 11. One final dance with Ms. Leslie Hall. 12. It’s time to say goodbye!

We headed to the party after the show. It was a room where we could meet the characters and balloons were all over the floor for the kids to play with. We were told that we could get a chance for hassle free merchandise shopping but guess what guys???!! The selection were so limited. It was NOTHING like what we saw at the main floor and it was so disappointing because we wanted to get stuff for the little ones but we waited thinking we could get the same stuff at the party!!! Milo was all prepared to shop for some YGG stuff and when I told him that we couldn’t, he kept telling me let’s to the party and get it. But he had so much fun meeting all the characters that he forgot about it. Now, I need to figure out where I can get those shirts I saw. We got the Muno shoes for him already.

Milo was SO excited to meet all his Yo Gabba Gabba friends.

Milo decided to get more dancing out of his system and then we ended our night with a quick story time with DJ Lance Rock and Ms. Leslie Hall.

I BUMPED MY HEAD WHEN I RODE THE AMBULANCE FOR THE FIRST TIME.

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I am still trying to catch up in time with the rest of you. It was a crazee medical week last week. SO much to share and here it goes. Milo’s first night time trick-or-treating was good. We made it halfway around the neighborhood before he got too freaked out with the darkness. I think it’s just too much for him visually especially when there were lots of blinky halloween decoration lights.

Last week we had to take Milo to the urgent care at the clinic for his wheezing and he ended up in the hospital via ambulance for 4 days and 3 nights. It turned out that he had a pretty significant respiratory distress secondary to an asthma exacerbation. (We did not know he has asthma and this was the first time ever.) His oxygen level was pretty darn low for awhile and eventually he only needed his medication every 4 hours, in which it was safe for him to go home. Those couple days were very hectic. Matilda and I would run home in the evening and in the morning we would hurry back to the hospital to hang out with Milo. My hubby stayed with him every night and he would go home when I am there just to shower and get more supplies for the night.

Milo was discharged on Wednesday afternoon and it is so nice to have him back home and just have everyone in the house.

The next morning, we had to get up insanely early to go see his ocularist for a prosthesis scleral shell fitting. We made this appointment over 2 months ago. All in all it wasn’t too bad. Milo was not put under for the whole process. The impression was made at 8am and we went back at 11:30am for the shell. Milo was not too happy about it but he survived and so did we. We have been taking the shell out daily and each day we add more hours on his wearing time so that he can adjust better. It is pretty scary to put it in and take it out, especially the first day, and especially difficult when he is crying and squeezing his eye real right. After the first day, we noticed the shell turning sideways and it is still doing that on day 4. The ocularist told us to try it for a few days and if it’s still happening, we would need to go back for another impression. Milo does not have much luck with prosthesis but at least it’s not like last time (or at least not yet).

This past week was a crazee medical week. We pretty much lost a week and I thought Thanksgiving was in two weeks but realized that it is next week! I want my week back. I am so behind in everything, let along have time to blog. There are so many things I need and want to do. I guess I can catch up if I give up this week’s sleep but that is not possible since catching up on sleep is one of the things that I’ve been wanting to do since I had Milo. And most importantly, poor Matilda seemed forgotten last week because we were just so busy with Milo and she was so great at being so easy for me.

In sum, Milo is doing well since his asthma attack. He has all these inhalers he has to take and one of them is every 4 hours (my hubby gets up in the middle of the night to administer it) and hopefully he can cut down a bit after seeing his pediatrician. Now, I need to go and purchase a giant bag, a cute one of course, to put all his medications (eye drops, Epipen, inhalers, sclera shell case) so that it can easily be transfer between bags.

BUT WE GOT OUR TURKEY. I wish I can time freeze like that Evie girl from Out of this World. And if I could, I would rent out my time freezing fingers to others and can make some good money and not have to worry about getting projects while being a full time mom.

P.S. – Update to my last post about my Yo Gabba Gabba tickets, the people at Yo Gabba Gabba are so great at responding to my email and have been wonderful. The supervisor level people at San Jose Team email me and told me that they are dealing with the issue. San Jose Mercury News email me and told me that they will keep an eye on it (whatever that means). And I received lots of direct message due to the post which all has been very nice. I am still spreading word around when I can. I know the parents and staff at Early Staff appreciate my story and will know how to deal with situation like this in the future. Thank you everyone. xoxox – don’t mess with me because i will do something about it.

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.

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.)

SUMMER FUN.

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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.

xoxo
me

DEAR MEN: HAPPY FATHER’S DAY. YOU HAVE EXTRA HEARTS AROUND YOU TODAY.

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

HAPPY FATHER’S DAY.

TO MY MANSOMEHANDBOY (a.k.a husband), HAPPY DADA’S DAY. YOU ARE AN AMAZINGLY AMAZING FATHER TO YOUR CHILDREN AND YOU PICK OUT THE COOLEST BESTEST TOYS FOR THEM. NO DOUBT, YOU SHALL BE SHOWER WITH LOADS OF BUBBLY HEARTS TODAY.

XOXO
ME+MILO+MATILDA

WE WANT TO SCREAM: FRACK THIS PROSTHESIS TO PIECES.

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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.

SO FIRST FITTING OF PROSTHESIS: F.A.I.L.E.D.

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.

FOOTNOTES:
*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.

PARCA DAY AT THE FAIR.

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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.