Category Archives: my little superheroes

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.

MY FIRST DATE WITH YO GABBA GABBA.

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We decided to get tickets to take Milo to see Yo Gabba Gabba this November when they are in the Bay Area. It occurred to me that I will need to get front row seats for Milo and Matilda due to their vision and hearing impairment. I called San Jose Civic about accessible seating and they directed me to tickemaster.com. The process turned out to be super easy and I was told that my accessible seats are on the front row. I was thrilled and told Milo how we are going to see them and he was ecstatic. Later that day, I went to check the seat map of our seats and discovered that the tickermaster representative had booked us at the Fresno location!!?? I called ticketmaster.com and luckily I was able to get a refund. (It almost seemed too easy when I did it because they made a big point about how the tickets are nonrefundable and blah blab blah.)
FORESHADOW OF THIS LITTLE EXPERIENCE: THIS WAS JUST A PRACTICE RUN AS TO WHAT IS TO COME.

Between Muno and Plex, Milo picked Muno as his Halloween costume because they didnt have Plex in his size.

Here comes the craziness and I will try my best to refrain from using bad mouthing language:

CALL TO TICKETMASTER.COM – OCTOBER 26, 2011 AROUND 9PM (SPOKE WITH KIMBERLY):
I called to get tickets for the correct location and was told that there were no accessible seating for vision and hearing impairment for this event but they have wheelchair seating on the balcony level in the back. WhatWhatTheWhat was in my head so I repeated my question and I was told the same thing and that I should contact the venue because it is up to them to release those seats. AND she made a point to tell me (more than once) that it is very rare that they get requests for accessible seating for vision and hearing impairment. I did not respond to her because I was confused and surprised by her comment and not sure why she felt the need to say that to me. Was I suppose to say oh in that case never mind, let me just get some regular seats for my vision and hearing impaired kids so that they can go and sit super far away and won’t be able to see or hear a thing.

CALL TO SAN JOSE CIVIC BOX OFFICE – OCTOBER 27, 2011 AROUND 9AM:
I asked to speak with someone that can help me with accessible seating and he told me that they have no control of the seating arrangement and how it is up to the producer of Yo Gabba Gabba and I should call them to complain. I told him that I called ticketmaster and they informed me that the venue itself should be able to accomadate accessible seating for me. He then told me again that he cannot help me because they are not selling tickets to this show and that I need to call ticketmaster.com or call the producer of Yo Gabba Gabba and question them about accessible seating because they are the ones that have the ultimate control. Our conversation ended. I was pretty confused and a bit frustrated at how difficult it is to get accessible seating. It reminded me of speaking with lame-O airline representatives and how you get a different answer for the same question based on who you speak with.

I took a break since I had to take Milo to his weekly swim class. On the way, I kept thinking how I should approach this because it’s a bit ridiculous how NOT easy it is to get accessible seating and how ironic it is that it’s so hard to do it. AND the thought of reaching out to the producers of Yo Gabba Gabba did crossed my mind because I want to share with them how hard it is to get accessible seating and how they need to accommodate since it is part of the ADA law. I decided that I will call San Jose Box Office again to get more information about accessible seating and how it is arranged so that I can have all my information and start my complaint and get my answers. At this point, my goal was NOT about getting accessible seating for my kids, it’s about fighting for my kids’ rights. (I know it sounds kind of like a breakthrough point in a movie but unfortunately this is FOR REAL people.)

CALL TO TEAM SAN JOSE – OCTOBER 27, 2011 AROUND 10:30AM:
Instead of pressing 4 to be connected with the San Jose Box office, I pressed 0 under all other information (I was hoping that there would be someone else that I can speak with aside from the person that I spoke with earlier this morning at the box office). Claudia answered and I asked her who should I speak with about accessible seating for an upcoming venue. Right away she told me I should call the box office and Kevin or Peter can help me. She kindly transferred the call.

CALL TRANSFERRED TO SAN JOSE BOX OFFICE – OCTOBER 27, 2011 AROUND 10:32AM:
I started out the conversation again with can I please speak with someone that can help me with accessible seating. I was told by the other end that he was the one because he did not transfer me to another party and he responded by a yes. I told him that he might have been the person that I spoke with earlier in regards to accessible seating (I knew he was because I recognized his voice) and I would like to get a better understanding on this subject. He confirmed with me that I did not speak with him earlier (but I am sure it was him.). I told him that I want to find out more about accessible seating for the Yo Gabba Gabba event and he quickly told me that I will have to talk with the producer of that show because they do not sell tickets to this show and that San Jose Box Office has nothing to do with the seating arrangement and I should call ticketmaster to get the ticket. I told him that I did talked with ticketmaster and was told that I need to talk with the venue because they are the one that has control over the seating arrangements. Again, box office guy told me that he cannot do anything and that I need to call the producers of Yo Gabba Gabba. (As you can see, this is pretty much the same conversation that we had earlier that morning.) I then proceed to ask him how does accessible seating work for any shows that takes place at the San Jose Civic and I shared with him that I was booked by mistake for the Yo Gabba Gabba show in Fresno and they had accessible seating and it seems strange that the producer would make arrangement for Fresno location to have accessible seating but not at the San Jose Civic. The box office boy’s voice got very irritated and told me to stop calling him about this because 1) he cannot solve my problem and 2) he does not work at Fresno location so he has no idea what they do. With that being said, he pretty much confirmed with me that he was the one that I spoke with earlier in the day because he told me to stop calling him about this subject. I was too pissed off at this point to point this factor out to him. I told him that 1) I am not asking him to solve my problem 2) I am simply asking and gathering information as to how accessible seating is arranged so that I can have all the correct information and make complaints to the appropriate party and 3) he needs to calm down because I am not blaming him for anything. The all worked up box office guy kept on going off about how I need to stop calling him and that there is nothing he can do and how if I want to discuss SJBroadway he can tell me all about that. I pretty much tuned out at this point because I was getting very upset. SO, in a very calm voice, I said to box office guy, let’s get this straight, if I am to come into the box office today in person and told you that I need to get tickets for accessible seating for Yo Gabba Gabba you would tell me sorry I cannot help you. He said yes that’s right. I knew with that I was so done with him and that this is turning out to be even more crazee than what I expected. For reference sake, I asked him for his name and he did not say anything. I asked him if he was Kevin or Peter and he paused for a bit and said Kevin is not here. I said you must be Peter. He paused again and said no. I asked him again for his name. He paused and said there is no need for you to know my name because I am not selling you anything. I said are you refusing to tell me your name, he said yes. I told him that your name must be ASSHOLE because you are a complete ASS on this and he better read up about the ADA law. He was going off about something but I tuned out and was livid and almost in tears because I cannot believe the words that came out of that guy’s mouth.

CALL TO TEAM SAN JOSE – OCTOBER 27, 2011 AROUND 10:45AM:
I chose option 0 again because I want to find out the name of the box office guy and to file an official complaint. Claudia answered and I reminded her that I had called earlier and I told her what had happened. She was quick to apologize and assured me that she will go and find out the name of the guy and she will put in the compliant. I was a bit emotional when I was speaking with her because I was filled with so much frustration. Claudia told me that I should talk with Peter who is the ticket manager and he is extremely nice and would be able to help. I thanked her and was put on hold to be transferred to Peter.

TRANSFERRED TO PETER, TICKET MANAGER AT SAN JOSE BOX OFFICE – OCTOBER 27. 2011AROUND 10:50AM:
I got his voicemail.

CALL TO TEAM SAN JOSE *OPTION 0 – OCTOBER 27. 2011 AROUND 10:51AM:
I informed Claudia that I was not able to reach Peter and she told me I should leave a message for him and that Peter is extremely nice. She suggested that I should mentioned my bad experience with the box office guy to Peter.

TRANSFERRED TO PETER, TICKET MANAGER AT SAN JOSE BOX OFFICE – OCTOBER 27. 2011AROUND 10:52AM:
Peter answered and I told him that I need help with accessible seating for Yo Gabba Gabba and before I even told him what had happened, he quickly told me that yes he can help me even though they do not sell the tickets directly. I then told him what had happened and that I was told that they are not able to help with accessible seating and he confirmed with me that it is not true. He said he is able to look at the same seat map as ticketmaster and he saw available seats for accessible seating. Since he cannot sell tickets directly from his box office, Peter put in a request for Kathy from ticketmaster to contact me with my reserved accessible seats. I think at this point I was relived because there’s actually someone that is reasonable and know what the hell they are talking about. But at the same time I think I was still thinking about that nasty useless box office guy and how stupid it is that I had to go through all that just to get seats.

All this ended pretty much when Milo was done with his swim lesson and I am sure parents and teachers at the pool were wondering what was wrong with me since I was on the phone and was so emotional. Milo had no idea of course what happened.

When I got home, I called Claudia to thank her for her help and to ask her for the name of the rude ass box office guy. HIS NAME IS MICHALE. Claudia assured me that a verbal complaint has been made to a supervisor and that an internal talk has happened and that he is or has already gone through some people skill training. (In my opinion, Michael needs more than people skill training.) She again apologized and said that box office staff should have excellent customer service and she did not know what happened.

CALL FROM KATHY AT TICKETMASTER.COM – OCTOBER 27, 2011 AROUND 12:30PM:
Kathy got Peter’s message and helped me processed the accessible seat tickets that Peter had reserved for me. I asked her why is it that Peter can see the availability of the accessible seating in his system but the representatives I spoke with at ticketmaster.com could not. She said that she could not see them as well. I was confused because Peter told me that his system for the seating map is the same as ticketmaster.com. Why do they make it so difficult for people that need accessible seating to get a ticket? It’s already annoying that people that needs accessible seating have to call or email versus getting it online like a regular seat. And since San Jose box office does not sell tickets to this show directly how will people get accessible seating if ticketmaster cannot see those accessible seat or if they get someone like Michael that is no help. ANSWER THAT TICKETMASTER.COM AND SAN JOSE BOX OFFICE??!!!! Please refer to this ADA requirements on ticket sales ticketmaster.

CALL TO PETER AT SAN JOSE BOX OFFICE – OCTOBER 27, 2011 AROUND 12:50PM:
I called to say thank you to Peter and told him that I got my tickets. He apologized for my horrible experience and told me that they had talk about it internally.

Yet again, I learned a lot via my kids’s disabilities and how hard things can be and will be for them and for many out there. When things like this happen, I really wish I have more time to get involved to help. But as of now, all I can do is to be a constant advocate for my children and to blog about it so that others can see and will pass it along. I will for sure share this eperience with Early Start’s teachers and parents. Please kindly re-tweet this or share this on your blog and pass it along. I have every intention to email this to the producer of Yo Gabba Gabba, to City of San Jose, to ADA.gov, to my local news team and to other places that I can find along the way. If you can think of anyone else, tell me. I love sharing!

THIS SHOW BETTER BE GOOD.

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.

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

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.

ME+MY PERFECT PAIR:The untold brief history of me, my children and what my blog shall be.

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hi. lets get right into it.
my name is queenie. i am an illustrator, a designer, a wife and a mother of two. i love to create. i love to draw. i love fashion. i love patterns. i love all things cute. i love stuff. i love kids (especially my kids no doubt). AND i love to consume. oh! i almost forgot that i love bread and tart. basically i am human. i started this blog because i want to share with people my illustrations/characters and all the goodies i find from fashion to design to food to travel and pretty much anything that makes my eyes drool. the blog is my bff where i could just go and share all my findings and i could comment about it without having to stop and wait for feedbacks. i was able to let it all out (and my mansomedude a.k.a my husband did not have to hear all about it)without comments. he didn’t really want to be my human blog.

just recently i decided that i wanted to find a better theme to my blog even though if you look at my past postings you get a pretty good idea of what its all about. i guess i should really say that i want to add something else to my blog and to do so i need to give you a little intro/update. i want to talk about raising special needs children and mainly from my own experiences.

i have two kids. milo is my three year old (just turned three last week) and matilda is my almost 5 month old. milo was born with a rare congenital eye defect where he has no vision on his left eye and very limited vision on his right eye due to glaucoma and FEVR. he has had many surgeries since he was 10 days old until now due to his conditions. he has these super cute blue glasses that he has been wearing since he was three months old (he is super near sighted). under the state of California milo is considered to be legally blind. matilda was born this januray and she has microtia in her left ear and conductive hearing loss as well. both of them are more powerful on their right side than their left side. i always say to milo: its okay if you cant see it, just listen. now i will have to say this to matilda: its okay if you can hear it, just look.

with milo’s vision impairment since day one (on top of being a first time mom), i learned A LOT about the whole process from the State to different programs available and of course, dealing with your health insurance to just taking care of your special needs child. its definitely a lot of information to take in when you have a baby and especially when its your first one. i was very overwhelmed when we had to go through all that as milo is our first baby and with the very unexpected findings of his vision. with matilda, my husband noticed her deformation left ear as soon as she came out. i only noticed it when my husband said something to the doctor since i didn’t see her left side when she was handed to me. we both acknowledged her left ear nonchalantly and was just thrilled that she arrived. milo had us trained too well with his conditions.

milo has been enrolled in Early Start Education with our county since he was 7 weeks old and he will be graduating from them after this summer because he turned three years old. then he can transferred into the district (which is a whole other system with meetings you have to go through). matilda got accepted into the same program due to her hearing loss. i got one kid in the vision class and the other in hearing class. we are the first family that the school has seen with 2 kids with a completely nonrelated conditions. in a way, i am happy to know that matilda will get to experience the same school that milo was in because the teachers are wonderful and its such a safe and friendly environment. and i get to see the teachers for another three years.

i told my husband that we should play the lottery because the chances of having both a vision and hearing impaired kids are very very rare especially since both side of the families have no history. maybe when i do go and get a lottery ticket and win you will see me on the news with those giant fake checks (wait, do they do that or am i thinking about the publishing clearing house commercial?).

i’ve been through it and still am and i want to share it with you and i think i am a pretty good advocate for families with special needs kids especially with hearing and vision impaired. we had no support when we first went through it (we had families to support but to be honest, its very different since its a whole new topic) and i want to be here for those families going through it.

i am not only going to talk about my kids on this blog, i will continue to do what i am doing but i want my blog readers to know that i am here if you have any questions. and i know this is the longest post ever but really theres no short brief way to introduce. (i am fancy like that.)

xoxox
me