Category Archives: prosthesis

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

Posted on by
1

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.

UMMM…I HATE BREAK UPS. WELL, SORT OF.

Posted on by
2

in april and may, milo had tired a prosthesis scleral shell and they both failed horribly. the first time only lasted one day and the second time he had it for about a month but it was a bad month and he ended up with a bad cornea infection. you can go here and here and here and here for more detailed postings.

we recently went to meet with another ocularist to see if he would be a better match for milo after discussing the matters with milo’s opthamologist. just to clarify, our first ocularist was a super nice guy and i dont want to give the impression that he is bad in any way. he did come highly recommended to us but sometimes you are just not compatible. this new ocularist we saw was very nice as well and we told him about milo’s history of scleral shell and what our concerns are. we left feeling confident and milo will get his impression of his third trial of a prosthesis scleral shell in november. i am already anticipating the anxiousness of it all and also we were informed that we should take it out of milo’s eye every night or every other night. EEK!

to prepare him, i have been showing milo how i take out my contacts (or shells is the term i used for him) every night and how it tickles my eyeballs and its not scary at all. i remind him that a new big boy shell will have to be place back in his big boy’s eye. so far, his reactions has been positive. fingers crossed you guys, i really hope this will work out. i dont want to see my little milo to be suffering like last time.

if anyone out there would like to know more in details about my experiences with the ocularists and who they are, please email me and i will tell you as much as you want.

and to our first ocularist: thank you. you are nice but because we love our little milo, we have no choice but to try another ocularist because we cannot see him suffer again and maybe his eye and you are not meant to be. this is hard because its a small eye world and i am sure we will cross path again. all our best to you.
(i honestly believe that he kind of figure out that we will find someone else because of the bad experiences milo had from talking with him at milo’s recent EUA.)

p.s. i am always so thankful that we live in the awsum SF Bay Area because we actually have the choice to go see another top rocking ocularist.

PSSST. LISTEN TO ME. I TELL YOU THINGS.

Posted on by
Reply

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.

A CRAB NAMED CRAP.

Posted on by
4

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.

Posted on by
4

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

EYES ON EYES ACTION.

Posted on by
Reply
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.

WE WANT TO SCREAM: FRACK THIS PROSTHESIS TO PIECES.

Posted on by
1

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.