Category Archives: my little dude

BOO!

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HAPPY HALLOWEEN EVERYONE.
TRICK OR TREAT.

I have to admit that halloween is so much more fun when you have kids. This will be the first time for Milo to go trick or treating. His cousins are coming over and we shall attack our neighbors’ treats after pizza dinner and my homemade pumpkin cupcakes with my special made cupcake toppers! I hope most of the candies will be nut free (Milo is highly allergic to peanut).

Oh. I almost forgot. Milo decided to be Muno for Halloween this year. It took him about 15 other different costumes before coming to this decision. You don’t know who Muno is? Well, not many do for some reason. When people ask him who he is, this is how the conversation goes:

Person: “Who are you?”
Milo would quickly replied with his hands up in the air: “I am Muno, the one eye monster from Yo Gabba Gabba!”
Person: “Oh?!”
Milo always ends his descriptions by saying: ” It’s kind like dancing around in a movie theater.”
And with that, the Person who has no idea what Milo is dressed as gets even more confused and would just smile and slowly walks away.

Milo’s vision teacher at Early Start thinks his costume is too perfect for him because of the one eye. We love it and he is so proud!

Matilda was going to wear the pumpkin outfit that Milo had for his first halloween but then the day before her halloween parade at Early Start I realized that it was too small. I went and got her a bumble bee costume instead.

SLEEPOVER WITH OVERNIGHTER DOER.

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milo had his first sleepover last weekend with his two cousins (ages 3 and 4). they all slept in our room with their sleeping bags. it was a kind of a last minute thing so i didnt even think about what milo would sleep on. but right before we were setting up the kids on our floor, i remembered about my old skool Fisher Price sleeping bag which my dad scored for us via his connection back in the day. it was still in its original box which i kept after all these years. we have one in blue/yellow and another one in pink. it was perfect. we opened it and was very impressed with its simple design. you just roll it up and secure it with velcro and it has pockets on the end for him to put his goodies in. the bestest part is that it is blue which is milo’s favorite color (the pink one i am saving for matilda). i think it is pretty hard to find a sleeping bag with no designs or characters on them these days. i am SO glad that i kept this and i do love my old skool Fisher Price items. thank you thank you dad, i bet you never knew that someday it would be your grandson that would be using this.(because i certainly never imagine that it would be my kid that i am saving this for.)

dont get jealous people. sometimes its good to be keeper trapper (not a hoarder or at least not a dirty messy one). i have things that i kept from my childhood and most of the stuff are still in its original packaging (especially my hello kitty stuff) and it is not because i am hoping to sell them. it is because i love my stuff.

UMMM…I HATE BREAK UPS. WELL, SORT OF.

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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.

SUMMER FUNFUN GOODBYE BUT WE CANT WAIT TO SEE YOU MR. FALL.

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summer has officially (kind of?)ended with the end of summer vacation and all the back to school sale being over. but weather wise, it is still summer warm here and i cannot wait for my favorite season to arrive. fall was a huge disappointment last year because it cheated on us and it never came. when fall does fall, it makes me miss living in the east coast with all the foliage and all the beautiful colors.

milo started his new preschool last week and it went off pretty well even if he missed his first day of school due to his scheduled EUA. speaking of his EUA, to our surprise and to his doctor, milo’s eye pressure was at 17 which is super good so he doesnt need surgery yet but as the doctor stated it wont be long before he grows out of his valve and need a replacement. at the same time, his occularist was there to take another impression of his left eye for his future sclera shell (so NOT looking forward to that again).

this is the second week of school for milo and he is there three times a week for about 4 hours each time and so far, he is liking his big boy school. his main teacher and his VI (vision impaired)teacher are super great. milo is doing pretty good with his potty training! a HUGE yeah.

matilda has her behavioral hearing test this friday and we will hopefully get a better idea as to how much hearing loss she has. she is sitting up very well on her own and is doing everything except for moving forward. she gets up on all fours all the time and i bet she will be crawling in no time.

as for stuff, this is all the update i have so far. i am just waiting for the weather to be fall so i can really look forward to the beginning of all the great holidays beginning with halloween. i am never a big fan of halloween but now that i have kids, i really do love it and its also a kick start to the upcoming wonderful holidays like turkey eating day and christmas. lets get it started people.

DEAR WEE FOLK LOOKING DUDE, LETS MAKE THINGS HAPPEN.

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

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

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

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

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

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

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

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

EYES ON EYES ACTION.

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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.