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

Posted on September 7, 2011 by nodesigns

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.

Posted on August 28, 2011 by nodesigns

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.

Posted on August 2, 2011 by nodesigns

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.

Posted on July 13, 2011 by nodesigns

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 July 3, 2011 by nodesigns

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.

Posted on June 29, 2011 by nodesigns

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

PARCA DAY AT THE FAIR.

Posted on June 1, 2011 by nodesigns

Tuesday, June 14th : PARCA day at the fair.
for people with developmental disabilities & their immediate families.
start time – 11am and rides will be open and free unti 12pm.

i never went but i signed up (thats right, you have to sign up here.)

i think it would be good for milo having that extra hour before its open to the public since he does get pretty anxious around a large crowd especially when there are lots of kids running around. he tends to step back, stay close to us and don’t really want to participate. its all because he does not have much peripheral vision on his only eye and things can get a little too much for him visually.

looking forward to this and i cant wait to see you + your family and your little ones.
and yeah for funnel cakes and cotton candy and all things sweets.

summer is here.

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

Posted on May 31, 2011 by nodesigns

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

Super Juicy Chicken

by Queenie Kroh, Illustrator, SF

Category Archives: my little girl