It is the beginning of a wonderful relationship. They love one another and sometimes they fight (maybe more than sometimes) but they are each other’s eyes and ears, literally. Milo has one semi-working eye and Matilda has one working ear. They are my perfect pair and I would not change a thing about them.
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1) Raincoat: Hatley
2) Matilda: Top: MiniBoden | Pants: Hanna Anderson | Shoes: Milo’s || Milo: Top: JCrew | Shorts: Target | Shoes:NewBalance
3) Top: MUJI | Pants: Hanna Anderson
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4) Milo as Robot
5) Matilda wearing her last year’s bee costume. Milo wearing Matilda’s this year’s Foofa costume.
6) This all happened after trick-or-treating when they were giving out candies to the trick-or-treaters. Milo as Chewbacca and Matilda just gave up on wearing pants.
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7) Milo as Captain America and Matilda as a garden gnome for a Halloween parade in town.
8) On the actual Halloween night, Milo decided to be Batman Wolverine and Matilda decided to be Foofa. 9) We were on the way from our house to trick-or-treat.
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10) Milo as Batman when I took him to walk around on the day of Halloween.
11) Milo with his Halloween crafty hat the week before Halloween.
12) Matilda sporting her mustache.
Halloween stayed and finally went bye-bye. We pretty much got excited about Halloween a month or so before the actual day and we made the mistake of asking Milo what he wanted to be for Halloween. It switched in a daily basis and when we took him shopping 3 weeks before the actual day, he decided he wanted to be Plex from YoGabbaGabba. Unfortunately the largest size they had was 3-4 years old. So, Milo picked Batman. For the next week or so, he bounced from Batman to Antman to Hawkeye and all the other superheroes. We told him that he needed to make up his mind and Captain America was his final decision. (We kept the Batman costume since Milo dresses up pretty often.) Matilda didn’t really care who she was going to be and being only 20months old, we got to decide for her. We chose Foofa from YoGabbaGabba. We would put Matilda in her costume several times a week to get her used to it but she really didnt care for it that much, so, I got her a garden gnome costume since its just a dress and she would be better about wearing it.
Both kids’s school had a Halloween party and we took the kids to town for the annual Halloween parade follow by trick-or-treating. We went to a pumpkin patch and did all the bouncy houses, haunted houses, pony riding and the train ride.
A week before Halloween, we practiced walking around our neighborhood with the kids when it was light out and when it was dark out. We wanted Milo to know what to expect, from getting used to walking in the dark and having decorations lighting around people’s houses. I highly suggest doing this with kids, especially with VI kids because it really helps to minimize his/her’s anxiety and the unknown especially the blinking/flashing decoration lights.
We ended up trick-or-treating at 7 houses! We are SO very proud of Milo and he was great about it. We were only going to go to 1 house but we did 7 instead. And he picked the house with very minimal decorations and no flashing lights of any kinds. Matilda did all of those and was very good! We came back to our place and Milo loved passing out candies to everyone and seeing all their costume.
We had a great Halloween and I am so proud of my superheroes. Milo decided to be BatmanWolverine and Matilda insisted on being Foofa on the night of Halloween. But for their school party, Milo was Captain America and Matilda was a garden gnome. Then again, it’s like Halloween at our home everyday because they love to dress up.
Hello! Hello! Hello! The summer came and went and somehow it’s has been so busy that I seriously have not had time to blog. But I am here now. Lets do a quick recap of our summer.
We did a bunch of fun stuff locally and Milo was in school as usual and Matilda had a longer break since her baby class ended in July. We had family members visiting with us for a short time and the kids enjoy their company. Milo’s eyes have been stable and it’s great but at the same time, I have to think twice about it since its rare that nothing major had happened. (YEAH to that of course!)
My hubby took on our summer project of repainting all our bedrooms. I was of no help in the paint department because my job was to keep the kids away during the process. We did all the rooms in white and I am loving it. We purchased some new furniture for the kids’ room. Our room used to be chocolate brown and now it’s SO bright. We keep thinking that we turned on some bright lights but really, its just the white wall. It’s nice because it is bright for Milo when he is playing in our room. I have to figure out all the decorations for all the rooms. It will take some time because I never seem to have time to do all the things I want!!
We ended our summer by going to a wedding of our friend and Milo had a blast because he is one dancing machine and he loved taking silly pictures in the photobooth.
I had a bunch of projects on my own and it was a challenge to illustrate what I needed but I did it. I lost some time because my back gave out on me for no reason and I was in pain for a week, then my right hand decided to swell up and it turned out to be some kind of arthritis and that took forever to heal and it still gets bad when I use my right hand too much which sucks a big one since I am right handed. (I guess my body is telling me that I am getting old!)
Here are a bunch of pictures from the summer and I am sure I have left out a bunch of stuff but I am sure you won’t miss it since you don’t even know what. And if I think of it, I will be sure to share at a later time.
My two little munchkins are keeping me busy these days, but really good busy.
The kids and I went to SFZoo right before July 4th and it was nice since it wasn’t very crowded. We did our usual of petting zoo, riding the Little Puffer, viewing of some animals that aren’t too far away for us to see and we ended with lunch. Another fun thing we did was inviting the cousins over for a big sleep over. The kids had lots of fun and they ended up watching The Secret World of Arrietty and Star Wars.
Pictures like these make me so happy. These days, when the both of them interact with one another, it is the best thing of my day. I can’t stop smiling and I wish at that moment, everyone I know can come over and witness the cuteness between the two. They are my team and they are each other’s team. They are the perfect team. They are each other’s eyes and ears. Literally. Milo got the super hearing power (with his only one seeing low vision eye) and Matilda has super vision power (with her hearing loss).
Milo and Matilda are what I do each and every day. I can count how many times out of both their lives that I left them with someone else. It’s almost never. It’s not that I don’t choose to or I am a crazy overprotected parent, it’s just that I like to hang out with them and there’s really nothing that important that I have to go to. My hubby and I probably had 4 to 5 date nights since we had Milo and that was almost 4 years ago. We had talked about how it would be nice to go on dates and get someone to come and babysit, but we thought why go through all that (or to bother my parents when they are in town) when we can take them out with us because we like to hang out with them. But recently, I have given this more thoughts and how it would be very nice to go on a date with my hubby even if it’s just a quick dinner, a nice stroll around town or a quick lunch picnic. Because seriously, I think we need that. My parents were in town and we went on a quick dinner date and it was really nice. Really nice. It made me feel refresh and made me appreciate him more in ways that I haven’t because we never take time out for ourselves. But here’s the thing, it is not super easy to find a babysitter and even if I do, I need to train this babysitter on all the extra things that he/she will need to do to take care of Milo in case of medical emergency like his peanut allergy, his asthma, and his prosthesis and how to take it out if it starts to bother him. Would that be too much to ask from a kid, assuming that the babysitter is a kid like it used to be? Are there rules out there about babysitting special needs children in the world of The Babysitter Club*? With all these questions and somewhat concerns, that’s why we never really made an effort to search for one. It’s not because I won’t trust the babysitter, it just seems like it’s too much to ask for an hour or two. Anyone? (I wish I can ask the teacher assistant in his Early Start Program to babysit because he knows them. But how do you ask them that? It seems like of weird. Right?)
*The Babysitter Club. I am speaking of the series that I read when I was growing up. Do kids still read this or do they have other updated version of this like the Twilight coolness of Babysitter Club.
Happy New Year guys. I am hoping everyone of you had a wonderful holiday in your own little way. We went on a vacation and we had an awsum time, but I must tell you guys that it started pretty bloody wild. Literally bloody wild.
On our 15 hours outbound flight, Milo’s good eye started bleeding. Yes, BLEEDING. We still had over 8 hours to go until our destination at that point. We thought about what exactly constitute as an emergency landing and if we were to land, I think the closest place at that point would be Japan. And of course to top it off, Milo started throwing up soon after the bloody discovery. And eventually his nose started bleeding intermittently as well. So, for the rest of the flight, his good eye and nose were bleeding and he was throwing up pretty regularly. It was the worst flight of all time. I kept thinking and panicking to myself that oh crap, is he going to loose his vision right now, right before our vacation starts, right before I get to show him all these cool stuff on our vacation and right before we meet up with his grandparents that he has been so eagerly looking forward to visit with.
I called my parents when we landed. I kept thinking of ways to break it to them without freaking them out, but there wasn’t really a good way if I had to use blood and Milo’s good eye in one sentence. We got really lucky and was able to see my dad’s ophthalmologist. The wait time before we saw him was scary. Milo kept saying I can’t see. I would gasped each time but I realized it was because of the giant puddle of blood collected in his eye. The ophthalmologist concluded that Milo must have rubbed his eye hard and made a small incision. He said it’s not uncommon at all and it does happen all the time. A giant sense of relieve was released in the air between myself, my hubby, my parents and possibly the kids.
Milo’s eye bled for couple more days. Matilda caught a cold on the plane and then we all caught it as well. SO, after a week of blood, vomit, and cold, we were so ready to play and we sure did. We had an awsum time and the kids loved seeing all the excitements and holiday decorations throughout the city. We ate all kinds of good food, with the exception that we ate at only two facilities since we wanted to be super safe due to Milo’s peanut allergy. We shopped at all different kinds of toy stores and I keep going back to my favorite store, MUJI. We took Milo and Matilda to Disneyland too.
Time went by super quick and it was so sad to go but I am so happy that we went and that it all worked out and no other crazee medical issues happened.
I want to write a little thing about traveling with special needs children, so, if you have no interest, then Happy New Year and I wish you guys the best of 2012 and I promise that I will try to post more this year and illustrate more. But if you are interested, here it goes. Being away from your home and really, from your own stuff is pretty hard especially when you have kids or special needs kids. During our trip, Milo didn’t like to walk much and it was not easy to carry a 3.5 year old around. Milo did not want to walk because there were so many people and they were all moving at a very fast pace and for being visually impaired, that makes it pretty darn scary and intimidating. It took Matilda awhile to get used to all kinds of loud noises. She turned her head a lot and was looking at me often for possible explanation as to what and where the noises were coming from. Being hearing impaired, it was challenging to be in such a place but at the same time I thought it was a good experience for her to learn to locate sounds. Milo was more challenging during our vacation since he is older and he is not as easy to carry compare to Matilda. (I used to ergo him in our past trip and he felt very secured with me holding him and we would talk about all the things we were seeing.) We wanted to take Milo to many places but we had to keep in mind of what he might like and not like due to his limited vision and whether or not he would be able to see them. I kept wishing there were some sort of ergo like thing for older kids with special needs. I wanted to ergo Milo but my hubby thought I was crazee because my back would have been dead if I were to walk around with Milo. Matilda was in the ergo everyday and she loved it. I guess a stroller would have been perfect but being in such a tight city, it was hard to get around. My hubby and I each had a pretty decent size backpack filled with Milo’s emergency medical supplies, extra clothing, diapers, wipes, Matilda’s baby food and snacks. It was okay when we didn’t make any purchases since we still have our hands to hold or carry Milo and Matilda, but when we did have shopping bags, it was a pretty good workout. I just wonder what your thoughts are and if anyone have any tips on traveling with special needs children. I really want to travel more with my two kids and especially with Milo because I want him to see as much as he can before his vision completely goes, but at the same time, I am reluctant to take him far because it is kind of a pain and also I am afraid to be far from his team of doctors after our bloody plane ride experience. Maybe I can win some kind of awsum ultimate vacation where when I travel with my kids, I would get car service following me around and have access to anything I want so that I know I can always reach doctors for my kids and that I don’t have to worry about Milo not walking. I want stress/medical free trip for my special needs children. All advices and tips are much appreciated.
Anyway, I think I win with this crazee bloody hell plane ride. Happy New Year guys and 2012 better rock your world.
Let’s get right to it people. My sense of time has been on drugs recently or at least it feels like it because of all the unexpected medical stuff that has been happening nonstop since first week of November. I have to keep reminding myself that it is no longer November.
After Milo’s whole asthma attack (see post), we had about 5 uneventful days where we got to catch up on those days when Milo was in the hospital. Right before Thanksgiving, Milo went back to see his ocularist and got another impression done since he already outgrew the one he got one week prior. Milo is still not happy with the process of putting in and taking out the shell but at least it’s not bothering him when it is in his eye.
Milo had an EUA just last week and the good news is that his pressure is stable. The tube part of his Ahmed valve has worked itself out to the top layer of his iris, so the doctor removed it since it wasn’t functioning anyway. He left the plate part of his implant in since that would be a bigger procedure. At the same time, his glaucoma doctor discovered a shallow retina detachment and a retina doctor took a look and reported no damages as of this moment. It is just sitting there taunting his vision and my stress and worry. The recent discovery of the shallow retina detachment is sitting behind the laser wall that Milo got when he was 11 days old (he got a laser surgery to prevent his retina from further detachment, hence, his vision on his only seeing eye is not so good). And according to the doctor, it will do no threat to his vision unless it breaks through that wall. The really sucky part is that it doesn’t slowly happen or it does not creep up to the wall, it just happens and when it does, there goes Milo’s vision. It may never break through that wall but the fact that it exists is driving me crazee and making me worry. The doctor told us that we will know it break through when Milo’s vision worsen. How great is that. No warning sign. I am not even sure if this is something they are able to see at a regular office visit.
We’ve been prepared since day one that Milo’s vision will never get better and that it can and might get worse, meaning he will be completely blind. He has been doing so well in his three years of life and seeing more than what all the doctors have expected which made my expectations way higher. I know Milo would still be fine if he were to have no vision, but it’s just not fair. That’s the best way I can put it.
The night of his EUA, Milo threw up all over our bed (he barely ate anything that day since he was so whiny and was complaining of pain). The next day he pretty much threw up all day and even had diarrhea. At first we thought it was his reaction to the anesthesia but it was probably a stomach bug he caught from the hospital. The next day he was better and then he started complaining about pain in his right eye. We spoke with the doctor the day before and she did tell us that he might be sore from the EUA and the tube removal. The next day he woke up crying/screaming and refuses to open up his eyes because it hurt and he was very light sensitive. Eventually we got him to snap out of it and he opened up his eyes but still had complaints about his eye hurting a few times. The next two days were pretty much the same except that he didn’t really open up his eyes at all. Luckily we had a scheduled routine appointment with his ophthalmologist so he was able to check his eyes before the weekend. It turned out that Milo had an infection on his right eye and hence the pain and light sensitivity. It’s been almost a week and it’s almost all better. We went to see the ocularist and he did a minor cosmetic adjustment on his shell and after 2 days, he had some discomfort so we went back to see him and it was just a minor scratch on the shell that he had to smooth out. SO, now with only a few days left before we leave for vacation, I really hope that nothing else will happen. Because really people, what else can happen. I think in the month of November and up to today, we have covered the whole spectrum of Milo’s eye conditions, from his retina and glaucoma to his prosthesis and then to the surprising asthma.
And oh yes, my little Matilda. She barely got much time from us because we were so busy with Milo. She has been a great little sister and was easy to take care of during all of this as we go from doctor’s visits to hospital to just being in a dark house while Milo was in bed. But there was one day when I did take Matilda in to see her doctor because I noticed a decent size lump on her breasts and some discoloration. An ultrasound was done right away and it’s benign but we have to keep an eye out in case it changes. The last thing I need is for my kids to have more crazee medical crap because I already got way too many going on. If I were to ever encounter a person called GOD, I would say, DUDE, what IS up with all this stuff with my kids and why and what the hell were you thinking?
This is the story of my November and December. And I can’t wait til our vacation and to report to all guys about our awsum trip and how we had no medical surprises afterward! Let’s cross those fingers and whatever else you are supposed to do to make bad stuff go away. And to practice, let’s make this new sick feeling I am getting tonight be gone by the time I wake up tomorrow.
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.