Distance learning

Owen has grown his love for drawing during this period and one day he decided to draw Covid. When I asked him how he came up with the image, he said it’s the image from the signs that are posted around town.

Everything and everyone’s life have been altered in some way due to Covid. Our last “normal” day was on March 12, 2020. I remembered it so well because that was the day when I took my dad to the airport and that was the last day when my kids went to school as they know it for their last 2020-2021 school year. Just like everyone else our routines have changed so much and so many times.

We have been here and we still are at the same place since almost a year ago.

I had just quit my job right before the start of this and I am not sure if it’s good timing or bad timing. It was good because I was able to devote all my time to the kids with distance learning; it was not so good because I did not have the time to pursue what I wanted career wise and therefore we did not have much financial stability as before. I am lucky that I am able to take time off to concentrate on the kids. It is a huge blessing and I am very thankful. But even so, I still want and will achieve the goal of what I want to do when I made the decision to quit.

I want to work in the field of accessibility where I can use my extensive knowledge from having 2 children with disabilities and incorporate into the world of technology. I have not pinpoint a specific title to the exact position but this is what I would like to do – being part of the accessibility design process, being an inclusion advocate, informing others of what technology is available that can help with their disabilities, and to be a parent advocate especially for the hearing and vision impaired.

I know there are many people that have been doing the work to support the disability community and it is only in recent years that I noticed the changes are really happening. Bigger companies (i.e. Google, Apple) seem to make more effort to include accessibility design as part of their standard design and they are more outspoken with their support. It is so great to see these changes along the side of inclusion for all. There are so much more to do and we can always do better. I want to be part of it. I have been an advocate for my kids since they were born. I have learned so much from their doctors, their specialist, and most of all from themselves. It is a great joy to watch your children grow and at the same time it is scary to imagine the world where I cannot always be there to protect them.

I have learned so much during distance learning with what my hearing impaired and vision impaired children need. I have learned how their tools are crucial to their daily learning. I have learned how technology can help their way of life based on their own disability. I have learned and I know that their tools need to evolve with technology constantly. I have the advantage to know it because I have 2 kids that show and teach me what helps them and what is hard for them. They are so used to going out of their way to accommodate themselves and I need to teach them to ask for help because things does not need to be hard for them, or not so much.

New ear: Part two.

Matilda had her second part of her surgery (this part usually happen 3 moths after the first surgery) where they take a skin graft from the area above her new ear and then placed it over her new ear after they lift her new ear up. They took some extra cartilage from her rib at her last surgery and stored it right underneath her skin for later use. It’s a pretty neat idea since they don’t have to cut her deep down again and the cartilage has a perfect little safe storage place.

I had asked the surgeons if they would be willing to give Matilda an ear pierce during her surgery since I am afraid to go anywhere with her new special ear! Matilda and I picked out her first earrings and had it all ready to go the morning of the surgery. In the picture you can see the mark where they will place her earring.

The surgeons took pictures of what they had done and it’s pretty great.

She did not have to stay overnight for this part of the surgery and just have to rest for about 2 weeks. With this surgery there are lots of wound care and frequent doctor’s visit to check on the wound. Matilda did great and was very happy with this one since she did not have to stay in the hospital.

Matilda wore these bands I got her daily when she went out to cover her wounds but after 2 weeks or so, she decided to not wear it and just show her cool rock start look.

Happy New (Y)Ear!

Matilda had the first part of her rib cartilage reconstructive surgery and she stayed in the hospital for 5 days after. The surgery went well after a good 12 hours and her surgeons were very happy with the result. Here are some pictures that the surgeons took of the ribs they took from her to build her a new ear.

You can tell what an amazing work the surgeons did and some skills! In the last two pictures you can see the 2 tubes that are below her ear that helped her drain the fluid. It was not comfortable at all and she did not like it when she noticed them.

Matilda woke up pretty happy and it was not until hours later when she realized she had all these tubes coming from her ear and her rib wound that she shut down and was feeling extremely sad.

She had a tough time when we were at the hospital once she saw all the tubing and how restricted she was with mobility. She refused to look at herself in the mirror and pretty much refused to talk or even eat. When the nurses asked her about her pain level she was always nodding that she is fine (I think it was just easy to do so than saying anything else). The doctor gave her goals and one of them was to make sure she moves her neck around especially the side she had surgery because kids tend to avoid it which then causes stiffness. Matilda did just that. She was afraid to move her new ear side. I had to constantly remind her of our goal which is to go home after 5 days and we do not want to stay longer, so after 2 days she finally got better of moving around but still with lots of prompting. Her mood was still very down and I was definitely feeling frustrated. I asked for a physical therapist to work with her and the doctor instructed the nurse to give her higher dose of pain medication versus the low dose she has been getting. Matilda was also very sleep deprived since every 2-3 hours a nurse would come in and check her vital and administer her medication (and when the medication is done it delivers a loud beeping sound that does not stop until a nurse comes back in). No one was getting any good sleep. On the third night, I requested that she needs at least 6 straight hours of no interruption and we worked it out so that she had her medicine as late as we could so she can sleep better.

Matilda had received gifts before the surgery so that she could open them while she was there but Matilda refused to open any of them nor did she want anyone to visit. She wanted to do everything when she gets home.

It was a long and tough 5 days but she did it. I think it was hard because it is completely not what she had expected. But she did it and she was so brave and she can’t wait for Christmas. Our second part surgery is in 4 months and she will not have to stay in the hospital and just rest for 2 weeks at home.

Happy New (Y)ear!

A perfect custom gift for kids.

 

I love all things unique and creative for myself and my kids. When I learned about Alexis of MayLo Studio, I was so excited and knew I had to reach out to her for a project for Matilda. If you go and see her instagram pics, you would want to get on ordering one.

I approached her because her work stood out to me among a lot of the custom dolls I have seen. I wanted a custom dolls for Matilda because I want it to be unique and special like her and I also want to incorporate her personality and her hearing aid. When I reached out and asked Alexis, she was super excited and told me so many ideas she could do for mini doll size Matilda with her hearing aid. I knew that she is the one! She asked questions about Matilda to get a sense of her personality and what she likes and I sent her pictures of Matilda’s hearing aid. 

When the doll came, it was amazing, better than what I expected. Matilda was thrilled and she loved how the doll’s hearing aid was exactly like hers. Alexis even took the time to make the doll different soft bands for the hearing aid and the details of her work is just so beautiful! I was so amazed by it that I took the doll out when Matilda was in school to show it off!

To this day, Matilda still plays with it and it has a very special place in her room. I am even debating having one make for the boys! If you guys ever want a very special presents or just something that you want to be like I can’t believe I didn’t know about this earlier, go to Alexis. She rocks. No regrets.

*this is not a sponsor post fyi.*

SHE LOVES PINK AND SHE WANTS YOU TO KNOW.

My little girl is growing up way too fast. She turned two years old in January and she is no longer a baby but an official toddler with so much to say and constantly on the run. It is so true when you hear people tell you to enjoy them because they grow up fast and they really do. They are growing up way too fast and there is no slowing down for sure. Watch out world, my little Matilda is ready for the world. 
Matilda has been at Early Start and she started Total Communication class since she was 18months old and she has been keeping up with her sign language (so have I and Milo) and she is using it more on a regular basis which is awsum. What I love is the fact that I can use sign language with her and it is like our own little secret (and it’s a bonus because I can sign to her versus raising my voice in public when I need her to behave). She had a recent visit with her audiologist and there were some fluid found in her ear and we will back to check on that again soon and hopefully that will be gone since that is her good ear. 

MY KIDS HEART EVERY REASON TO DRESS UP. THANK YOU HALLOWEEN FOR BEING YOU.

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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 SUMMER | GOODBYE SUMMER

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.

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1) Milo: Top: Gap Kids 2) Matilda: Top: JCrew 3) Milo: Top: Sugarman | Pants: MiniBoden | Shoes: New Balance || Matilda: Top: Zara + MUJI | Pants: MotherCare | Shoes: Zara

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4) Matilda: Shirt: MiniBoden 5) Milo: Shirt: Uniqlo 6) Matilda: Top: JCrew | Pants: Target | Shoes: Milo’s || Milo: Top: KingKow | Pants: MiniBoden | Shoes: New Balance

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7+8+9) Matilda: Jacket: North Face | Pants: Target || Milo: Jacket: North Face
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10+11) Milo and Matilda wearing Matilda’s bumblebee costume from last Halloween 12) Milo dressed as Chewbacca
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13) Matilda: Top: Mighty Fine tee | Pants: Target 14) Milo: Top: Mighty Fine tee | Pants: MiniBoden
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16) Matilda: Top: MiniBoden | Pants: Hanna Anderson 17) Milo: Top: Target | Pants: MiniBoden
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19) Milo: Top: Uniqlo | Pants: MiniBoden || Matilda: Top: Splendid | Pants: GapKids 20) Milo: Top: Mighty Fine tee 21) Matilda: Top: Old Navy | Milo: Top: Old Navy | Swim trunks: Hanna Anderson
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22) Matilda: Top: Splendid | Pants: Target 22) Milo: Top: Target | Pants: MiniBoden 23) Matilda: Top: MUJI + MiniBoden | Pants: Target
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23+24+25) Milo: Top: Target | Matilda: Top: MiniBoden

Thank you Summer 2012, it was great to know you. We will catch you next year!
xoxo
me

TWO CUTE FOR WORDS.

  
Milo: Top: White undershirt from Marks and Spencer 
Matilda: Top: both top from Naartjie Kids

My two little munchkins are keeping me busy these days, but really good busy.

Let me tell you what we’ve been up to lately with all the pictures that I have taken with my iPhone. There are lots of pictures, but I figure that I have been lacking in posting about the kiddies, I might as well post a bunch now.

Milo: Top: Mini Boden | Shorts: Mini Boden | Shoes: Keen
Matilda: Top: JCrew kids | Pants: Mini Boden | Shoes: Zara Kids | Backpack: Stole from Milo by Sanrio
Both kids had an ophthalmologist appointment and everything is stable for Milo. As for Matilda, this is her first official check up and everything looks healthy. We had her eyes check because Milo’s ophthalmologist told us (not to scare us) that she could get the same conditions as Milo.

Left picture: Matilda: Top: JCrew | Pants: Janie and Jack | Shoes: Milo’s old shoes | Hat: from Costco
Left picture: Milo: Top: Mini Boden | Pants: Mini Boden | Shoes: New Balance | Hat: Anpanman
Right picture: Milo: Top: MUJI + Buzz Lightyear costume | Shorts: Gap Kids | Booties: Gap Kids
Right picture:  Matilda: Top: Milo’s old Mini Boden | Pants: Gap Kids | Hammer: Thor’s mighty hammer

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.

Left picture: Matilda: Top: Zara Kids | Pants: Gap Kids| Shoes: Salt Water
Left picture: Milo: Top: Mighty Fine tee | Shorts: Mini Boden | Shoes: Keen
Right picture: Matilda: Top: MUJI

Both kids passed out after our fun filled day spent at Piedmont with parade and hanging out with our besties on July 4th. Matilda had her first experience riding with Elmo when we shopped at Toys R Us.
Milo: Top: Gap Kids | Home Pants: Gap Kids 
Matilda: Top: Milo’s Mini Boden | Home Pants: Milo’s

Brother and sister love. Moment like this makes my heart melt and makes me wishes everyone can feel how I feel when I see the two of them together. Its the best of the best.
 Matilda: Top: Milo’s Mini Boden | Home Pants: Milo’s | Doll: Corolle

We got Matilda her first realistic looking doll and a stroller. It’s quiet hard to find one that does not look scary and Corolle makes pretty cute looking ones. 
Milo: Top: MUJI | Home Pants: Gap Kids 
                                              Matilda: Top: Naartjie Kids | Pants: Mothercare

Our house will not be the same if we don’t have dress up as our everyday life. Milo was some Star Wars character, Luke Skywalker or Hans Solo. Matilda is the cutest Ironman I know, way better than Robert Downey Jr. 
Milo: Top: Gap Kids
                                              Matilda: Top: Splendid | Pants: Gap Kids | Slippers: MUJI

We’ve had a pretty good few weeks and Milo loves to dress up everyday and be in character. Matilda loves to steal our slippers and walk away and act surprised when we find her with our stolen slippers. I love these two munchkins and I can’t imagine my life without them. I am so lucky that I get to be a stay at home mom because I would never want to miss a second of their lives, even those crappy, whiny and grumpy moments. 

NEW ADVENTURE FOR THE DAY.

Milo: Top: Zara | Pants: Mini Boden | Shoes: Yo Gabba Gabba Vans
Matilda: Jacket: Jacadi | Pants: Mini Boden | Shoes: Stride Rite

We took the kids to Bay Area Discovery Museum and it was super fun. We got the tickets via Groupon awhile back and I wish we took the kids there earlier. Milo and Matilda had so much fun exploring and playing. We went on a weekday so that it would be less crowded for Milo. Milo tends to do better when there are less people around because it’s more of a challenge for him visually to navigate when there are more kids running around him. We are planning our next visit back (maybe for Milo’s birthday next month) and it is so tempting to do the membership. If you have never visited, you really should go.