Outdoor Ed

Every 5th graders experience a week at Outdoor Ed with their school in CA. We have heard of it and we knew we wanted Milo to do it with his class. Milo attended his first away camp at Enchanted Hills Camp (EHC) two summers ago and he enjoyed it very much. EHC serves blind/low vision kids and we had no hesitation when we sent Milo there for his first time since we know he would be very well taken care of in terms of his visual needs. With the Outdoor Ed, we had some concerns, mostly logistic and we worked them out with Milo’s O&M teacher several months in advance to come up with a plan to get him ready along with his VI team at school.

Here was the list that we wanted more info on or had concern with prior to the outing:

  • What activities will there be starting at dusk and night time and where would they be in relation to his cabin (since Milo’s can’t see at night)?
  • If there is no bathroom in his cabin, what can be done to assist him to go out in the dark when he needs to go (and to make sure he won’t feel embarrassed)?
  • Can we request that he gets the lower bunk bed in his cabin for easy access?
  • There is a scheduled night hike they go on and instead of opting out, can he have someone (an adult) that will be with him the whole time. What other evening/night activities are scheduled?

These are the few questions that I had and I brought them up at his IEP before he started 5th grade. The school and his specialists agreed that Milo will get a full time aide with him during the whole trip and that Milo’s O&M will try to be there on his first day to get him situated and to let the staff at the site know of his VI needs. His O&M also took Milo on trails to get him familiar with uneven terrain. The school also put in a request well in advance for Milo to get a cabin with a bathroom and an extra bed for his aide to be in the same cabin with him along with his peers. Another suggestion that the school and us had was to to assign a close friend of Milo to be his cabin mate and group so that Milo will feel more relaxed knowing he can ask his friend for help.

Practice walking on uneven terrain with his O&M.

Milo was very excited for his trip and because of the amazing support we have from his specialists and from his school, we were so happy that Milo could join his class.

When Milo returned home, he was very happy with his experience and had more positive than negative comments. One of the main negative factor to his trip was the cold and wet weather especially when they went to the beach.

We are very lucky to be in an amazing school district where we never feel like we have to fight hard for his services. We always know that if we need anything, we can ask his team. We are always so grateful for his team and it makes me so upset when I know that it is not the case for a lot of kids and their families.

Milo’s turn

Milo decided to join the fun with Matilda and surprised us with having to have a last minute procedure after the holiday. He went in for a procedural check up with his retina specialist and it was discovered that he had about 150 bleeding blood vessels. It was an out patient procedure and it was only about 3 hours. Milo was excited because he was able to try out the new facility as Matilda.

The procedure went well and Milo woke up and had 2 of those yummie popsicles before being released.

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!

This is Matilda.

It’s been awhile since I updated my kid’s condition since forever ago (as seen in this initial post). I want to get back to the world of posting so I can talk about my 3 kids and especially with Milo and Matilda with their vision impairment and hearing impairment. I want to do it not because I need people to know all about them but because this is an easy way for me to reach out to families like us or similar to us so we can learn from one another.

Let’s talk about Matilda. Matilda was born with congenital microtia & atresia. She has unilateral hearing on her right ear and conductive hearing loss on her left ear. She has been wearing her Bone Anchored Hearing Aid (BAHA) since it was recommended when she was around 2 years old. We were told from early on that Matilda is an excellent candidate for a rib cartilage graft surgical reconstruction.

Last year her microtia team recommended that Matilda is physically ready for the surgery and we agreed to have the first of her three part surgery this summer. We planned our summer schedule so that she would have the surgery right at the beginning of the summer to allow time to heal and time to play before school resumes. She had her CT scan early spring and due to some unusual finding a MRI was performed as well. We were told that she has double ear canal and there was a mass (they suspected to be a teratoma) that needs to be removed. Luckily, the team of doctors were able to come up with a plan where they could do both the procedures at the same time with just one cut. We were warned that the mass was close to her facial nerve and there was a chance they might not be able to remove all of it.

On the long awaited day of her surgery we were reminded it was at least a 10 hour surgery but we would be updated every few hours. The plan was to first remove the mass and if that goes smoothly they will start the reconstructive surgery; but the mass itself could take up to 10 hours to remove. We went home to start the very long slow wait and I started cleaning right away since it was hard to do any work that required concentration. It was about 3 hours later we got a call from the hospital that everything was going well and stage one was completed and they were moving on to the next step. My husband and I felt relived and we assumed they meant they took out the mass and going to start the reconstructive part. I quickly texted my parents and I decided to take a shower before we head back to the hospital. Shortly after that, we got another call from the hospital asking us to return to the waiting area because the surgeons want to speak with us. We were confused since we were just told by another person that they were moving on to the next step. We rushed out of the house and anxiously wondering why the 10+ hours surgery was over.

My husband and I were placed in a consultation room to wait for the surgeons to come talk with us. At that moment, I was experiencing all the flashback of doctors telling us about Milo with all his medical conditions. My husband and I did not have time to express our fears to one another but I know each of us were thinking of our own.

When the doctors walked into the room I knew they were going to tell us something that was not so good based on their expressions and careful caring voices. The doctors informed us that during their surgery as they were starting to remove the suspected mass, the facial nerve sensors all went off and they found something called the facial nerve schwannoma. The two surgeons said it is a very rare tumor (they have never seen one in all their years of practice) and what is more rare is that it is almost exclusive on an adult and not on a child. Luckily they were able to call for a specialist in this specific type of tumor and when he took a look at Matilda’s tumor, he was very excited. At that moment it somehow gave me a feeling of relief because it brought me back to doctors informing us of Milo’s conditions and that gave me a sense of security because I can relate that one adjective to this new unexpected information we were told. It is strange; but at that moment I have nothing to relate to.

The surgeons told us because of the location of her tumor, a biopsy can never be done because it would touch her facial nerve and that would cause permanent damage. Removing the tumor will also touch her facial nerve which would result in facial nerve paralysis. We were also told she can never have her inner ear surgery (this is the one where they would open up her ear canal to allow possible sound in to give her some hearing). She can also never have an abutment placed under her scalp so that she can have another option for her current hearing aid (this one would allow her to attach her hearing device onto a magnet place under her scalp so she does not have to wear her soft band); the reason is because she will have to get a life time of MRI to monitor the growth of her tumor. 

Her reconstructive surgery was put on a hold and that was why her 10+ hours surgery was over in 3 hours. It was a lot of information taken in, unexpected and for a truly surprising reason. My husband and I told the surgeons we never thought Matilda would fall into the category of Milo.

It took Matilda awhile to wake up since she was put down heavily for a 10+ hours surgery. She was very confused as to why she was not staying in the hospital for 5 nights. We told her what happened and she was a bit confused and somehow she was more disappointed that she can’t have the option to have an abutment placed under her scalp to attach her hearing aid. When we told Milo about the tumor, he quickly asked if that’s the same tumor that killed Peter Quill’s mom in the Guardian of the Galaxy’s movie; we assured him that is not the same tumor and he was so relieved. Then he followed by saying how even more special Matilda is and how more similar they are with both their medical conditions.

We were able to cut in line and saw the specialist in September and he informed us that he had never seen a case like Matilda in his many years of practice. He searched all over the medical world and was not able to locate an article where microtia and facial nerve schwannoma occurred at the same time. Matilda is a very special and rare case. (Of course she is, our family can’t have it any other way.) The specialist said even on older patients he does not do anything to their tumors unless it’s life threatening because there will always be facial never paralysis when he performs them. In summary, we will have to monitor the growth of Matilda’s tumor with routine MRI and we will also know when the tumor grows when we see facial deformities.

In the end we (including Matilda) decided to proceed with her reconstructive surgery after the surgeons and the specialist approve of it. Matilda will be going under part one of the surgery this week. She has to stay in the hospital for 5 nights since it’s a lot of pain management and making sure her new skin will not be infected. I joked with her surgeons that I hope there will be no surprises during the surgery; they told me they did not booked anyone else for that reason because we are a rare family with rare conditions. I laughed but they did not so much. 

I am often asked how I feel about all of this new information. I have to say that I am okay with them. I think it’s because we are so well trained by Milo. I feel like this is our norm. But of course, it sucks a lot. I can only protect them so much and prepare them so much but in the end they are the one facing their blindness and their facial never paralysis (and possibly something else). It breaks my heart to think about it because I know at some point in their life, they will wish they don’t have it and they will wonder why is it her/him. I know they will feel insecure and mocked. Unfortunately it will get more cruel as they get older when they have to deal with all the social peers. My husband and I can only teach, prepare and embrace their differences as much as we can but in the end, it is them to have to decide how to present themselves.

Parenting is SO hard. I believe that all parents wish they can take their kids’ pains away whether they are sick, feeling sad, or being mocked because all we want for our kids is to be happy, confident and be proud of who they are. Life does suck; but at the same time we are so lucky to live in the area where we have the top specialists for both my kids’ disabilities. The medical world finds us fascinating when they ask for medical history because we have kids with two completely unrelated conditions and they are such rare ones too. I have an amazing husband whom I am so lucky to have through all this. We are building an amazing community of friends from Matilda’s school. I am trying hard to reach out to more and more people who are like us who I can support and help as much as I have learned from both my kids.

This is her favorite goat because it has little ears like hers.

P.S. We need to body scan our youngest since he has nothing (yet) or as we say, he’s the weird one in the family. 😉

P.P.S Thank you to those who have reached out to us with well wishes.

xo

me.

 

I am making a come back kids!

Aside

 

I have been starting my past several blogs with “its been so long since I wrote,” so this is not any different because it has been awhile. It is hard to find time to write a new post with my schedule and I really hope that I can write more often, or least I am going to make an effort to at least write one every 2 weeks. 

I started the blog after Milo was born as a way for me to share Milo’s medical conditions and just about us as a family. After Matilda was born, it got harder because I was busy with 2 little ones but I was more interested in sharing because Matilda had a separate medical condition from Milo. We were an unique family having 2 kids with 2 separate conditions. I started working part time when Matilda was a toddler and that gave me even less time and then I got pregnant with Owen. Fast forward to today, I want to start sharing again even if it means my posts will be short.

Stay tuned people because there have been lots to catch up on.

 

xo

My child could have (but didn’t) die and it’s because of my careless mistake.

I haven’t posted in a very long time. I am back because I want to share this recent incident that happened. It’s a true scary story. We found out Milo was allergic to peanuts when we introduced it to him when he was one year old. He is now 9 years old. He gets tested every year and he is still very allergic. Another known time that he had peanuts, aside from his first tiny dose at age one, was mistakenly given to him by his VI specialist at his preschool when we were not with him. Milo’s reactions were hives and profuse vomiting. EpiPen is always with us and we never had given it to him until yesterday.

I have been very vigilant at reading food labels since we found out he is allergic to peanuts. As the years gone by and with no incident, I have come to realize that I am not as vigilant as I used to be. I learned this because I was very careless and gave Milo a cookie that contained peanut paste. Yes, you heard me. I fed my peanut allergic child peanut. I made a horrible mistake and gave him a cookie without being thorough with looking at the ingredients. It was a chocolate cookie and by seeing that, it subconsciously gave me a reason to not have to be so detail with examining the ingredients carefully. It was wrong, very wrong. I was wrong, very regretfully wrong.

 

Milo had the cookie, got into the car and headed for hjs karate lesson. He felt bad soon after and my husband called to ask me if he ate something new. I said yes and right away I thought F—! and grabbed the box and started looking for the word “peanuts” and there it was “peanut paste.” F–K! was right. They came home and we gave him his Benadryl and waited out for his throw up. We watched for hives but there were none. This was the first time (thanks to me) that we are with him and actually know that he ate peanuts. We did not know how his body would react since each allergic reaction can be very different. It was decided we should take Milo to the emergency room because we read that anaphylactic reactions can happen hours from intake. Soon after Milo got into the car, he threw up and he informed us that his throat is very itchy. My husband called 911 and administered an EpiPen (for the first time ever). The fireman and paramedics came and took Milo to the hospital in the ambulance. Milo was still very chatty with all the firemen and paramedics so it was a very good sign that he was stable.

 

Milo stayed in the hospital for couple hours and since we are not too far from the hospital, he was discharged. Milo was a trooper and so was my husband. I felt horrible and full of guilt but none of them made me feel bad or said a word about what I did because of my careless mistake.

 

The day surprisingly went on like it was planned. Matilda had a pool party in which she attended and had a blast. She did asked me if Milo was going to die while I was taking her to the party. I told her that Milo will be okay because we took all the steps we needed to and if we didn’t, he could die. Owen was over the moon with having the firemen in our home along with the firetruck and a fire paramedic truck in our driveway. I even made it on time to Milo and Matilda’s back to school night (along with my sweaty self and an amazing amount of guilt and relief that Milo was okay).

 

The image of me not reading the instructions carefully kept repeating in my mind along with what if I can go back in time thought. I know I can’t do the latter and that is why I am sharing this with you all so that it won’t happen to you or anyone you know.

 

 

This is my story and luckily it has a happy ending. I learned a very important lesson and so did the rest of the family. Milo learned how serious his allergy can be and that it can be lethal. Matilda also learned how serious it can be. Owen learned that when Milo has a boo-boo, the firemen and paramedics come to our house. We all learned to be vigilant again. Milo learned to remind us about reading the ingredients and that he needs to read the ingredients as well and not rely on others (perfect example of how his mother cannot be trusted). We learned that we have to be more aware of others who also have allergies. My husband and I both learned that getting immediate medical help is the way to go, whether or not there is any immediate reaction.

 

It is very very important to take action when your child (or an adult) comes in contact with the food he/she is allergic to. It is crucial to go to the hospital. Reactions can take hours to happen and sometimes if you wait for a long time to do anything, the result can be lethal. It really is better to be safe than to be sorry.

 

Judgement or no judgement, I don’t care. I just want to share this because we all can get too comfortable at something that we shouldn’t. This is how I will end this post – Hi, I am a mom and today my child could have die because I got too comfortable with his peanut allergy and made a stupid careless mistake.

 

WHAT I THINK YOU SHOULD (MUST) GET WHEN YOU HAVE A BABY.

Image

When I was pregnant with my first, I went overboard and got so (too) much stuff and way in advance too. We got this one book (I can’t remember what it was for the life of me, its probably something like The best of… or The most essential items that you will ever need… but I do remember that book being THE book/guide that everyone had) and had reviews and ratings on all essentials. I regret buying some big items in advance since some did not suited me (like the Baby Bjorn) and some did not fit in the lifestyle of our family. We were also the first among our friends to have kids so we did not get much tips.

With Matilda, we were somewhat pro and plus there were so many more recommendations and new items on the market and out on blogs that I read about in which I did not with Milo. Now, with Owen I have to say I got this whole baby essential thing down pretty good and I want to share it with you since I rely so much on tips from other moms/families and I want to do the same for others.

One thing I have learned having 3 kids in 7 years is that there are constantly so much cool gadgets coming out and to be honest, I constantly want to try them all.

Let’s start with strollers:

bugaboo_paul_frank500

1. We have the Bugaboo Cameleon since Milo and is still going strong. We purchased the kickboard (now they have it with a little seat)when we had Matilda. If I have to do it again and knowing I will have 3 kids, I will still get the Bugaboo but of course I would go with the newest Bugaboo donkey series. I really was tempted to switch it up when it came out, but I could not rationalize spending the money when I already have one.

2. We got a Maclaren XT Techno stroller when Milo was 4.5 months while we were traveling in Asia and it works great except that we rarely used it since we always chose the Bugaboo over the Maclaren due to the kickboard feature so that Milo can ride on it. But if the Bugaboo is too big and bulky, I would recommend the Maclaren for sure.

3. We got a BOB double stroller after Matilda and it works great for both kids (even now) when we go for an outing to the zoo, parks and camp grounds. For the size of it, it’s pretty easy to fold up.

In the past few years, there have been an increase amount of new brand and models coming out for strollers and it makes it even harder to decide what is best for your family. I would invest in a good one especially if you plan to have more than one child. Then, think about the size of your stroller and if your car or whatever means of transportation you have can accommodate that. When we were traveling in Asia, the Maclaren was convenient but at times it was a pain because there were stairs everywhere and we have to take Milo out and fold up the darn thing all the time. If I have a do over starting with Milo, I would just get the Bugaboo and then invest in baby carrier.

 

Baby carriers:

 

1. Ergo. That is all. It is the best thing. I love it. We had a baby bjorn and that thing hurt my back so much (I have a back problem) that I could not use it for more than 20minutes. I discovered Ergo and my first thought was, why did you not come into my life sooner. I used it with both Milo and Matilda until they were 2.5 years old. It is perfect for traveling. Some people prefer carrier where the baby faces forward  but I prefer the face to face with my baby because I like to communicate with them (and it’s not like they can’t see what I see). With Milo it was great because of his visual impairment, I can talk with him and tell him everything I see. With Matilda’s hearing impairment, I can sign and she can read my lips if needed and I could talk into her good ear. You can throw the Ergo in the wash and it maintains its shape. I got the infant insert, the teething pads, the winter weather cover, and recently we got the rain cover (for our recent Disneyland trip and it kept Owen completely dried).

2. Solly wrap. I discovered this with Owen and so wish I had it with the other two. I have seen bunch of wraps since Milo days but was never really a believer or gave it much thought. But Solly wrap attracted me and so I got it and I love it. It took me some time to get the hang of it and I have used it more than the Ergo since it’s super easy to stuff it in my bag and it’s nice and soft against my clothes so I don’t have to worry about rubbing against my clothes and causing pilling action (Ergo does that, depending what kind of clothing I am wearing). When traveling or shopping, I use the Ergo since it has pockets and I can stuff my wallet in the pockets. The only thing that gets me about the Solly wrap is that it’s super long and when I am putting it on (outside my home) I have to make sure I am in a somewhat clean place since it touches the ground when I am wrapping, but still, I love it. And the owner, Elle is pretty awsum.

Bath time:

Primo EuroBath. We got this for all three kids and we love it. The only down side is that it’s pretty large but if you have the room (we put it in our shower), it is worth it. We use it from when they are 1 month until they are 3 years old. It’s great.

High chair:

With Milo and Matilda we did the Fisher Price rainforest high chair. It worked and the kids sat in it but I was never too fond of the bulkiness and the size. With Owen we got the Stokke Tripp Trapp in green and we have liked it so far. It took a little time to put it together but we like the size of the chair and it fits around our dining table well. And this is a great chair to invest in since it grows with the kid.

Other supplies:

1. You should invest in a nice bath towel since you will be bathing your child daily (I hope). We were gifted a DwellStudio hooded bath towel when Milo was born and we are still loving it and using it. The size is prefect and it washes very well in the washing machine.

2. Good size swaddling blankets. We use nothing but aden+anais (I think everyone is) for bibs, burp cloths, and blankets.

 

 

 

3. Boppy. I love it. I want one in every room and I highly suggest taking it with you when traveling especially for the plane ride. It can save your back and your baby can sleep on it on the plane.

4. Diaper bags. We had Skip Hop diaper bag for the first two and we mostly used it to hang off the stroller but with my third, my husband got me PacaPod (I got the Hastings-driftwood backpack) and I LOVE it!!! It’s amazing and that little thing can hold a lot of stuff and it’s super light. I would switch up my bags sometimes and for the exact same amount of items, my other bags would be super heavy but for the PacaPod, its so light. It can be easily attach to any stroller. It’s definitely worth the investment. Go get one.

I think this is a good start. I can write more later about clothing for both babies and nursing moms or any other good finds. Please feel to comment and tell me what is or was your favorite/must have items.

 

MY VERY FIRST SOLO TRIP WITH MY LITTLE GIRL.

Dress: Zara Kids.
Top: Milo’s Hanna Anderson onesie | Pants: Gap Kids.
Top: MUJI
Dress: H&M | Pants: Mother Care.
T-shirt: JCrew Kids | Dress: Hanna Anderson | Shoes: Salt Water

It’s long overdue but I am finally here to post about my trip. Matilda and I went away for 3 weeks and we had a really great time. I am so glad I did that and I wanted to stay longer because it was SO nice, but of course I was very anxious to get back home to see Milo and my hubby. Milo did great when I was away and he went and did all sorts of fun things with dada. Before I left for my trip, I hid many surprises (little goodies) around the house for him to find. I would hide a note or a card and inside each note/card, it will give him a clue to look for a goodie.

 Matilda did amazing on both flights. She slept for 4 hours out of the 15 hours on the way out and she slept for 6 hours on the way home. I am very lucky to have both my children to be great long flight travelers (let’s hope this will continue). I didn’t take much pictures of Matilda and I when we were out and about since she is always in the Ergo carrier and I am always carrying something (and of course I am constantly wiping my sweats away). But these pictures are from our trip as most of the trip consisted of us eating yummy food.

 I will be back for more posting and more news. I swear. I have much to share.