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.

How we Disney our way around Disneyland.

We decided last minute to surprise the kids with a trip to Disneyland since both Milo and Matilda had their surgeries and we wanted something happy for them, especially before Matilda’s next surgery.

We started the conversation at dinner with what we should do for this long weekend and ideas were thrown and my husband suggested going to Disneyland. The kids did not have much reaction so I said the same thing and the kids did not care much for it and went on suugesting local fun we could do. My husband and I gave each other glances of this is totally not what we expected and I had to say – “kids, we ARE going to Disneyland this weekend, really. We want to surprise you and that is what we are doing this weekend.” There was a pause and then Milo’s mouth was wide open and then I looked over at Matilda who had her head down and started whimpering and I said what is wrong? Does your ear hurt? She looked up and with tears coming down her face and in her crying voice, she said, “I am just so happy that is why I am crying.” I was so happy when I heard her say that! Milo’s reaction was screams of excitement; and Owen realizes what was really happening and started cheering. The kids had to ask us several more times to confirm that it is really happening and that we are going to Disneyland.

Matilda’s reaction is what you see on social media and I do not know how people capture those moments on their camera because if I had the phone pointing at her when we said it, I feel like it would ruin the real reaction. But her reaction was truly priceless and so social media on point.

Ever since we were told by Milo’s O&M (Orientation and Mobility) teacher to ask for the special disability pass for Milo, we have done so in each visit. The pass does not allow us to pass the general line, it’s more like a virtual line. We receive a return time for attractions based on the current wait time from one of the Disney crew. But with the DAS pass (Disney‘s Disability Access Service), we can enter the ride in the accessible entrance where it helps ease Milo’s anxiety since he does not have to worry about the crowd rushing to get on and off the ride in the dark and he has a wider space to maneuver with his cane. As he gets older, it also gives him a sense of independence where he can feel like he can do it on his own like everyone and not having us to hold him and rushing him through the crowds. We still have to give him verbal cue to find his way around and into the ride but it is with much more ease. But I have noticed that with each visit, Disney relation makes it a little more difficult for us to get the pass. Milo questions each time why I have to explain in such details as to why it helps him since in his eyes, he sees the need to use it especially when we are not trying to abuse it at all. I know it is one of those topic that is hard since there are people that do abuse it which makes Disney to be more suspicious each time. Tough call.

As the kids get older I realize it is harder and more challenging for them to work their way into everyday life because sometimes we all forget of the possibility of invisible condition that someone might have. For example, when we eat at the hotel it is always buffet style. We walk through with Milo on where everything is and what has peanut (he is highly allergic to peanut) and then we let him go and get his own meal. Many occasions I have seen adults (not aware that Milo is legally blind and has no peripheral vision) glare at him because Milo would be too close to him/her or Milo would turn in the direction where the other person might be going.

It is tougher to navigate across the park at night with his cane so Milo is usually with me or my husband and we would talk him through of what is coming up and telling him the fun things around us. If my husband is with Milo, then I would be pushing Owen in the stroller and have Matilda with me. It also gets tough with Matilda too since with with the crowd and being outdoor, it is hard for her to hear us (Matilda is hearing impaired). She gets distracted with all the visual appeal and she is not always holding my hand and we have to make sure she is close by otherwise it is difficult for her to hear us calling her. We make it work and we have this unsaid plan of what and where each person should be. But as the kids get older and want more independence, I worry about what they will do when they are out with their peers.

With each trip (we tend to go at least once a year), Milo is finally starting to enjoy Disneyland since he is finally getting used to what to expect in each ride and being less anxious since he knows what to expect. When we do visit, we try our best to go during low season (mid January) but it is getting harder to take time off from school since the kids are getting older. With the new Star Wars land opened, it’s probably much harder to find an off season.

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.

 

We got alone time: local getaway.

 

Saying goodbye to these two as we head out for a long weekend without them.

I was able to plan a long getaway weekend with my husband and it was so hard to figure out what we would do for 3 nights 3 days because there are so many things we want to do. The first time we did a getaway was for one night and one day and that was SO amazing and we understood how great it was to have us time. 

There were so many choices and so many places we want to stay at but we had to make sure we are not too far away in case of the kids and since Milo was at his first away camp we wanted to be close to him as well. We really wanted to take the opportunity to stay at Point Ranch Inn or Ventana Big Sur but unfortunately they did not have any rooms available on the nights we wanted.

Had to stop by the installation, Into the Clouds by FriendsWithYou at Westfield SF Centre.

We had to stay close to Napa for our last night since we had to pick Milo up from his away camp the next morning. We played with the idea to stay at Napa/Sonoma/St. Helena area the whole trip but we couldn’t find much activities to do for that many days. Finally we decided to stay 2 nights 2 days in the city and our last day in Napa. It turned out to be a perfect combo. We made dinner plans with our friends each night and during the day we shopped and visited all our favorite eatery and just walked around the city (walking around is so nice with no kids).

                                            Our view from our St. Regis room.

                                                               Vintage House.

We ended up staying at the St. Regis again for our city part and we stayed at the Vintage House at Yountville. Both places were great and very convenient location.

It was our first time staying at the Vintage House and the location was amazing, walking distance to Yountville and we got ourself a little bungalow which was a very nice experience. We even put down Vintage House as a place that would be good to stay with our kids.

I am already thinking where we could go next time when we get a chance to do a little getaway sans kids.

 

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.*

Away Camp, checked.

 

We made the decision earlier this year to send Milo to his first away camp this summer. We never really planned for an age when he should be doing a going away camp until we were introduced to the Enchanted Hills Camp (EHC) last year.

Milo was a little apprehensive about going but we really didn’t give him a choice. We would consistently tell him that this would be a very exciting adventure for him and that he would be meeting new friends and he is at the age when he should be experiencing away camp. Milo has several friends that are doing it for their first time this year and I think that got him really excited about doing it as well.

One of the main reason we are sending him to an away camp because Milo needs to learn on being on his own and to do things for himself. Another big incentive is that this coming school year, his grade goes away for a week for Outdoor Ed. To ease Milo’s nervousness  (and mine), I was able to arrange a quick visit of the camp site prior to his stay. Due to the Napa fire last year, the cabins for the campers were destroyed along with some other facilities. EHC made some temporary tents for the campers and brought in some porta-potties (eek!). 

It was good that we were able to visit the camp site so that we know what we need to do to prepare and it eased both Milo and mine’s anxiety of what it will be like. 

I packed all of Milo’s belongings in clear 2 gallon bag so that he can see everything clearly. All the clothing that we packed are slightly stained or that he has almost outgrew so Milo doesn’t have to worry about getting them dirty or having to save them. I bought him a shower caddy to store all his bathroom related items (shampoo, lotion, toothbrush, washcloth, etc) so that he can just pick it up and go. I packed him some extra large garbage bags (for things he want to throw out) and a laundry mesh bag (for clothes he want to keep). Milo ended up throwing out all the clothing he wore so he pretty much came home with less stuff. 


Matilda and Owen saying “goodbye, we love and will miss you so much” hug before Milo and I go off to camp.

Milo and I having lunch before I drop him off at camp.

Milo spent a week at camp. He was pretty nervous when I dropped him off that day and I pretty much kept thinking and wondered what he was doing all the time and paranoid that I would get a call from camp. We both made it through the week and he was a happy camper when we went to pick him up. Phew! Milo survived and so did I. Milo took a very long shower after we got him and with fingers crossed, we hope all the rebuilding will be done by next summer at EHC.

Milo at pick up at Enchanted Hills Camp.

I plan to send Milo back to EHC next year and I do wish Milo could go on an away camp with his peers in a non visual impaired camp. But as of this moment, I do not think it will work well for Milo since a lot of the away camps involved lots of activities that would not be good for Milo or be difficult due to his vision impairment. And one challenge that I think Milo would have is to navigate around the camp site especially in the evening and night time when everything is dark and having no aid to help him. 

*EHC is an amazing program run by the LIghthHouse for the Blind and Visually Impaired and please consider making a donation to them. (I am asking on my own on this donation.)

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