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 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.
xoxo
me
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.
We decided to get tickets to take Milo to see Yo Gabba Gabba this November when they are in the Bay Area. It occurred to me that I will need to get front row seats for Milo and Matilda due to their vision and hearing impairment. I called San Jose Civic about accessible seating and they directed me to tickemaster.com. The process turned out to be super easy and I was told that my accessible seats are on the front row. I was thrilled and told Milo how we are going to see them and he was ecstatic. Later that day, I went to check the seat map of our seats and discovered that the tickermaster representative had booked us at the Fresno location!!?? I called ticketmaster.com and luckily I was able to get a refund. (It almost seemed too easy when I did it because they made a big point about how the tickets are nonrefundable and blah blab blah.)
FORESHADOW OF THIS LITTLE EXPERIENCE: THIS WAS JUST A PRACTICE RUN AS TO WHAT IS TO COME.
Here comes the craziness and I will try my best to refrain from using bad mouthing language:
CALL TO TICKETMASTER.COM – OCTOBER 26, 2011 AROUND 9PM (SPOKE WITH KIMBERLY):
I called to get tickets for the correct location and was told that there were no accessible seating for vision and hearing impairment for this event but they have wheelchair seating on the balcony level in the back. WhatWhatTheWhat was in my head so I repeated my question and I was told the same thing and that I should contact the venue because it is up to them to release those seats. AND she made a point to tell me (more than once) that it is very rare that they get requests for accessible seating for vision and hearing impairment. I did not respond to her because I was confused and surprised by her comment and not sure why she felt the need to say that to me. Was I suppose to say oh in that case never mind, let me just get some regular seats for my vision and hearing impaired kids so that they can go and sit super far away and won’t be able to see or hear a thing.
CALL TO SAN JOSE CIVIC BOX OFFICE – OCTOBER 27, 2011 AROUND 9AM:
I asked to speak with someone that can help me with accessible seating and he told me that they have no control of the seating arrangement and how it is up to the producer of Yo Gabba Gabba and I should call them to complain. I told him that I called ticketmaster and they informed me that the venue itself should be able to accomadate accessible seating for me. He then told me again that he cannot help me because they are not selling tickets to this show and that I need to call ticketmaster.com or call the producer of Yo Gabba Gabba and question them about accessible seating because they are the ones that have the ultimate control. Our conversation ended. I was pretty confused and a bit frustrated at how difficult it is to get accessible seating. It reminded me of speaking with lame-O airline representatives and how you get a different answer for the same question based on who you speak with.
I took a break since I had to take Milo to his weekly swim class. On the way, I kept thinking how I should approach this because it’s a bit ridiculous how NOT easy it is to get accessible seating and how ironic it is that it’s so hard to do it. AND the thought of reaching out to the producers of Yo Gabba Gabba did crossed my mind because I want to share with them how hard it is to get accessible seating and how they need to accommodate since it is part of the ADA law. I decided that I will call San Jose Box Office again to get more information about accessible seating and how it is arranged so that I can have all my information and start my complaint and get my answers. At this point, my goal was NOT about getting accessible seating for my kids, it’s about fighting for my kids’ rights. (I know it sounds kind of like a breakthrough point in a movie but unfortunately this is FOR REAL people.)
CALL TO TEAM SAN JOSE – OCTOBER 27, 2011 AROUND 10:30AM:
Instead of pressing 4 to be connected with the San Jose Box office, I pressed 0 under all other information (I was hoping that there would be someone else that I can speak with aside from the person that I spoke with earlier this morning at the box office). Claudia answered and I asked her who should I speak with about accessible seating for an upcoming venue. Right away she told me I should call the box office and Kevin or Peter can help me. She kindly transferred the call.
CALL TRANSFERRED TO SAN JOSE BOX OFFICE – OCTOBER 27, 2011 AROUND 10:32AM:
I started out the conversation again with can I please speak with someone that can help me with accessible seating. I was told by the other end that he was the one because he did not transfer me to another party and he responded by a yes. I told him that he might have been the person that I spoke with earlier in regards to accessible seating (I knew he was because I recognized his voice) and I would like to get a better understanding on this subject. He confirmed with me that I did not speak with him earlier (but I am sure it was him.). I told him that I want to find out more about accessible seating for the Yo Gabba Gabba event and he quickly told me that I will have to talk with the producer of that show because they do not sell tickets to this show and that San Jose Box Office has nothing to do with the seating arrangement and I should call ticketmaster to get the ticket. I told him that I did talked with ticketmaster and was told that I need to talk with the venue because they are the one that has control over the seating arrangements. Again, box office guy told me that he cannot do anything and that I need to call the producers of Yo Gabba Gabba. (As you can see, this is pretty much the same conversation that we had earlier that morning.) I then proceed to ask him how does accessible seating work for any shows that takes place at the San Jose Civic and I shared with him that I was booked by mistake for the Yo Gabba Gabba show in Fresno and they had accessible seating and it seems strange that the producer would make arrangement for Fresno location to have accessible seating but not at the San Jose Civic. The box office boy’s voice got very irritated and told me to stop calling him about this because 1) he cannot solve my problem and 2) he does not work at Fresno location so he has no idea what they do. With that being said, he pretty much confirmed with me that he was the one that I spoke with earlier in the day because he told me to stop calling him about this subject. I was too pissed off at this point to point this factor out to him. I told him that 1) I am not asking him to solve my problem 2) I am simply asking and gathering information as to how accessible seating is arranged so that I can have all the correct information and make complaints to the appropriate party and 3) he needs to calm down because I am not blaming him for anything. The all worked up box office guy kept on going off about how I need to stop calling him and that there is nothing he can do and how if I want to discuss SJBroadway he can tell me all about that. I pretty much tuned out at this point because I was getting very upset. SO, in a very calm voice, I said to box office guy, let’s get this straight, if I am to come into the box office today in person and told you that I need to get tickets for accessible seating for Yo Gabba Gabba you would tell me sorry I cannot help you. He said yes that’s right. I knew with that I was so done with him and that this is turning out to be even more crazee than what I expected. For reference sake, I asked him for his name and he did not say anything. I asked him if he was Kevin or Peter and he paused for a bit and said Kevin is not here. I said you must be Peter. He paused again and said no. I asked him again for his name. He paused and said there is no need for you to know my name because I am not selling you anything. I said are you refusing to tell me your name, he said yes. I told him that your name must be ASSHOLE because you are a complete ASS on this and he better read up about the ADA law. He was going off about something but I tuned out and was livid and almost in tears because I cannot believe the words that came out of that guy’s mouth.
CALL TO TEAM SAN JOSE – OCTOBER 27, 2011 AROUND 10:45AM:
I chose option 0 again because I want to find out the name of the box office guy and to file an official complaint. Claudia answered and I reminded her that I had called earlier and I told her what had happened. She was quick to apologize and assured me that she will go and find out the name of the guy and she will put in the compliant. I was a bit emotional when I was speaking with her because I was filled with so much frustration. Claudia told me that I should talk with Peter who is the ticket manager and he is extremely nice and would be able to help. I thanked her and was put on hold to be transferred to Peter.
TRANSFERRED TO PETER, TICKET MANAGER AT SAN JOSE BOX OFFICE – OCTOBER 27. 2011AROUND 10:50AM:
I got his voicemail.
CALL TO TEAM SAN JOSE *OPTION 0 – OCTOBER 27. 2011 AROUND 10:51AM:
I informed Claudia that I was not able to reach Peter and she told me I should leave a message for him and that Peter is extremely nice. She suggested that I should mentioned my bad experience with the box office guy to Peter.
TRANSFERRED TO PETER, TICKET MANAGER AT SAN JOSE BOX OFFICE – OCTOBER 27. 2011AROUND 10:52AM:
Peter answered and I told him that I need help with accessible seating for Yo Gabba Gabba and before I even told him what had happened, he quickly told me that yes he can help me even though they do not sell the tickets directly. I then told him what had happened and that I was told that they are not able to help with accessible seating and he confirmed with me that it is not true. He said he is able to look at the same seat map as ticketmaster and he saw available seats for accessible seating. Since he cannot sell tickets directly from his box office, Peter put in a request for Kathy from ticketmaster to contact me with my reserved accessible seats. I think at this point I was relived because there’s actually someone that is reasonable and know what the hell they are talking about. But at the same time I think I was still thinking about that nasty useless box office guy and how stupid it is that I had to go through all that just to get seats.
All this ended pretty much when Milo was done with his swim lesson and I am sure parents and teachers at the pool were wondering what was wrong with me since I was on the phone and was so emotional. Milo had no idea of course what happened.
When I got home, I called Claudia to thank her for her help and to ask her for the name of the rude ass box office guy. HIS NAME IS MICHALE. Claudia assured me that a verbal complaint has been made to a supervisor and that an internal talk has happened and that he is or has already gone through some people skill training. (In my opinion, Michael needs more than people skill training.) She again apologized and said that box office staff should have excellent customer service and she did not know what happened.
CALL FROM KATHY AT TICKETMASTER.COM – OCTOBER 27, 2011 AROUND 12:30PM:
Kathy got Peter’s message and helped me processed the accessible seat tickets that Peter had reserved for me. I asked her why is it that Peter can see the availability of the accessible seating in his system but the representatives I spoke with at ticketmaster.com could not. She said that she could not see them as well. I was confused because Peter told me that his system for the seating map is the same as ticketmaster.com. Why do they make it so difficult for people that need accessible seating to get a ticket? It’s already annoying that people that needs accessible seating have to call or email versus getting it online like a regular seat. And since San Jose box office does not sell tickets to this show directly how will people get accessible seating if ticketmaster cannot see those accessible seat or if they get someone like Michael that is no help. ANSWER THAT TICKETMASTER.COM AND SAN JOSE BOX OFFICE??!!!! Please refer to this ADA requirements on ticket sales ticketmaster.
CALL TO PETER AT SAN JOSE BOX OFFICE – OCTOBER 27, 2011 AROUND 12:50PM:
I called to say thank you to Peter and told him that I got my tickets. He apologized for my horrible experience and told me that they had talk about it internally.
Yet again, I learned a lot via my kids’s disabilities and how hard things can be and will be for them and for many out there. When things like this happen, I really wish I have more time to get involved to help. But as of now, all I can do is to be a constant advocate for my children and to blog about it so that others can see and will pass it along. I will for sure share this eperience with Early Start’s teachers and parents. Please kindly re-tweet this or share this on your blog and pass it along. I have every intention to email this to the producer of Yo Gabba Gabba, to City of San Jose, to ADA.gov, to my local news team and to other places that I can find along the way. If you can think of anyone else, tell me. I love sharing!
THIS SHOW BETTER BE GOOD.
milo had an EUA yesterday morning and when the doctor came out and said let me tell you the good news first, i thought, oh crap. the cornea infection in his left eye(home of the prosthesis shell)cleared up so we dont need to worry about that anymore and at some point in the near future, another prosthesis shell will be placed back in (not looking forward to that). as for the right eye, his pressure is still higher than what it should be so the doctor is jacking up the dosage on one of his eye drop to see if that will help. (he suspects that the existing valve is blocked by the growth of his iris.) we will go in for another EUA in one month and if the pressure is still high, the doctor will try to pull back his iris and if that is not possible, a new valve will be placed. i guess milo had a good run on his ahmed valve since he had it placed when he was 3 months old and its actually pretty unusual for it to be working for so long for a child. we got lucky and i really hope that whatever happens, his pressure will be under control soon because that is his only seeing eye and its already slightly damaged (the ophthalmologist estimate about a 20/100 vision + tunnel vision due to glaucoma).
but aside from this, milo has been great since his last EUA. with the prosthesis shell out of his eye and his infection being detected and treated, he hasnt had an episode of eyes shutting or painful breakdown and he is not sensitive to light as much. we have been doing our fun summer-ventures and its been really nice to see him so happy.
he will be starting a new regular preschool end of august and we got him a new big boy lunch bag (he saw the catalog and said thats what he wanted and i thought it would be a great little new thing for him for his new big boy school).
matilda has started eating solid for almost a month and she loves food so far and i am loving my Beaba food maker. it makes making food so much easier. i want to use it to make smoothie for myself every time i am making fresh fruit for her.
the summer is not over yet and the weather has been great this year (sorry east coast peeps)! we will continue to check off our summer-venture list. yeah.
milo had his EUA yesterday and the good news is his doctor found the reasons behind his pain. the pressure on his right eye is way higher and he thinks its because his implant valve is clogged. he is giving us two new eyedrops to use to see if that helps. if not, then other measures will have to happen like readjusting his existing valve or replacing the exiting one. as for his left eye, his doctor took out his prosthesis to check and found that he has a pretty bad cornea infection. the prosthesis is out of his eye and we have an antibiotic eye drop to give him every two hours. a culture was taken as well to define this infection and hopefully its nothing too bad. we were a bit relieved that they can explain his reasons of pain but the same time we feel horrible because he has been in pain all this time not because of him adjusting to his prosthesis but also because there was an infection AND his right eye pressure is way high. it makes this even more tricky in the future when he has to get his prosthesis back in. what happens when he complains of pain? is it the prosthesis or is he getting another infection? and is the prosthesis causing the infection? is he more prone to infection? can we do anything to prevent/decrease his chance of getting an infection? wheres is this 24hours hotline to call when you child gets prosthesis? it sucks because you cant really tell whats going on and its not like we can tell the infection to hold off on attacking his eye until he is well adjusted to his prosthesis. if i have the power of the aforementioned, i think i would be doing greater things and i would have a blog called I HAVE GREAT AMAZING POWER AND I AM NOT AFRAID TO USE IT & NO I AM NOT A MAGICIAN OR A GYPSY. well, thats kind of a long name but whatever, you get the point.
back to reality – i am SO glad that i requested this EUA because otherwise we would not have known that his pressure in his right eye is so high. the good thing is that the high pressure has not caused any nerve damage and also the cornea infection has not caused any permanent damage as well.
since his EUA in may, milo pretty much has a bad day once a week where he is in bed all day and no food, and sometimes it will last longer. about 2 weeks ago we found out of a family screening* of Cars 2 and we told him all about it and he was insanely excited for that day to come. the two days prior to the event, his eyes were feeling better and we were thrilled. the morning of the event he woke up not so great but milo was super brave and suck it up and kept telling us that he was okay even though you could see him blinking his eyes and moving his face a lot to adjust the discomfort of his prosthesis shell. he had couple pain related scream but we all made it into the car and we were all very excited to share this first time movie seeing experience with milo. as soon as we parked milo screamed and cried. we sat in the car with him for 40mins trying to talk him through it and explaining to him that if it hurts too much, we can see the movie at a later date when he is better. milo was very set on seeing it and he kept asking us to wait for him. his eyes were closed the whole time in the car aside from the several attempts to open which all ended with him screaming in pain. eventually we had to leave. he was extremely upset and disappointed. my hubby and i were heartbroken because we were excited to see him to be super excited to see the movie.
i HATE that prosthesis shell SO much because it is completely controlling his life and its preventing him from doing things. my hubby and i are making sure that milo knows that it is not his fault that his eyes hurt and that it is okay if they hurt (even though it sucks), AND most importantly, we need to make sure that milo does not blame himself for his eyes. its all sounding very grown up. sometimes i take a step back and remind myself that he is only three years old and he has so much to deal with and that he will have so much more to deal with.
milo is the toughest and bravest superhero i know and probably you know.
lets hope this eye dropping eye drops will take away the nasty cornea infection on the left eye, his right eye pressure will be under control and he wont be light sensitive anymore. we will have another EUA in three weeks. until then…or as milo likes to say now, THE END.
xoxo
p.s. – matilda is doing well and growing up so fast. she started eating solid the day she turned 6 months old. she loves to smile and she loves watching milo. i started signing with her awhile back with everyday routine basic(milk, diaper change, bathtime, more) and now i am trying to do more. hopefully she will start signing soon!
FOOTNOTES:
* family screening – movie theater would host these every now and then (i think they should have these more especially in the summer time and have more than just one showing too) where the lights would be left on and they would lower the volume so the younger kids would feel okay watching the big screen.
ONE & TWO. matilda sitting inside a step chair. my mom’s arm is holding her up. i recently purchased this H&M hat and i love it on her so much that i bought another one for her growing head. THREE & FOUR. matilda started teething when she was 4 1/2 months old and they started showing couple weeks ago and its been so hard to get it on film. but here they are!
matilda has been doing great. i have been taking her to her weekly baby class and milo tags along as well. i cant believe she will be 6 months this sunday. i wish i can keep her at this age for another year because she is so cuddly and giggly! they do grow up so fast. seeing matilda makes me wish that i can turn milo back to around her age. BUT with her 6 months coming up, it means she will be starting on those blend cereal. i would have started her earlier because she did showed interest in food but since milo has a high peanut allergy, her pediatrician recommends to wait till she is 6 months old. AND i decided to get a BÉABA to make life easier.
ONE + TWO + THREE. matilda loves to watch milo and i’ve been encouraging more brother sister time. i am asking milo to include matilda into his activities and asking him to talk with her and to show her his toys. we are teaching milo to make sure to make eye contacts with matilda when speaking with her, and to make sure that she can see his mouth when he is speaking to her. milo hasn’t quiet done that yet but at least we are starting to get milo into the habit. milo loves superheroes and matilda’s hearing impaired teacher came up with sign language for all his superheroes. as you can see in the pictures, matilda is highly attracted to the snack (PRETZ) that milo is eating. and milo is highly engaged in the iPad (the iPad has been a lifesaver ever since milo had his prosthesis. it is the one thing we still can use to get him to calm down and to open his eyes.)
milo is still dealing with his prosthesis. he pretty much has a bad day* once a week and he still complains about his eye or eyes everyday. he is still light sensitive and his vision teacher gave him a pair of fitover** sunglasses to put over his glasses (we called them his superhero sunglasses) and he would wear those and a hat when we go outside but a lot of times he would still keep his eyes closed until indoor. his prosthesis is still bothering him and its been a month since he had that put in. we talked with his occularist several times but unfortunately he doesn’t have any immediate solutions for milo and he said that it is unusual that its taking so long for him to adjust to it.
due to recent bad eyes drama, i called his glaucoma doctor to schedule an EUA***soon rather than in september. i hope by then he is able to tell us whats up and maybe even get a good look at his prosthesis since the occultist wont be able to make it.
my husband and i are sometimes at lost as to who we should go to for these questions since milo has three main specialist. if only they can all check on him while he is put under at his routine EUA, it would be so much easier. or better yet, if i could just have a little dinner party once a month for them so we can talk and discuss and not have to worry about them having to rush out to see another patient or teach a class. i guess thats what you get when they are such great doctors. i should start some kind of dinner-party-with-your-kids-doctor-thing. every parent deserves to learn as much as they can about their kids and their conditions. i think i am on to something with this dinner party idea. if any doctors are out there, what do you think?
as i am writing this blog, milo is having a bad eye day. we were on our way to the SF Zoo to meet Captain America and five minutes into the car ride, milo started feeling horrible. we made it to the zoo at 9am and with loads of tears, he kept saying he wants to go see Captain America. after a hand shake and a picture, he broke down and just want to go home and go to sleep. he has been in bed all day and no meals. he tried a bunch of times to open his eyes but ended with screams because of the pain of his prosthesis. he is a super brave little boy. i just hope tomorrow morning will be better.
wish me luck.
FOOTNOTES
*bad day means that theres some sort of breakdown where he would shut down and wants to go to sleep and not open his eyes.
**milo’s vision teacher said that NOIR carries great sunglasses for vision impaired kids.
***Exam under Anesthesia
heres a bit of milo’s update since my last report after his recent procedures. milo is definitely doing better. he still has his good/bad days and we haven’t yet had a day where he hasn’t complained about his eyes. we actually went back to his glaucoma doctor last week to check on his good eye (right eye) because it was tearing a lot and it was still swollen. it really shouldn’t be tearing since he had an eyelid epiblepharon to eliminate this problem. it turned out that he might have caught an infection from the procedure so we were given an antibiotic eye drop to give him for both his eyes 3 times a day for one week. and aside from the tearing he has been super sensitive to lights which he has never been. we were always asked if he is sensitive to lights due to his glaucoma but it was never a problem until now. the doctor really didn’t know the reason and couldn’t tell us much since it was a battle to get milo to have his eyes open at the doctor’s visit. we just have to keep an eye on his eyes and if anything, he would need another EUA for further exam.
the antibiotic eye drop is working very well. his right eye is no longer red and the tearing has gone down drastically. BUT he is still light sensitive. we pretty much have the blinds in the house closed when its uber sunny. when we go outside with him he closes his eyes until we are indoor. milo’s ECE teacher gave us a pair of sunglasses to put over his glasses and they help especially when we are in the car.
and here comes another whole new thing on top of all this drama with milo since his first prosthesis fitting back in april. with all these new recent activities and trauma, milo likes to cry all the time about everything and gets upset pretty quickly and often. it usually starts with him complaining about his eyes hurting and from that point on, its all about him not liking this and that and all he wants to do is go to sleep. its a constant battle. we cant tell anymore if he is trained to cry so he can get what he wants (because thats what we did when he first had the horrible experience with his prosthesis to get him to calm down) or if he is really hurting. we know that there are times that he IS in discomfort/pain but sometimes he can shut it off so quickly that it makes you wonder. i feel torn at times because i want to give him credit for all the crap he has been through with his eyes his whole life, but at the same time, i cant have him acting up and using his eyes as an excuse. it is a very fine line. SO, we are still educating him about his eyes and all that is going on and what he can do to help his prosthesis to feel better (i.e. – blinking his eyes when he wakes up so that it wont feel as dry or i like to use the phrase – you got to blink your eyes to wake up your shell.). we are being even more patient with him especially when it comes to his eye drops because we want him to be in a good mood so that he realizes that they are not horrible. i got him to believe that eye drops feel like a tickle to your eyeballs. we talk about his various emotions and making sure that he knows we acknowledge them and kind of talk it out with him every step of the way. unfortunately with milo, we are always making good progress on his milestone (i.e. sleeping habit, eating habit) but then we always have to start all over because of a bad doctor’s visit or some eye changing event. its hard. for him and for us. we want to just give in and say yes to everything but at the same time we want milo to learn to grow with his eye conditions as a regular thing since he has a whole life of eye events.
if anyone out there wants more details on how to do eyedrops on your kid, please feel free to ask me because i can share my tricks with you.