John had this for lunch the other day. He sure got creative with leftovers!
We saw this rainbow from our back yard.
This is what I wore to my Grandfather's wake. Instead of black, they wear light colored clothing preferably white. Out of respect, women should cover their heads.
Rest in peace Zeda. We love you.
Rest in peace Zeda. We love you.
Thursday is chore day. Rachel and Sveta mopped the floor. Instead of using our mop, this does a better job, and the girls got in their physical education.
This is Dennis after his latest surgery. Gosh, do I love this boy. He is such a sweetie.
I have not made up my mind about how his eye looks. We will be meeting with the cranial facial team in November to discuss future surgeries. The extra skin that he has on his upper eyelid now might allow room to build up his orbit with either bone or fat. If this happens I think his appearance will drastically change to give a more normal appearance. Meanwhile, I hope that the doctor at his next followup will have the same concerns that I have. Doesn't his eye look droopy? Why don't his eyelashes lay right anymore? Would it be better to reverse this last surgery?
At this point, I feel like I am walking on eggshells with the medical community. Everytime I have spoke up about my concerns-- doctors have just dismissed us from their practice.
First time was when I had Jonny at home with a midwife and I refused additional blood tests to check for diabetes that were ordered by our primary doctor just because he looked tired the day I brought him for his newborn screening. I said I wanted to wait a few days to see if his energy increased (I had been nursing him during his heel poke) before he had more blood tests-- and then she dismissed us from the practice
because I questioned her authority.
The second time was when the first eye surgeon did Dennis' eye evisceration and I questioned him when he said there was nothing else that he thought could be done for Dennis' eye. He dismissed us too.
The third time was just recently when we went to a new primary doctor and I laid out all of the referrals to specialists we would need. At first she had been willing to be Dennis and Alex's doctor, but as soon as I spoke up, she suggested that we find another doctor.
For now, I patch his eye when he goes to school and I take off the patch to let his eye breathe when he
is at home. Dennis is happy either way.
Kids that are in kindergarten are still making fun of him on the bus-- and a certain little girl is the one who is instigating it all.
It's probably wrong of me to think anything other than-- poor little scared girl. I guess I am wrong.
32 inspiring thoughts:
I would say the first reaction was out of fear. And I would say this reaction is out of fear of the unknown, too. BUT at this point I would say Dennis is being bullied (preying on the weak and drawing others in to her fear). And I would ask the school to either let you contact the guardian or they need to address it another way pronto. She may even need to be removed from the bus...or Dennis could switch to another bus.
Ah yes! Speaking up to Doctors. It's happened to me twice. We just last week got dismissed from Curtis's psychiatrist because I told him I didn't want anymore meds thrown at Curtis. We needed to stop all meds, start with a clean slate and research what was out there so we could help him effectively. He said, "I am the Dr. and you need to find another Dr. if you don't like my medication decisions!" So...off we went!
Christine, I have been following your blogforever and just wanted to say that you and John are doing a great job with the kids. As for the bullying i dont think anyone has a right to tell you how you should feel, bullying is not ok no matter who is doing it, the "scared little girl" is apperently not so scared if she can continue to pick on Dennis and hurt his feelings. Sorry that you are having to deal with this.
Sarah
What a bunch of pompass garbage! You are better of without doctors who do not see you as a team member. I have never gone to a doctor who did not allow input and a LOT of it! Otherwise, I'd be out the door!
It is the doctor's fear and insecurity.... :p
As for the little girl.... wrong behavior is wrong behavior. It matters not why.... she needs to be told in no uncertain terms to lay off, as do the other children.
We tolerated this kind of garbage for WAY too long! That is EXACTLY one of the reasons we pulled out of the school system. An ADULT could NEVER tolerate what kids throw at each other. It is NOT the real world! It is NOT!
Funny because I posted about Jasmine and the same thing with doctors a couple of days ago.
As an outsider, I think his eye looks better than it used to be. Not perfect yet, but much better!!!
Wow! Your doctors are bullies over there. I've only heard of this happening once to one of my friends here, but I know there are a few around. Most doctors here seem to respect their patients views and concerns. They often have posters of patients' rights in their waiting rooms. I hope you have some joy this time.
I think his eye looks like a big improvement, but one photo is not enough to judge and you need to be comfortable with the outcome.
As for the little girl. . . poor Dennis. I get choked up when little kids are hurt, tormented, bullied, whatever. The first comment looks like good advice.
Christine,
I do think his eye looks better. However, it does look droopy and looking back at the old pics, his lashes don't lay natural like they did. Maybe not reverse it, but ask if they can lift it in the middle or take more skin off the top of the lash so that it is even all the way across. ???? I'm no expert, but I do see what you are seeing and surely they can make it look more natural.
About the bus. Breaks my heart. Maybe she is a "poor little scared girl" but usually those kids are just that, scared...not mean. And it appears that she is bullying and instigating bullying. I would absolutely report it. Absolutely!!!
I know you are busy with homeschooling - is there anyway you could take him to school yourself? I'd still report it to the principal regardless though.
I'll pray for him...and you. You are doing a great job advocating for your children!!!
I was thinking Dennis looked amazing in this pic. What a darling little boy he has turned into. Hope the other kids learn to accept him for the sweet child that he is
Grrr - I don't care how young this girl is - her behavior is not acceptable!
I have a niece who has Crouzons disease, which shows up mainly as a deformity of the skull. She too has undergone so many surgeries, but she also dealt with bullying kids - and even one very frustrating parent in her school.
She's now in college and is doing great, and I know Dennis will too because of the love he gets at home. I do agree with the others that you need to talk to the school about this little girl. Her behavior needs to stop!
Wow, Dennis looks GREAT!! He's always been too flipping adorable, but he's just looking so grown up, such a hardy little man, lol!
As far as the little girl, I say once the problems go beyond an initial reaction/freakout and into calculated cruelty, you are no longer obligated to give her the benefit of the doubt. Definitely stand up to the school's decisions the same way you stand up to the doctors!
I say ditto to the Anonymous who wrote at 7:08 pm, word for word!
Also, I love the updated photos of the children on the sidebar. :)
I am surprised that so many physicians react rather than respond to your concerns. We are told these days to take responsibility for our own health. I really thought that present-day medical professionals were more in sync with that concept. I hope you can find some cooperative physicians who will not be so thin-skinned! harumph!
The little girl needs to learn NOW how to show compassion and friendship, that bullying is unacceptable, period. I certainly hope that the principal, teachers, bus-driver, etc. will cooperate in putting up some boundaries to prevent this for Dennis and any other children. After all, the children are in school to learn, not only academically, but also how to socialize with one another and how to behave under authority.
Dennis looks great!!! I would suspect that his eye is a bit droopy looking because they added some extra skin so they can use it during future surgeries and I suspect that it is still swollen. He is such a cutie!!!
In comparison to Dennis's eye before surgery, it is not quite as wide open, but I wouldn't say it's droopy, either. To me, from what I see in the pictures, it does look a bit more natural (because it's not as wide open as before). Also, perhaps the redness under his eye is causing the illusion of being droopy? Just a thought.
You don't need those doctors then. They obviously are in it for what THEY get out of being a doctor, not for what they can do for YOU (or your family).
Also, my boyfriend of 6 years has Tourette syndrome. Not quite like the movies, but still noticeable to the observant eye.
When he was a boy, it was MUCH worse, and he was picked on by a few who were "wierded out", "nervous" "scared" or just plain mean jerks. So when he was 7, his mom told him to say to those who picked on him AND to those who gave him curious looks but wouldn't talk to him at all, "Hi! My name's Aaron! I was born with something that makes me do funny or strange things sometimes. I can tell you about it if you want. I'm going to go play over (insert area) now. Come on, lets have fun!"
It broke the ice for them and 99% of the kids followed along and were fine with him after that.
Maybe Dennis could say something similar, like" Hi! I'm Dennis. My eye isn't the same as yours and that's ok. It doesn't bother me. Lets go play! ?
Just offering a suggestion. That's all :) I hope that little girl and any future "little girls and boys" are few and far between.
We all love you here in Bloggy land Little man!!
Lana From BC
I do think the eye looks better!! I know when I had "cosmetic" type surgery on my face, it took several months for things to get 100% completely back to normal- for the skin to shrink back (skin takes a while to get bac to its original shape-elasticity, all the nerves, everything. It all takes time. But I truly think he looks better).
I wouldn't worry about being dismissed. He goes to a teaching hospital right? Since the doctors there don't technically have their own practice, it is again policy to dismiss patients. Especially since they are state hospitals. Now a private practice/private hospital- they can do whatever they want.
Sarah
NICE EYELID! Wow the doctor did a really good job, and Dennis for sure is one very patient little boy
His eye looks so much better. You can get that tape off of his skin by using adhesive remover.
His eye looks so much better. IMO, the "droopy" look might very well be swelling -- when my eyelids have swelled due to allergies, they look droopy, as well. I think, also, sometimes, when we are so used to seeing things one way (ie his eye VERY open) it looks off even when it's improved.
In truth, though, as others have said, you never know where you're at until the swelling goes down.
Either way, I'm praying for you and Dennis. :)
This is quite bad. Every student should have the right to be safe from bullying, especially when they are this young. While some may argue that kids need to develop a thick skin, I think that when they are very young and just starting school they should be protected. My husband is a primary school (kindergarten to 7th grade) teacher, and he has seen so many kids get massive self esteem issues from bullying at such a young age. They just soak everything up, and they remember it. You really should do something about this girl. It's not about being mean, its about protecting your son, and other people's kids this girl may target if she is allowed to become a bully. I've been on the other side of this argument, as Oksana depeloped a bit of sass and was quite cruel to one of her classmates. I was horrified that my little girl was a bully! She was in BIG trouble, and I hope she won't act like that again. I hope it was caught early enough that she won't ever be so nasty just because so and so is in a wheelchair and has bad hair and teeth. I definitely worked to teach her tolerance and respect for everyone. 2 years later and she is quite good friends with the girl, so maybe there is hope.
I also want to say as a doctor's daughter, with the most amazing, kind and patient father ever, that like people, not all doctors are so uptight and nasty. Have faith! You will find a doctor who can accomodate your suggestions and opinions eventually!
I would second the others who think that something needs to happen with the girl on the bus. Whether she's scared or just nasty, she needs some education and correction.
As for Dennis's eye, even red and puffy, the shape of the opening is really nice and I kind of like the "wow!" eyelashes. The centre may pull up a bit as it heals. He's a darling work in progress.
Hi Christine,
I don't normally comment but felt I had to. I feel for Dennis so so much about his treatment on the bus. I think a few people have said that at first, yes she may have been a scared little girl, but now it has to stop. Children have to learn that making comments about others for whatever reason is wrong. Is there someone there to stop them and explain this is just not right?? I remember the lady who worked for the BBC with one arm and parents complained!!! It is just so so sad and as one person said....wrong is wrong and if they can't learn it now then they will grow up to be like the parents who are complaining about a lady with one arm!
Dennis is such a cutie and thankfully he has such a loving family around him to pick him up after a hard day! I actually think his eye looks good in that picture, maybe a little red/swollen but I know pictures aren't always a true representation of everyday life, but he looks lovely!
My little boy has been having problems at school recently too, he has an ASD and some physical problems and the children in his class just pick up on his weeknesses. Yet he is the sweetest boy and would never dream of picking on someone else. He asked God the other day why he gets left out and why they pick on him and it broke my heart! It is so hard to explain that he is better off because he is not the type to pick ON someone, and that the bullies are probably unhappy in some way! :(
Loved the idea for Pysical Education!
Laura
xxx
I agree with what others have said, I think the little girl is being a bully and should be confronted with it, no matter her age. There was a serious anti-bullying campaign started here last year, not sure if your district has it as well, but maybe the administrator should be approached.
Bullying is not OK. Demand that something be done to the bully!!! Due to all the present problems that have come up with kids killing themselves because of being bullied schools have put new rules in place. Some schools require the child be sent to counseling if they are accused of being a bully. I am sorry, but if she has continued to act like this I seriously doubt her initial behavior was due to being scared.
Please, please take this as honest advice.
Perhaps it is the way you are behaving or speakimg towards the doctors. You've stated many times in your posts about overcoming how you react towards certain behaviours of your children.
When we are frustrated/scared or whatever we sometimes are unaware of the way we act towards others.
I have struggled with severe medical issues my entire life. Surgeries, consultations and the like. I've never had anu doctor kick me out.
Question me? Tell me something else? Advise me? Yes.
Some doctors are cold, some snippy..just like any other human being.
You need to step back and take a deep breath, and dial back your attitude. Doctors are not your children and they shouldn't be spoken to or treated as such.
Hi Christine,
a kid in my extended family was bullied in school, and her parents took her out for a year and homeschooled her. It turned out well and she's not afraid to try to make friends now. I'm not saying this is what you should do with Dennis, but I am saying that there's no shame in taking him out of a volitile situation be it by a ride to school or some other solution. This bus behavior sounds a little too much like Lord of the Flies to me, it's distressing. I hope that Dennis' natually sunny disposition buoys him through it.
About the doctors, don't stop looking for a good one, and that means someone who listens to you.
I dont' think you should have to be worried about talking to his doc about the droop you are noticing.
Good luck, and best wishes.
K
The eyelid looks slightly droopy, but if they are planning to build up around his eye socket, won't he need the extra skin? It's also not healed, so I would wait until it's healed to see how it looks. The doctors have done great work so far and Dennis is so brave, handling it all.
As for doctors, I have walked out of offices where they wouldn't listen to me. It takes time, but it is so worth it to find a good doctor. Right now we have an awesome GP for our family who works with us to find solutions for Dorian's issues and he also has an amazing surgeon who is wide open to ideas from parents and willing to collaborate with us on figuring out the oddities that keep popping up. Keep trying!
And making this even longer, that little girl may have been surprised at first, but she should not be bullying Dennis. If she is upset by his appearance she should talk to him and ask some questions, not get other kids to tease him!
I think his eye looks great. You say that you are patching it during the day and letting it air dry at night and I'm wondering if being able to see him with his eye patched would help the kids get a better picture of the real Dennis. The sweet, just like any other boy Dennis. And then latter down the line remove the patch entirely. Giving kids the opportunity to see him as just like anyone else could go a long way to eliminating any further bullying and subsequent damage to his self-esteem. Just a thought and no we should not have to do these kind of things but then to make the best of a bad situation. My dd has had her foot amputated at age 2 so that she could use a prosthesis and honestly I do not want other people to see her stump if they do not need to see it. She is not afraid to let others see it but I do not want her to have to endure the ugly faces or strange looks or comments from other kids .
I'm probably saying the same thing a lot of your other commenters did. Stick to your guns! You're the best advocate for your kids. And if a doctor can't understand or appreciate that then they don't deserve to have you as a patient. I know many doctors that welcome challenges. You're relationship should be a partnership!
Dennis looks great! I can see a lot of improvement. And wow, he sure has grown! Give him a hug for me!
His eye does look better, but I think you are right, it does show more at the bottom and cause a dropping effect. I think that if he had some bone graph on the top and bottom of the far temple area to build that up, the skin would pull up and match the other side of his face nicely and it would not droop so low down. Sort of a similar effect a push up bra has on your gut ;)
Going back and reading this post again I think his eye does look better. I think it might be a bit swollen and that will go down with time.
Also, thinking about the bully thing. I think that needs stopped ASAP! That is going to affect Dennis and a lot of social skills are learned in Kindergarten. The little girl needs to be spoken to about how to treat others that are different. She might be scared, etc but that's not a reason for bullying.
And as far as speaking to a Dr. and then having them dismiss you; I think it's because we Moms of children that have special needs tend to be "Mama Bears" and maybe it comes out wrong. However, in my defense, our son's doctor last week was spoken to by my husband who is a very gentle, laid back soul and he still dismissed us.
Keep searching for Drs. who listen. They are there.
I agree with other posters regarding "scared girl". At this point, she is targeting your son and bullying him. I'd get the administration and transportation involved. This little girl needs to learn that she cannot bully what she does not understand.
Kris
Post a Comment