Monday, November 21, 2011

If Only Love Could Make It All Better

From the very beginning Dennis has shown us just how smart he is.
He is very inquisitive and pays attention to every little detail.
Now that he is getting older, he is asking more and more questions.
He continues to ask as he makes his feelings quite clear.
I have enjoyed seeing Dennis blossom in this way,but lately it has brought me much pain. 
Despite our unconditional love and acceptance that we all show to him every single second of his life, he still sees a little boy that looks different when he looks in the mirror-- which is all the time now.
It began with questions like, "Why do I look like this?"  or "What happened to my eye?"
I try to answer the best that I can, but he moves onto new questions.
"Why does my eye have to be ugly?"
He has told me,
"I don't like my face."
"I want 2 eyes the same."
"Can my other eye see?"
"I don't want to look like this."

It is so hard for me to look back at him and answer because all I see is perfect.
All I feel is perfect love.
Where Dennis sees a flaw, I see absolute beauty.
The way he wraps his arms around my neck.
His gorgeous hair.
The way he smells.
His adorable, chunky feet.
The way he trusts me.
The fat pocket in the wing of his arm. (Shhh, I didn't say that.)
The way he laughs.
His sense of humor.
He zeal for life.
His outgoing personality.
His determination.
His ability to discern a not so nice person.
His happiness over the smallest things.
Today we spent 4 hours at the Cranio-Facial Clinic with an hour and a half lunch.
To say I am disappointed would be a huge understatement.
Yes I am thankful for the antibiotic prescription for his ear and the hydrocortisone cream for his eczema that is currently all over the right side of his face.
But the rest of the visit was one big disappointment.
The doctor's didn't tell me anything new.  In fact I almost feel as if I did Dennis wrong for allowing so many surgeries to happen before his big bone graft that they want to happen in a few years.  It's almost as if they would have preferred that he had no surgery until he was 7 or 8.  But Dennis is not their son.  I bet if he was their son, they would have had the surgeries to improve his appearance.  I have had years to see the huge improvement in Dennis' appearance and all they could tell me was that he still needed alot of work down the road. Dennis was not thrilled to hear that.  He is so done with doctors.  He has made it clear-- "No more surgery!"  Of course I can't let him decide this alone, but I do need to take his feelings into consideration-- especially since I think that he does want a more normal appearance when he looks in the mirror.
I did mention to them that his ears are not even and finding glasses that fit is a challenge.  They said they could do a little something to help,but then crtiticized the scar from a previous skin graft when they looked behind the ear.  They couldn't promise a whole lot on this surgery and would not have even noticed the uneveness unless I mentioned it. 
At this point, I am not sure what to do.
I guess that is good since the team doesn't want to do anything right now anyway (except maybe the cosmetic ear surgery that doesn't sound very promising.)
By the New Year we will be on a new insurance plan.  One of the options is Kaiser Permanente.  I know nothing about Kaiser.  Please share your experiences.  Might they be a better option?

34 comments:

  1. Hi Christine, we have had Kaiser twice and had good luck both times. Our daughter was born unexpectedly 11 weeks premature and we did not pay 1 cent thru Kaiser for her 47 day stay in the NICU. I also had some health scares shortly after her birth and had no problem getting what I needed approved.

    I think the key is finding a great Kaiser doctor who is as concerned about your health concerns. All our daughter's needs (OT, PT, and lots of well-baby visits) were approved and fully covered. She is a thriving 12 yr old now. But I never felt like they were trying to save money by denying services to either of us.

    Just make sure to get pre-approval before hand so they will pay for it.

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  2. Christine,
    It is so tough having a child with facial differences. It is tough for the child who hurts but for the parent who cannot make it better.... I would assume you know of "About Face" but in case you do not, here is the link:
    http://aboutface.ca/ It is Canadian but has resources for supporting people with facial differences through out the life span.

    It seems to me that Dennis has such a significant and unusual constellation of facial differences that it may be worth while doing a fair amount of research around various cranio-facial teams and finding one you are comfortable with in the long term even if it means traveling for his surgeries. I think that the best outcome will come from a single team that can map out a care plan through out his childhood and adolescence. It will need to be tweaked as he grows and changes but I think avoiding changing teams if you move etc will avoid the kind of think ran into today, where one team seems to be critical of the work of the previous one.

    As he gets not too much older it may be helpful for him to meet with other kids who have significant facial differences. There are various camps etc and you may be bale to find one not too far from you. Feeling less alone, even if you can skype with other kids, can help him.

    There is also AbilityOnline http://www.abilityonline.org/public/ability-online
    which is a program designed to connect children with disabilities and chronic illnesses with others with similar issues. I know the woman who developed it and the idea was that especially in smaller towns, or rarer conditions, kids can feel very isolated and alone. This was developed 20 years ago when the internet was new. It is screened and monitored and safe. Again, he is young yet but these are resources worth exploring and noting.

    Good luck,

    Ellen

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  3. Awww; first off, I'm sorry about the disappointing doctor's visit :/.
    And second, Dennis's comments about his appearance are so heart wrenching. I've been reading your blog for so long, since Dennis came into your family, and I always think what an adorable boy he is. I'm sorry you're going through these troubles.

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  4. I have a daughter with some cranial facial differences. Nothing like Dennis - and even though I adopted her, she was adopted from foster care and has had the same cranial facial team since birth! I don't know how it would have been for her to have to change teams just because she was adopted. To me it is quite comforting to know that this team has known her longer than I have and have a plan. I can't imagine what it is like for you and Dennis. I pray you find just the right team.

    My sister was hit by a car when she was three. Her face was stuck to the muffler and burned severely. She always acted like it was no big deal.... BUT actually it was. I think if she would have grieved like Dennis when she was small instead of stuffing her feelings and pretending she didn't care it might have been done her some good. It was a painful thing for her.

    I feel for the little guy! He's a cute kid, but I understand that isn't what he thinks. I pray God will help him with acceptance.

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  5. Christine,

    My heart aches with you. We used a world known cranio-facial/plastics surgeon named Virender Singhal and he is amazing. He travels the world teaching his techniques, he also has books that he has written and he is incredibly picky about his surgeries - they have to be perfect. I'm not sure if he travels for surgeries but seriously, if you want to come here for his opinion, our home is open. I can try and get more info for you if you are interested....

    Praying for your heart and Dennis'. Jonathan always asks about his own eye and teeth. He wants to be "normal" and have both eyes work and look the same. It is heart breaking. You are so right....Dennis is perfect. He is fearfully and wonderfully made.

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  6. I think that a very big part of this is that you need to accept the very harsh reality that Dennis will always have facial diffrences.

    Also. Doctors are never perfect. The doctors that did the prior surgeries may very well have made some mistakes. The scar you mention: when a *doctor* is looking at it, they see it from a medical perspective. It this scar to tight? Too uneven? Was this lift unproperly done?

    This is what they see. And while as a parent you want a doctornto say "this looks great! In a few years you'll never know"! This will never happen.

    You need to accept this. It sounds as if the team you saw is being honest. And you need honesty. Honestly is far more important when it comes to medical issues then platitudes.

    The fact that this team was able to voice their concerns, was able to say "we might not be able to fix this" is not a fault. It is not a slight against dennis.

    Should you see another team? That is your choice. However, you must ask yourself:

    "Am I looking for someone to tell me everything will be fine, or am I willing to accept reality?"

    Reality is that no matter how much is done, dennis will always look a certain way. What he needs, what he really needs...is for YOU to accept him not as what he *could be* but as what he is.

    What he is is a little boy will severe facial deformaties. Is it sad? Yes. But it won't stop him from becoming the man he is meant to be.

    Doctors don't always have answers. Surgeries aren't always done the right way. Children aren't always born perfectly "healthy"

    However as parents...it is our *duty* to accept this. To accept that sometimes things are done wrong. That doctors might tell us that something can't be fixed.

    And that no matter how they look...our children need us to be the one that hold's their hand when they need it held. And even let it go.

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  7. Hi.
    I have 2 children. Neither one of them have any facial "differences" so I cannot relate in that sense. But what I can share is this -

    -My 6 yr old daughter has ALWAYS been referred to as 'cute' 'pretty' 'princess' and constant and I mean CONSTANT praises to her looks by friends, teachers, strangers. (I'm not bragging!! I have a point!!) The past 6 months she has developed QUITE the sassy attitude, and one day when I told her I didn't like her attitude, nor does anyone else, she shocked me with her response - "It doesn't matter, mommy. I'm BEAUTIFUL". - WELL!! We talk every other day if not every day. We tell her that beauty is from kindness and love and using her 'smartness'.

    I asked her if she thought I was pretty. She said yes. I asked her if she would STILL think I was pretty if I had a horrible accident that covered my face with scars and I was 'funny' looking. She got tears in her eyes and said she hoped that didn't happen to me, but she thinks I'd still be pretty because I was a good mom, and nice and kind and smart.

    Now, the whole point of that is merely a suggestion. Maybe use yourself as an example to talk to Dennis? I know without a shadow of a doubt the love and support you ALL have for Dennis. Maybe if it were construed to him from another point of view he may eventually realize he's special. Not different. And that God chose him to look the way he did because God knew he'd have the strength in his heart and from his family to look the way he does.

    I think it's AWESOME that Dennis feels comfortable enough to talk to you about this especially at such a young age. Sad? Yes. Sad that he doesn't 'get it' yet. The road might be long, But I think you guys will raise a very confident young man, regardless if he has no more surgeries or a dozen more.

    (Sorry for the novel!!)
    PS - Dennis - You are AMAZING just the way you are!!!!
    Lana from BC, Canada

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  8. beware of using Kaiser. I am sure there are many who use it and like it, but I live in SW Washington and while I have never had it myself, my husbands family has had it and have nothing but complaints....My friend also has Kaiser and she has to fight tooth and nail to get her autistic son the care he needs.

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  9. Hi! I have been reading your blog regualarly for a while. I was born in Ukraine but live in California now. I love Dennis very much and feel for him. I just want to tell you everything is not so bad as you feel now. This is just a moment feeling. As a mother I have these feelings too. Even though Dennis asks questions, I am sure it is not what is consuming him, I am sure mostly he is a happy boy. I can tell it. Doctors do not know everything, they change their opinions very often. God will take care of Dennis we have to trust Him. I am sure Dennis will grow into wonderful young man. God already gave him perfect family thats why I know He wil not abandon him. I wish all the best for Dennis and as Ukrainian I am very thankful to people as you and your husband. You are amazing! Lesya

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  10. Christine, you are such an awesome person! Yes, heart-wrenching for sure, to have to hear your sweet son grieving his differences. Because he is soooo loved, I believe that he will, over time, be able to accept himself as he is. Hopefully by the time he is grown, you will have found a team of doctors who will be understanding and compassionate, and do everything they can to help him. If possible, don't take these doctors word as the final say.

    I have found (in a different medical situation, with one of our daughters) that after a couple years of the doctors putting us off, and not taking her problem very seriously - that when I finally asked a doctor, 'Do you have children? If this was your child, what would you do?' She thought quietly for a moment, and then referred us to a very great specialist who has been able to give a different, accurate diagnosis, and now she is finally having her issues addressed.

    Good luck!

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  11. Oh Christine, this one broke my heart. I am with you, I see that perfect little boy with a huge personality! I guess it didn't occur to me that he would see himself any differently than we see him. Praying for you today as you continue to do what is the very best for Dennis, just as you always have!

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  12. I would not reccomend KP at all.

    The quality of care is good. However, it is extremely limited. If you heard of a doctor that could help dennis, or if one of your children needed to see a specalist, then you can only see KP doctors. Having the ability to see a doctor of yiur choosing, of being able to go freely to any hospital is honestly the best care.

    Stay away from KP. I had terrible experiences with them as have several others I know. Dennis is too specalized to be chained to only a limited numbe of doctors when he at some point need a specalist.

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  13. I have been reading this blog for a while now but have never commented. Also in the past I have looked back a few years in earlier entries around the time your family brought Dennis home and I know he's had to endure lots of medical intervention. Though I don't know him or your family I feel he is beautiful just as you do. Of course having any kind of noticeable difference doesn't make for an easy life in this world. :-(
    As far as Kaiser Permanente... they are the best insurance I've ever had! But it was the early 90s when I had them... I'm not sure how they are now. Best of luck... I'll keep your family in prayer.

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  14. Well, you can let Dennis know that we all think he's adorable! I suspect he will be more interested in further surgeries when he is a bit older and if you are planning on holding off, it might be a good idea to let him know that he has a few years of respite. I know that explaining things to my son helped immensely and he's nearly 6, but he is ok (not happy, but ok) with going to the hospital if he understands how it will help him.

    In my opinion, doctors should be encouraging and nice. I highly recommend looking elsewhere for someone who will be more pleasant to you and who understands what you want for Dennis. Doctors can get caught up in their own self-importance and we've learned that it really is worth it to keep looking for the right medical personnel to work with your kids. They need to be on the same page as you or it's not going to end well and you'll feel pressured and unhappy and they will be annoyed and Dennis is the one who gets the brunt of it. I really hope you can find an awesome team, it's so worth it to keep looking.

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  15. Christine, You may want to contact the Crainio Facial Foundation in Dallas. They work in connection with Children's Medical City. One of our fellow bloggers just came in to Dallas from Atalanta for surgery there.
    I believe Medical City IS part of Kaiser. The Craineo Facial Foundation, I am not sure.

    With all that said... We have 3 children with physical disabilities that are extensive. We have been through the wringer with heart wrenching appointments. It happens. You have to find the right team.

    But also, Dennis, as young as he is needs to be a part of that team. If he says no surgery, that needs to be honored. This is not a life death situation like he doesn't want his appendix out. This is cosmetic.
    For our kids it all has to do with function. Yet, 2 of our children expressed no more surgery. In honoring that, they both went on to have 1 more to improve function, but it was a choice they made.
    The BEST ADVICE I EVER GOT was from an adult woman who had severe cerebral palsy. She said, if you do ANYTHING for your kids, let them be in control of their own body. She felt VIOLATED each time nobody listened to her, and carried scars much larger than her physical disability because of it.

    You are a great mom! I know you will take everything into consideration, but also, take your time. Too much surgery is just as bad as not enough, and sometimes worse! Because if the wrong person does something, it may not be able to be fixed.

    http://www.thecraniofacialcenter.org/about.html

    Give Dennis a hug from Us! :)

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  16. I don't know anything about that insurance, but I would take into consideration the availabiity of specialist both for Dennis and Alex. I wouldn't want to be told they wouldn't pay for you to go see the very best because that doctor is out of network.

    For the doctor visit, well all docs critique other's work and they are always going to say another's work is not as good, paticularly when it comes to something like reconstructive surgery, or dentistry etc. Personally if I were in your shoes I'd see who the top dog is in the field and go seem him/her, even if it means getting on a plane and traveling. If you decide on one in the Chicago/Milwaukee area my home is open and I'll get you around.

    I think it's healthy that Denis expresses his feelings now about his appearance. He understands he doesn't appear the same to others, however working through this now and accepting it a such a young age is infinitely better than bottling it up.

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  17. I hear you, and I want to congratulate you that you are having the conversations, and Dennis is feeling loved if he's willing to verbalize so much to you. The suggestion from the earlier commenter that he is feeling this way as a reflection of your feelings is strange to me; but maybe I misinterpret what was said.
    I've moved my Caleb's medical care and I wish I had used my gut feelings much earlier than I did. The "old" doctors did not see his potential, did not care about his feelings, and it was almost as though he wasn't in the room. Use your gut - move on if you can. The "premier" center for dealing with his issues is in St Louis, and I am in South Texas. We just can't go that far for so long as he would need, but we did find care that is close enough to drive to, and he is doing great with them. Pray. Ask, seek, knock. I will do the same for you. As another special needs parent, I know what you are saying.
    You're doing great; and your heart isn't hardened or jaded. Good for you.

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  18. I would stay away from Kaiser if you have another option. My Mom, who is an RN says "Kaiser is fine as long as you don't have anything out of the ordinary happen." I think you'd be disappointed with the care that Dennis and Alex would get at Kaiser. My daughter has Kaiser because she is covered through her father. Luckily she is a healthy child so we haven't had any issues but she has had 5 different primary care dr.'s in the last 10 years because her Dr.'s keep moving to other hospitals.

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  19. Kaiser differs in California than the rest of the states. As far as my Kaiser experiences have been for the past 19 years - very good. This past year I've had more problems with them, but they did address my complaints (Chief of the department called me directly).

    When my GI doc could no longer help me, I asked for a referral for a colo-rectal surgeon with no problems. I even flew to the Cleveland Clinic in Ohio and paid just my regular co-pay! (again, CA Kaiser may be different)

    My favorite thing about Kaiser is that I can get an appointment next to my house or a location near work. (as for hospitals I know CA is way different than GA)

    All of my past appointment information is online as well as a place to order prescriptions for pick-up or mail-order.

    I think with Kaiser you do have to be slightly more verbal with the doctors to get certain tests run, etc. When one test wasn't standard and I brought it up, my doctor had no issue giving it to me. When one medication wouldn't be prescribed without trying X amount of other types first, they still found a loophole in their own system to put me on it.

    My biggest complaint has been wait times for getting new specialty appointments. However, the trick is to asking to be put on the wait list!

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  20. But I believe that your love DOES make it better.

    Surely, after a rough day, Dennis feels better when he is enveloped by the love he has when he is at home with his family.

    Dennis, and everyone who loves him, will still have many difficult times, but I have no doubt that the love and support that your entire family has for this precious little boy has given him many joyful times -- perhaps that he might not have had if he were still in the Ukraine.

    I agree with some of the other posts - take your time, get lots of opinions, and let Dennis have some control over what happens. Also, medical options continue to improve - what can't be done today might be possible in a few years. In the meantime, I will pray that others will be kinder to a sweet little boy who happens to look a little different on the outside.

    I am in awe of the wonderful family that you and John have created. I don't think I've done a fraction as well with my one and only as you have done with fifteen - I wish I'd had your blog to learn from when my son was small!

    Thank you for sharing your smiles and trials. They inspire me. YOU inspire me!

    Sending you a hug for "those" times....

    Ann

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  21. 1) DO NOT use Kaiser Permanente. I can't stress this enough. They often haveSup-par care--despite all the glowing reports you .Most important? the fact that the specialists you will need for dennis might not be made avalible.

    2) While what Expat said is what everyone wants in a doctor: sweet, "nice" etc. This is not always the reality. And frankly, it is not what you need. You don't need a doctor that is sweet and kind and '"loveable". You need a doctor that will do their job. A doctor that has knowledge and skill. A doctor that answers your questions, returns yiur calls(even if it is a day later) and knows your childs MEDICAL HISTORY like the back of their hand. Some of the greatest doctors have off-putting personalities. Why? Because they MUST deal with things we cannot ever imagine. Things that may make it difficult to impossible to connect emotionally. I'd rather have a cold indifferent doctor that saves my life, knows what they doing...then a "kind nice" doctor that might mess things up.

    3) You were given some very hard truths. I agree with Geena. From what you wrote it sounds as if these doctors didn't hide anything from you. They were being honest. Staightforward. This is a good thing.

    3) Dennis needs what ever surgeries to make not only his enotional life...but his physical life better. I was severly burnt as an infant. And while I may have screamed "NO!" as a child...while I may have been angry and upset and in pain: I did not know better. The doctors, my parents...they knew what I needed.

    A child dennis's age CANNOT make a decision on his care. He shoupd be comforted. He should be informed-for someone his age--how these surgeries may help.

    M&C talks about a woman feeling violated. That is that womans feelings. She is allowed them. however? She is ALIVE to feel them. Never put your young children in charge of their care. All they know is they want it to STOP they will never know that stopping may kill them...or make their lives less better. In my chuldhood I had over fifty surgeries. 50. Yes I got angry. As a teen I screamed I felt "Violated"(strong word that) but I would not be able to function as I am, I would not have less scars if my parents had given into me. I can never thank my parents enough for doing RIGHT by me.


    4) You are doing right. Dennis needs these future surgeries for so much than many readers can imagine. Emotional and physical comfort. You must remember that doctors don't always have answers. they won't ways give us the answer we want.

    A doctor that tells you they can't or won't do something. A doctor that expresses doubt is someone that I, a veteran of massive surgeries. Would trust far far over a doctor that held my hand and told me "everything is going to be all right" simply to make me feel better---while ignoring the truth, while doing procedures that don't ever need to be done so I think something is being done.

    I had the oppisite reaction to this team from what youbtold me. I thought "clinical personality doctors....but theybare being honest! How wonderful for her. It's about time."

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  22. I have never had Kaiser. But given the specialized nature of Dennis and Alex, i would not want that insurance. They seem to have great care one time and the next person can't get what they need.

    If Dennis were my boy, I think I would go as "high" as I could till I found at least 2 specialists that agreed easily. I wouldn't have a clue if the first Dr was good or not. But I would be uncomfortable with going with one who is unhappy with the previous work without having others who agree with him. Does that make sense? hopefully that is not more than you wanted to know.

    Excema is always caused by a problem inside. When your gut flora breaks down, your digestion suffers. Stuff not easily digested is allowed to pass into your blood stream and becomes poison to your body. As it becomes too great a burden your body tries to rid itself of this stuff. The easiest way is through the skin. And alas, it is irritating. If you study anything about GAPS diet you will find great hope for clearing his skin and strengthening his system. I have found great releief for my children.
    Jessica

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  23. We have Kaiser. Last year we brought home Kori (Corinna from RR)from Ukraine. She weighed 16 lbs at the age of 8. She had a seizure in Kiev and nearly died. When we landed in Oakland we drove straight to Kaiser Hospital. They were amazing with her. She stayed 2 days, and they coordinated all of her future care outpatient so she would not need to be in the hospital (another institutional environment) too long. This year, they paid for her dental work anesthesia and the specialists we saw were all without fail wonderful people. She has 2 Russian doctors for her regular medical care and they love her like she is family. I would highly recommend Kaiser. Things have changed a lot. I love how they have this electronic medical record that all the docs can access. If you have kids, it makes things simple. Everything is mostly in one building. I pay a small copay and everything is covered, even her AFO's that were made by an outside company.

    Anna

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  24. do everything u can to improve your childs health and well being. he/she will thank u later. dennis has more problems than the average child so you are gonna have to advocate for more care. today health care is hard to get for even minor things. push, push, push, he is healthier now, younger and will have less complications with surgery than when older. look in the mirror would u want to know the rest of your life you would look like dennis? again, advocate for your child you will not be sorry. he will thank u later on. maybe it will help maybe it will not be push push. we all deserve a chance to look our best, after all, why did you get him. if you stop now you might as well left him as was when you brought him home. if your house needed a new roof, you would not just patch it with another color and let it be, you would wonder what neighbors and others thought the same here. you must always always do your best in all situations. until at least 2 specialists tell u to go home they cannot possibly do anything else for dennis, push push. this will effect him with glasses as he gets older and needs bifocals, etc. honey this journey has just begun and we are all behind u. a mimi from georgia

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  25. Christine,
    I do not live in California but I do have a little experience through a friend about kaiser. Honestly I would not use that insurance especially with some of your family members needing special care. They might be great if you are well and need nothing. My friend needed a second transplant and she was on Kaiser and they were sending her to some place in their network. They would not let her see the previous team that took care of her and the first transplant. This team was no where as good as the other team and she ended up needing special treatment that was denied by kaiser. She was able to have a family member pay for her to see the first team and they were horrified by how things had gone since leaving their service. Needless to say she died while trying to be approved for another transplant by Kaiser who kept saying they did not feel she needed or at one time deserved it. Since when does an Insurance tell someone that is 18yrs old that they do not deserve another chance to live, espeically since it was their Doctor's who basically screwed up.
    So knowing this I will say by all means PLEASE try to get a different insurance than Kaiser. Your family deserves the best care they can get no matter where it is and Kaiser will NOT offer that.

    As far as Dennis goes. GET SEVERAL MORE OPINIONS! California does not have all the best Doctors in America, therefore you most likely will have to travel in order to do what is best for your son!

    Love,
    Sheil

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  26. Oh dear sweet boy. You are beautiful and wonderful. Never ever forget that!

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  27. I have been following your blog for several years now. I remember when you brought Dennis home and how precious he was as a baby. He has gotten the best love from all of you and none of you see him any different than any other child. However, to the rest of the world his is different but does not mean he does not deserve respect, care, love and most of all the best care he can get.
    It breaks my heart to hear that he wants to be normal. It breaks my heart to hear him say no more surgery, for I know he heard some big important man say it would not be worth it. Unfortunately Dennis has no idea what he really is saying NO to and he has no idea that there very well could be another Doctor out there that could do more surgeries over time and make his appearance look better.
    He does know he is different, and he has said to you that he wants to be more normal.
    You say you have to take his feelings into consideration but at the same time you have to think of what is best for him. All he knows is that surgery means more days feeling bad, pain, and whatever else happens to him with it. He has no idea that it could very well help him, and honestly he should not be apart of the decision making especially at his age. You are the parents you are suppose to make these decisions not him.

    If I were you I would be find another opinion and I think you should do what others have suggested and look at other places than just Cali. As one said there are other very highly specilized Doctors that are not in Cali. Email them, send his records to them, and let them decide if they feel they can help. Do an online search for the best of the best cranio-facial specialist for children. Do not just settle on 2-3 contact everyone you find GOOD info on. This search will take time but it will be so worth it. Of course now John is going to have to realize that you might have to travel across the US to get what is needed for Dennis. I wish I knew someone to recommend to you but I do not know anything about this type of Doctor.

    In the future I would advise you to take someone with you to an appt and let that person sit out in the lobby with Dennis while you talk to the Doctor. Dennis is smart enough to pick up on tension from you and a few of the words that are being said. He is not smart enough or old enough to understand or comprehend the way they are all meant to be said.
    Sorry but most Doctors do not talk in a way that children can understand. Some of them do not always talk in ways intelligent adults can understand much less a little child.

    Take all of the advice you have been given and think about what everyone has said. Some of us say things in harsh ways but are meant to be realistic and caring even if it does not sound like it at first. In a day or 2 re-read those for they might mean more to you.

    Sarah

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  28. Oh Christine! My heart is breaking that he feels this pain! I have been in love with your son from the moment you introduced him to us. He is such a special little man! He is strong and incredibly gifted. he could teach us all a thing or two about difficult situations, I am sure. I will keep him, as well as the rest of your wonderful family, in my prayers as you traverse this difficult stage. Give Dennis big hugs from us, the Harrison's! We love you kiddo!!

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  29. Being different is hard on kids. We go through that with Jasmine. Her missing fingers and toes, cleft repairs and huged scar on the back of her neck and across her skull aren't as noticeable but there is always someone staring or pointing. I tell her God gave her a beautiful singing voice to help compensate for it.

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  30. Christine - I would most def. consult another doctor. With Daniel's medical (not the same) we've been seeing the same doctor for 3 plus years. The last year and half every time we go we hear the same thing - they do a large not fun test, charge us like crazy and then tell us everything looks the same, come back in 6 months, can't do more. Finally I realized we needed a new doctor. Haven't been yet, but I'm looking forward to seeing a more private practice doctor with a new outlook and maybe get some answers. I think seeing a new doctor will make you feel much better in knowing you are doing what you can, something anyone who reads this blog already knows, and having someone new look into things.

    Also, something we do, which you may or may not be doing, is have the doctor do his exam and then send Daniel out of the room with my mom so I can talk to the doctor privately without Daniel hearing everything. It might be helpful to not have Dennis hear the doctor talking about his face. Just a thought!! Thinking of you and praying for your sweet, beautiful Dennis!

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  31. I had another thought overnight - I have a nurse case manager that works in the Seton Healthcare system, and she has made a Huge difference. She is able to schedule meetings with three specialists at once! Having the team of doctors united by the case manager has been the help I needed, and his care is WAY better and more effieicient. Does Kaiser offer that?

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  32. Hugs, Christine. I know your heart aches for Dennis. Mine does, too. People have given you good advice. I won't re-iterate. I guess this is something you all will have to work through, talk about, face up to, be honest with. It's reality. As someone posted before, it's good that he's dealing with it openly and honestly now and not stuffing his feelings. It is a tragedy and it's not fair. Truly. But, God is good, and Dennis has a wonderful family and great parents to help support him throughout his life.

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  33. Praying that all our children (and us!) will see themselves as God made them-Beautiful!
    As for Kaiser, I don't use them, but as a nurse who supports those who tries to coordinate services for seniors who do, I have heard they are very difficult to work with from making appointments, seeing specialists, to getting any kind of communication and collaboration on care as an outside provider.
    God will give you direction on his plan. Even if you had to use KP, God will go before you!
    Have you thought yet about counseling for Dennis? Our Z at 10 still struggles on why God gave him CP and his being as good as or as valuable as a non-disabled person. I know O's trauma counselor sees smaller kids so will see if she thinks she can help him too. Anything to help them grow and become all they can be!

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  34. Hi! I agree with many of your readers do a nation wide search go out of insurance network if you have to find a doctor who will treat your son. He is a real cutie. I am sure some doctor can help him but it may be quite expensive.It seem you have tried every option in your area. You are a good mommie.You may have to pray about it Pat

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I find your comments so inspiring! Thanks for visiting our family blog, and sharing your thoughts.