Thank you for your response

[Guest guest]

Wow and thank you! I am overwelmed and have to say I shed a few tears after

reading all your response messages.

I am sending just one in return as not to take up too much space in

everyone's email in-baskets!

ne: Thanks for sharing your experience about your son Mehkai. His

situation does sound a lot like Hayden's. Hayden also uses his eyebrows and

tilts his chin up to see, which has been going okay. That being said, he

does get rather droopy by the end of a long day so I'm sure the surgery will

be a relief for him. I wish you the best as you plan for the much

anticipated " big day " . I would love to hear how it goes so be sure to let us

know.

Tonikka: It's hard to imagine that you had to send your tiny five week old

into surgery, I feel for you. Reading about it makes me thankful that Hayden

can wait for his. It is great to hear that your other children were exempt

from BPES. Our geneticist reassured us that Hayden's case was considered

sporadic and it is unlikely that the syndrome will reoccur should we have

other children, however it is still good to hear that it is possible. Thanks

again for sharing your story about Lynden.

: Thanks for the name of your doctor. I'd love to hear more about him

especially since Jen MacKinnon, (from New Brunswick) and Evergreen Lee

(Oakville) have also mentioned him. He seems to have done this surgery a

number of times at least. I will be sure to check your photos - best of luck

to you and your son.

Clare: Thank you so much for your very kind words. I envy your position to

understand your daughter; having gone through it yourself. The best advise

and comfort always comes from those who have " been there " . Though we all

know, it's what's inside that counts, it's unfortunate that not all children

are raised to be polite and thoughtful. Like all parents I do want the best

for my son and will do whatever I can to give him normal life and a solid

childhood. I appreciate your taking the time to write back and share your

experience with me. This group is wonderful and hopefully Hayden will also

be able to chat here in the future if he needs to.

Aimee:

Reading your story about Rylee I can say I have been there! I, like you, I

fretted about what I may have done to contribute to Hayden's BPES. I worried

that I may have done something wrong during pregnancy. It wasn't until

speaking to a geneticist and having our blood checked that we found out that

neither my husband nor I have this trait in our DNA. This was a relief and

an end to the worry of: " Did I give this to him? " The geneticist said it was

a sporadic mutation of one of his genes, (I do have the details if you'd

like them), but really nothing could have been done to prevent it that she

knew of. Also, the chances of us having other children with the trait are

unlikely even though Hayden's chance of passing it on to his children is

50%, (we'll cross that bridge when we get there)! Way to go in being so

involved with Rylee's surgeries. It sounds like you are doing the best for

her!

Evergreen:

Thanks for your personal contact information. It is nice to hear from

someone so close to home. I would love to hear more about your experience

with Dr. Pashby. I think I will definately get a second opinion from him if

possible. Was he referred to you or did you go to Toronto because it was the

closest hospital? Please feel free to email me directly at

sherylkampen@... and we'll chat more personally. Thanks again.

Jen: I am planning to look into this Dr. Pashby. Please forward anything you

find out about him - all the details - the good, the bad and the ugly - to

me too! Thanks.

Thanks again to all for sharing your stories and experiences.

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