Smiles

[Guest guest]

Hi ,

Does Ben have a facial palsy (one side doesn't make facial expressions)? If

he has a unilateral palsy, then his smile will only be a half smile and will be

harder to see at first (it just looks like a little twitch at the corner of his

mouth). Sometimes the facial palsy is bilateral, in which case he won't be able

to smile. And sometimes the palsy can change. Evan is 3 1/2 months adjusted (5

1/2 months chronologically), and he's been smiling his cute little half smile

fairly regularly for the past 2-3 weeks. I wouldn't get too anxious about Ben's

smile just yet. I've been reading my " What to expect the first year " book and

was noticing there's a pretty wide range of time for reaching milestones that's

still considered normal. I'm sure with all the excellent care Ben is getting

from his mom and aunt, he's smiling inside and he'll be showing it off in no

time at all.

balletgal1976 wrote:

Hi ,

Thanks for the nice email. Thanks to everyone who took the time to

write.

I appreciate your willingness to help Mike, Amy and Ben (and the

rest of us.) Amy has been very busy with Ben. She is going through

some tough times right now and doesn't really have a routine yet, so

I'm sure that is why she hasn't called you yet. The night nurses

haven't been the best, and with the holidays, they were without one

several nights, which was pretty hard on them. Fortunately, Amy's

Mom has been there since Ben came home from the hospital and has

been a huge help, but I can understand the challenges they have

right now and in the coming years.

The trach is a lot of work and needs suctioned pretty frequently.

With that, and the trach tie changes, the continuous feeds (mixing

his formula,) the medicines, doctors appointments, insurance etc.,

she has her hands full. On Christmas day, Amy cried a little and

said how hard it was.....I think she was just nervous b/c her Mom

was leaving and her husband was heading back to work after the

holidays. Both were very helpful and I don't think she liked the

idea of being alone with Ben because technically, she said it takes

two people to take care of him during the day and do all the things

she needs to do. I recommended that she talk to a counselor but I'm

not sure if she will or not. She had mentioned there was another

CHARGE family in Mason so it's nice to know that you are that family

now.

Ben had to go to Children's today b/c he was spitting up a lot.

They ran lots of tests (poor guy,) but fortunately, I don't think

they saw anything, so hopefully it's just a fluke. He had the

surgery to tie off ? so he wouldn't get the acid reflux. I think

they were afraid that had come undone. I'm happy to report he was

home tonight. I dropped by after work and he was sleeping soundly.

It was a long day for him and he was totally conked out. He's so

cute....and I love watching him sleep....so peaceful.

Ben will be five months old on Jan. 9th (adjusted age three months)

and we are curious when he will start smiling. Can anyone else

provide some insight on this? I'm thinking that he's behind a

little bit, developmentally and that is why he hasn't smiled

yet....but I don't know.

How is your little girl doing? Is she on the mild side of CHARGE?

I may call you at some point to chat...and I'm sure Amy will too,

once things settle down a little bit. She is doing a great job (her

husband too) and we are all so proud of her. They are great parents

and Ben is so fortunate to have such loving, caring parents.

We've been running errands and cooking dinners for them a couple

times a week. Hopefully, the night nurse thing will get better with

the new year.

I hope to meet you soon...and your little angel.

Thanks again!

>

> Hi, Ben's aunt,

>

> I am so glad to hear that Ben is home! Hooray! I just sent him

an e-card at the hospital last night--was thinking of him and his

parents and hoping that he'd be home in time for the holidays. I

know it must be a HUGE adjustment for all of you, but what a relief,

too, to have him finally home.

>

> We actually live less than two miles from Ben's parents, and we

have a little girl who will be 4 in January and has CHARGE. I have

emailed Amy a couple times and gave her my phone number, but haven't

heard from her yet. I figured she was busy, stressed, etc.--

everything that goes along with the territory--and hadn't had a

chance to call yet, or wasn't quite ready to talk. Anyway, if you

guys need anything at all, even if it's just to talk or visit or

need some errands run, ANYTHING--please feel free to call. Our

number is . Although didn't go through some of

the medical complications that Ben has, we do understand what you're

going through and we'd be glad to lend any support and information

that we can. Things do get better--different, yes, but better.

>

> And don't worry about feeling helpless--I think that's a common

feeling for all family members. My sister-in-law still tells me she

feels helpless when she sees us and wants to help out but doesn't

know what she can do. I don't think people realize that just being

there, being supportive, listening, and sharing in the joys and

fears is sometimes enough.

>

> Best to you, Ben, Amy, Ben's dad, and all your family.

>

> Kauffman, mom to (3), Mason, OH

>

>

> ---------------------------------

> Yahoo! Shopping

> Find Great Deals on Holiday Gifts at Yahoo! Shopping

>

>

[Guest guest]

wrote:

" I've been reading my " What to expect the first year " book and was noticing

there's a pretty wide range of time for reaching milestones that's still

considered normal. "

-

I don't know how you are managing to keep up with that book! I lived by it

with my first -- because he did everything early so it was a joy to record

it. But I had to throw it out after Aubrie. There was nothing in there

that applied. Not even the tips on what to do for crying, diaper rash...

anything. There was always something slightly different about the situation

with Aubrie that made the book not apply. Drove me crazy!

On the smiling -- I think Aubrie was 4 months old or so before she smiled

in recognition when Mommy entered the room. I think most of that was her

vision as she has no facial palsy. There are so many reasons for delays in

these things. It can be very hard to wait for those early milestones.

Michele W

Aubrie's mom 8 yrs

[Guest guest]

We really need the smiles and I am enjoying the interesting bits which

are posted ocassionally on this site. We do need them. I just need

to try and trace some conections. Will I get by with living in a

state where all the celebraties with chunks of money decided to buy

homes? Travolta has a home thirty minutes away from me, and it

seems every Tom, Dick and Harry has a home somewhere in Florida so

they are all neighbours, right?

Rita