update

[Guest guest]

Cheryl,

I've gone to start this about six times now!! I just want you know I'm

thinking about you and a lot. All your children are lucky to have a

mom so full of love for her children.

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Cheryl,

You are amazing. The only other bit of info I can think of is food intake.

If you can keep track of his intake at least a few days in advance, it will

likely be requested. I do not track regularly -- actually, I don't seem to

track at all anymore -- too tedious and anxiety producing - but Dr. H will

want a dialog about this. She'd interested in intake and she provides you

ideas for increasing calories. A worthy exchange. Oh yeah, I just

bring a growth curve from the doctors office (height, weight, and head

circ.)

update

Well, yesterday we went in for a CAT Scan to find out why has a

severe hearing disability. 3 hours later we walked out from the

hospital. The whole scan took a whoop-ti-do 5 minutes, but it took

forever for someone to wait on us, then sedate him, then scan, then wait

for him to wake up. What a joke. Anyway, hopefully we'll have results

soon. will have to have a Cochlear Implant done for his hearing

because the device they got him hooked up to now isn't strong enough.

So guess what, another surgery to book. 3/13 he's having his urology

tests done then 3/15 he goes in for surgery on his undescended teste.

3/21 we'll be making a trip ourselves to New York to see Dr. Harbison.

We live in Connecticut so it won't be too far to get there. She's very

anxious to see him. He will be her first triplet she sees with possible

RSS. We're trying to gather all info now to take with us. She's asked

for growth data, lab reports, x-rays, and pictures from birth to now.

Can anyone thing of other things she may want to see? I'll be posting

again when it gets closer to the visit to make sure I don't forget

anything to bring with. Thanks Kathleen for going before me cause I

think you laid the foundation to what's up ahead for us. We actually

may be taking to NY for his Implant surgery. We're researching

drs. now to see who's best suited for the job. I think I've covered

everything. Overall, he's doing well. He's 16lbs. 2 oz to date and

officially walking and climbing stairs. He's a typical two-year old,

just small and can't hear. Drs. are pleased with his progress. We just

keep plugging along.

Cheryl

Mom to Jen, , and - all TWO

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[Guest guest]

Cheryl -

Look at the bright(er) side - March will go by really quick and " SPRING " will

be here before you know it! - Seriously, good luck with everything!

, mom to Jes,

[Guest guest]

Hi Cheryl,

You might want to record his calorie intake for 2 or 3 days. That is all I

can think of.

Ken M

update

Well, yesterday we went in for a CAT Scan to find out why has a

severe hearing disability. 3 hours later we walked out from the

hospital. The whole scan took a whoop-ti-do 5 minutes, but it took

forever for someone to wait on us, then sedate him, then scan, then wait

for him to wake up. What a joke. Anyway, hopefully we'll have results

soon. will have to have a Cochlear Implant done for his hearing

because the device they got him hooked up to now isn't strong enough.

So guess what, another surgery to book. 3/13 he's having his urology

tests done then 3/15 he goes in for surgery on his undescended teste.

3/21 we'll be making a trip ourselves to New York to see Dr. Harbison.

We live in Connecticut so it won't be too far to get there. She's very

anxious to see him. He will be her first triplet she sees with possible

RSS. We're trying to gather all info now to take with us. She's asked

for growth data, lab reports, x-rays, and pictures from birth to now.

Can anyone thing of other things she may want to see? I'll be posting

again when it gets closer to the visit to make sure I don't forget

anything to bring with. Thanks Kathleen for going before me cause I

think you laid the foundation to what's up ahead for us. We actually

may be taking to NY for his Implant surgery. We're researching

drs. now to see who's best suited for the job. I think I've covered

everything. Overall, he's doing well. He's 16lbs. 2 oz to date and

officially walking and climbing stairs. He's a typical two-year old,

just small and can't hear. Drs. are pleased with his progress. We just

keep plugging along.

Cheryl

Mom to Jen, , and - all TWO

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[Guest guest]

Cheryl - What a trying day!!! You must be exhausted. Time for a good

nights sleep! S

[Guest guest]

Cheryl,

I am very happy that 's kidney is fine!! I know the testing is

brutal, especially for children, but it's one less thing to worry about, at

least for awhile. If you don't mind me asking, why do they suspect a

problem? Will they have to do all this testing again in 6 mons? I hope

not- poor guy!

- Mom of (13mons) & (3yrs)

[Guest guest]

Cheryl, I hope you know that I understand. We are going through the same

thing right now.

Jodi

update

>

>

> Well, today I took to the hospital for his urology tests on his

> 1 kidney. What an awful experience that was. First, they had to stick

> a catheter up him and inject fluid to fill his bladder. Then, they

> pulled the catheter out and waited for him to pee. After a while of

> waiting, he still wouldn't pee. So, the doctor starts pouring warm

> water on him. Nope, still not peeing. More warm water. Nope. They

> must have poured 4 cups on my kid and still nothing. So, guess what?

> Back in the catheter went to inject more fluid. Now they're leaving it

> in waiting for him to pee. Nope - more warm water. Do you believe

> this? They had to take pictures while peeing to make sure no fluid was

> backing up into his kidney. 1 hour later after this all started, yeh,

> guess what, PEE! He was so uncomfortable thru this whole process. Now

> I have to get him dressed, then on to the next room for Round 2. Round

> 2 wasn't so bad. They had to inject die inject him to x-rays his

> kidneys. He flipped out during the process, then finally calmed down

> when it was left just for x-rays to be taken. Few! 2 hours later we're

> done with all the tests. Now, on to the drs. office so he can interpret

> the x-rays for me. After a 2 hour wait, they finally called us in. Doc

> says looks OK see you in 6 months. Do you believe this? 4 hours at the

> doctors office. Oh, well, at least it's done for now and his kidney

> seems to be operating fine. Now, getting geared up for next weeks

> visits.

>

> Cheryl

>

>

>

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[Guest guest]

Cheryl,

I'm so glad I asked! I've been a dialysis nurse for 3 years, and

officially specialized in dialysis last year. I never have heard of a

person having four kidneys. Would they all be functional? That's kind of

neat! I do think I had heard of the kidney's and hearing developing at the

same time but I had forgotten until you mentioned it. It sounds like you

are in good hands and it's nice to have a knowledgeable neighbor! If I ever

need info on scoliosis your my women! Anyway thanks for teaching me

something new- I really love my work in fact I miss being full time, and I

miss school too. I'm glad to hear that 's kidney is fine. I'm sure

you both will look forward to annual visits rather than every couple months.

- Mom of (13mons) & (3yrs)

[Guest guest]

,

They found during his renal ultrasound that his kidney was slightly larger than

it should be. Sometimes this happens when you only have 1 - it's a little

bigger to compensate for the one that's missing. So far, that seems to be true

for him. The tests were to confirm this. They wanted to make sure no fluid was

backing up into the kidney causing reflux. You don't want this to happen - it

can create an infection, as well as many other things. So, we need to monitor

the kidney closely. We go back in September to repeat. Hopefully, it will be

like once a year after that. I've learned more about kidney's lately than I

care to discuss. It's actually pretty common for people to have only 1 - you

never know what you got until something comes up. My neighbor transplants

kidneys and says he's seen as many as 4 in one person. Can you believe? Also,

did you know that kidney's and hearing develop at the same time in the womb?

Many children that have hearing issues, aka , also have kidney issues.

Who would have thought? I never knew that. Just call me Dr. Cheryl. We're

covering all parts of the anatomy these days. Tomorrow we can discuss

congenital scoliosis if you like? I'm just kidding, but that's another issue

here.

Cheryl

[Guest guest]

,

Wow, a dialysis nurse. You never know whose listening I guess. With 4 kidneys,

I don't know if they are all functioning or not. My neighbor said if you don't

have the normal 2, you're actually better off with only 1. He said when you get

into the 3's and 4's, your more apt to run into problems with infections, etc.

I think they are just kind of there - not really functioning, but then again I

don't know for sure.

Cheryl

[Guest guest]

Cheryl - how wonderful for you to have such a great Dr. on your " team "

(that's what it seems like sometimes - and Mom's the coach, eh?...) - Anyway,

thank you so much for your e-mail - we are flying in from Mich in 2 weeks to

see Dr. H for the first time, my hubby is a little skeptical(he's not going,

just me, Jes and my sis) - but I am forwarding your e-mail to him. She sounds

like exactly what Jes needs too. We too have a ton of specialists and no one

to " take charge " - I hope our visit turns out to be as productive and

positive as yours!!!! -

, mom to (2 in 2 wks -RSS????), amanda (4 11/12)

[Guest guest]

Cheryl,

I could almost sense the relief in you update. I'm so glad for

you that you got confimation on RSS diagnose and Dr. H seems to be taking

charge.Good luck with you search for a in Wisconsin. Sorry to keep this

short but computer time has been limited and I find myself falling behind. As

always you and will be in my thoughts and prayers.

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

,

Your visit, I'm sure, will not be a waist of time that's for sure. You will

gain

some information out of it, hopefully as much as we did. Your so right how

we're

the Coach's and everyone else is on our team. That's the saying I use as well.

I think I'll make Dr. H Assistant Coach and not just any member of the team.

Have your questions ready, be organized, basically know your stuff that you want

to address. She became real imitimidating to me when she started taking over

's hearing stuff. I said, wait a minute, I know this better than you

(well, not exactly in those words). When she realized how much I knew, I think

I

impressed her. She actually called me a smart Mom. Wow, I was impressed with

that compliment coming from her.

Anyway, good luck with everything. Please keep us posted.

Cheryl

Mom to , , and (RSS, gtube) - 25 mos.

[Guest guest]

Grandma Ann,

I will definately pray that Blair's mom will too be interested. I think if she

gets the right information in a language she can understand, she'll be all set.

Good luck!

Cheryl

[Guest guest]

Hi ,

I know you're very busy with Josh right now, but thank you for your email. I

hope and pray all went well for him today and am anxious like everyone else to

hear results. Regarding BOOST or Kindercal, no we never tried those. Other

than Neocare, Similar, and Pediasure that's about it. Similac has been the main

thing he's been able to tolerate, but then again I haven't tried Pediasure in

almost a year. We're going to give that a go around first and just take it from

there.

Cheryl

Mom to , , & (RSS, gtube) - 25 mos.

wrote:

>

>

> Cheryl,

> I'm so glad that your visit with Dr, H was a successful one! It is

> terrific that she is so connected & can help you with the CI. Have you ever

> tried BOOST or Kindercal with ? Josh preferred the kindercal for

> awhile. This product is made by the Meade company.

> - mom of (3yrs) & (14mons,11lbs5oz,RSS,ASD)

> ville, New York

>

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[Guest guest]

Grandma Ann,

How old is Blair's mom? Is she quite young? I was just thinking if she

were young and alone that having a child with problems is beyond

overwhelming. She is lucky to have you in her life to help out. She might

not understand that from where she is at this time in her life. I know I

would never have made it through Matt's first couple of years without my mom

especially.

I hope she will get interested. I am sure she is just overwhelmed and maybe

in denial. I still wish I will wake up and he will be " normal " .

Judy

Re: update

>

>

> Grandma Ann,

>

> I will definately pray that Blair's mom will too be interested. I think

if she

> gets the right information in a language she can understand, she'll be all

set.

> Good luck!

>

> Cheryl

>

>

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>

>

>

[Guest guest]

Jodi,

The hospital is working out details. Hopefully I hear something Monday or

Tuesday next week. They want to line up the surgeon and the audiologist on

the same day. Can you believe they actually want to take care of 2 things at

once while he's sedated? The surgeon will do his piece first in draining the

fluid and placing the tubes. Then the audiologist will come in and repeat the

ABR screening (sometimes called the BEAR, or brain-stem test). I can't tell

you how happy I am when I find doctors that care so much about the CHILD. I

don't always know when I got a bad doctor, but I'll tell you, when I find a

good one, I know it immediately. I'm so psyched!!! He still may very well be

a candidate for CI, but it's nice to go thru the little things first and build

our way up to the big one if need be. Oh, I forgot to mention one thing in my

earlier post. Before our visit today, I called the surgeon's office 2 weeks

ago to talk to the audiologist and give him a " heads up " on . I do

that now so I don't waste as much time in their offices going thru his

history. Anyway, I told the audiologist that he's got RSS. He never heard of

it (like everybody, of course), but wanted more info on it. So, I directed

him to the Magic foundation site. Well, when I showed up today, can you

believe this guy actually went out there and looked it up! I was impressed he

did his homework. That showed me so much that these people care about my

little guy.

Cheryl

z4all wrote:

> Oh my gosh, Cheryl, what great news!! Aren't you glad you went for the

> second opinion!!! Putting in tubes is so much better than major surgery.

> It just amazes me that mistakes are made like that today. Even Max was a

> " victim " of an x-ray mistake - it had to do with his malrotation - a

> potentions LIFE-THREATENING condition! I am so glad you listened to that

> Mommy instinct and went ahead. When is the ear tube surgery planned?

>

> Jodi

> update

>

> > Well, I thought I'd share an interesting story with the group today

> > (unrelated to RSS, but still worth the reading). As you know,

> > has been diagnosed with a severe hearing loss. We don't know why cause

> > he was born with hearing and somehow lost it. He's basically classified

> > as deaf. We met with an ENT surgeon today to discuss Cochlear Implants

> > (CI) for him. Well, the surgeon took one look at his cat scan x-rays

> > that were done recently and said he's got significant build up of fluid

> > in his ears. He asked me if has had lots of ear infections? I

> > said, actually, he's had his only 2 in the last 6 weeks. Well, needless

> > to say, our discussion change from CI's to putting tubes in 's

> > ears. As most of you know, fluid decreases hearing. The surgeon said

> > by draining the fluid and placing tubes, he will not regain all of his

> > hearing that's been lost, but possible may regain 20% or more. Wow!

> > So, we're scheduling surgery for tubes and redoing some hearing tests.

> > Apparantly, the critical hearing test that was performed to determine

> > his significant loss was about the same time the cat scan was taken.

> > Needless to say, the test can't be accurate due to this fluid. I've got

> > to be the first Mom that's actually happy to hear my son needs tubes.

> > This is relatively small considering CI surgery that may still be on the

> > plate. When they place the tubes, they'll repeat the necessary hearing

> > tests while he's still sedated. I don't want to get my hopes up, but

> > maybe he can get by with a hearing aid system without major surgery.

> > Wouldn't that be great? I'm writing this post not just to update

> > everyone on , but to make you aware that when surgery is on the

> > plate, it's worth getting a second opinion first. Our normal ENT doctor

> > saw these same cat scan x-rays and didn't say a damn thing about fluid.

> > He just said his cochlea (a part of the ear) is formed naturally which

> > means he would be a good candidate for CI. Somehow he forgot to mention

> > anything about

> > FLUID!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Take

> > it for what it's worth, but this is the second time I've had to get a

> > second opinion on . Both times the second opinion was worth the

> > time and money.

> >

> >

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> >

> >

>

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[Guest guest]

Cheryl,

That is wonderful news!! My thought & prayers are with you all. It

would be great if this helped to regain some of his hearing. I can

feel your excitement all the way over here!

- mom of (3yrs) & (14mons,11lbs5oz,RSS,ASD)

ville, New York

[Guest guest]

i like your name you chose. mine has been running around 140 but the last

ultrasound was 126. i am hoping that is accurate as far as the sex.

good luck.

julie

update

Hi I thought since things are a little slow around here I would post an

update.

I had my 28 week DR aptt. today.

I have gained 8 pounds total. She said baby is doing great , my blood

pressure is right on and she is over all happy.

It's heart beat has been in the low 140's and today it was 136. May daughter

was always in the 160's 150's.....wonder if I am having a boy?!

What do you all think of Tyler ???

Crystal

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[Guest guest]

Hi Crystal,

My OB says you can't tell the baby's sex from the heart rate, but of course

some people swear you can. I like the name you have picked. My son is

named .

Lynn

[Guest guest]

the ob i saw said that it isnt 100% accurate but pretty good indicator. i

hope it is accurate. i would love to have a little boy. i keep dreaming

about him. he was supposed to be small and premature according to the docs

but i keep dreaming that he is a 12 lb and late....god, i hope not!!!!

julie

Re: update

Hi Crystal,

My OB says you can't tell the baby's sex from the heart rate, but of course

some people swear you can. I like the name you have picked. My son is

named .

Lynn

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[Guest guest]

well, its only about 10 weeks if not sooner to find out. where has this

time gone?

julie

Re: update

Let me know if you find out....I am just curious to see if the heartbeat is

right.

> i dont know for sure. he....i will call it he till i know better...is too

> shy to let us peek but i get another chance next week. the ob i saw said

> slower is a boy and i have dreamt it is a boy from about a month on. we

> will see.

> julie

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Psalm 127:3

[Guest guest]

Do you know the sex of your baby?

> i like your name you chose. mine has been running around 140 but the last

> ultrasound was 126. i am hoping that is accurate as far as the sex.

> good luck.

> julie

[Guest guest]

no lie. this is starting to hit big time. on one of my other lists they

are starting to talk about packing. i am starting to think that may not be

such a bad idea either. i hope it doesnt drag too slow. i am ready to see

my little one....its been an awful long wait.

hes my little miracle.

julie

Re: update

I know I only have 12 weeks left it has gone bye very very fast....but we

had better watch it the next few could drag!!!!

> well, its only about 10 weeks if not sooner to find out. where has this

> time gone?

> julie

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[Guest guest]

Let me know if you find out....I am just curious to see if the heartbeat is

right.

> i dont know for sure. he....i will call it he till i know better...is too

> shy to let us peek but i get another chance next week. the ob i saw said

> slower is a boy and i have dreamt it is a boy from about a month on. we

> will see.

> julie