REFLUX

[Guest guest]

I feel guilty about everything. The fact that I can

eat and he can't, that i get upset at the situation

instead of handling it better. I don't get mad at

him, just the situation. I think my wife gets

irritated with me sometimes.

--- Michele Westmaas wrote:

> Ken-

> First of all, it's ok to feel angry and frustrated.

> We have all been

> there. Since is only 1 yr old, you haven't

> even begun to " get over

> it " yet. You never really get over it, but things

> do get better.

> You'll feel less negative feelings and more positive

> ones as time goes

> on. It takes a long time to get used to your new

> life with CHARGE.

> Hang in there and don't allow yourself to feel

> guilty for your negative

> feelings. Share them with us if it helps.

>

> Second, about the reflux, You mentioned Zantac and

> Reglan. We tried

> Zantac, Propulsid (which is now off the market), and

> Prilosec with

> Aubrie. Prilosec made a huge difference for her.

> The other 2 didn't

> help much. If you haven't tried Prilosec, perhaps

> it will also help

> .

>

> As mentioned, some kids outgrow reflux by age 2

> or so. Aubrie is

> one of those. We managed (tried to reduce) her

> reflux with medication,

> positioning, etc. It wasn't always easy, but we

> thought we'd buy some

> time to see if she'd outgrow it before we did the

> fundoplication. She

> did outgrow it and had her tube removed before age

> 2. I think she's a

> miracle story in some ways, but if it can happen for

> her, it can happen

> for others. At her worst, she was vomiting as many

> as 20 times a day.

> Maybe more -- it seemed constant but I remember

> recording that number

> somewhere along the way. The fact that can do

> fine for a few days

> seems encouraging.

>

> Another thing we tried was Nutramigen formula. It

> was very helpful to

> Aubrie. Although that was when she was under age 1

> and an infant

> formula was appropriate nutritionally. There seem

> to be less non-dairy

> and non-allergenic formulas to use in place of

> Pediasure. The only one

> I've heard of is the one mentioned that Kennedy

> is on. Another

> suggestion we've had is goat's milk but I'm not sure

> of the caloric

> content or the full nutritional value.

>

> Another thing we used that gave me peace of mind at

> night was a Danny

> Sling. It's like a velcro harness that attached to

> the crib. The child

> is velcroed in around the diaper area. It allows

> movement but doesn't

> allow the child to turn upside down, roll over, and

> scoot all around.

> That was very important to us in keeping Aubrie

> upright in her bed which

> had the head elevated to assist her reflux during

> overnight feedings.

> It also eliminated the worry of getting wrapped up

> in her tubing. On

> the downside, she wasn't able to roll over which

> probably limited her

> development but she hated being on her stomach

> anyway so I don't think

> she would have.

>

> Perhaps none of these ideas will help, but at least

> know that you are

> not alone in your frustration.

>

> Michele W

> mom to Aubrie (3 yrs) CHaRgE and (9 yrs)

> IL

>

>

__________________________________________________

[Guest guest]

I'm sorry Ken, I've been following this, but I don't remember if you

mentioned what 's feeding secedule is? What's it like? How much, when

that sort of thing?

I'm not sure if I can help (I'm also new to the CHARGE thing), but maybe...

Take care, Eve

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Ken wrote:

> I feel guilty about everything. The fact that I can

> eat and he can't, that i get upset at the situation

> instead of handling it better. I don't get mad at

> him, just the situation. I think my wife gets

> irritated with me sometimes.

Ken,

I know what you mean. One of the most important things I learned in the early

months with Aubrie was the importance of my husband and I allowing each other

freedom to handle this strange situation in our own unique ways. We still

handle it very differently. I had to remind myself that he cared and worried

as much as I did even though he didn't cry, didn't read everything he could

get his hands on, etc. We did a good job of accepting each other's difference

through it all. I think that's part of what helped us get through it.

I think it's wonderful that you are able to talk about how this is effecting

you. My husband is not much of a talker. Since I talk everything out, I

can't imagine how he can cope without sharing more. But, he does, so whatever

:-)

I felt terribly guilty in the beginning. I was so frustrated and angry -- as

you said, with the situation. But I knew my feelings were interfering with my

relationship with Aubrie. I love her more than anything, but it was

frustrating to have to so many medical things with her and not just love her

and care for her as usual. It wasn't fair for the joy of her birth to be

clouded by the tragedy of CHARGE. It wasn't fair that I couldn't nurse her.

I couldn't hold her during her feedings because she had to sit quietly and not

throw up. I was so exhausted from her medical care and all the emotional

stuff that I couldn't be there for her the way I wanted to be. But you know

what? That all improved. I have to reach far in my memory to bring those

feelings back up.

If you can find a way to get through each day, learn to take it one day at a

time (yeah, I know -- easier said than done), you too will make it to the

light at the end of the tunnel. Just have faith that it will get better even

though you can't imagine how. In the beginning, I pleaded with this group to

tell me how and if my life would ever be " ok " again. They all assured me that

it would. I didn't understand how they could be so sure. But they were

right. So hang in there and relax while your brain figures out how to handle

all these new issues that have been brought into your life.

Michele W

[Guest guest]

One more thing that I forgot Ken. I took Lexi off of

all her reflux meds and switched to Carnation Good

Start about the time she quit throwing up. I don't

know if it was the meds, the formula, or her sitting

up but I thought I'd let you know.

__________________________________________________

[Guest guest]

Ken,

THat's exactly what we have a "Nissen fundoplication", there is also a "thal fundoplication"(partial wrap) It is hard to put them through so many surgeries, we are off for number 10 on the 23rd of April. I'm finding it easier now that they let me take her into the OR until she falls asleep, but it's still not easy that's for sure.

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

reflux> > > > > > is a year old now, and was on Enfamil 24> > calorie> > formula. Still G-tube fed, He goes through> spells> > of> > constant reflux, then won't spit up at all for> a> > few> > days, then reflux again. His nutritionist> > switched> > him to Pediasure and he isn't handling it very> > well,> > but didn't have great luck with Enfamil> either. > > Yes,> > we give him Zantac, and Reglan. We have to> > suction> > him constantly. He has already had a soft> palate> > repair. Does anyone have any ideas or stories> or> > anything that I might be able to use? Poor> little> > guy, I feel guilty everytime I eat. How many> > other> > people get mad at God sometimes? I know I> > shouldn't> > but I am only human, and I get reminded of> that> > daily.> > > > Ken> > > > > __________________________________________________> >

[Guest guest]

Ken,

It's only human to have such emotions, and it takes different people different lengths of times to deal with things. I totally understand what you are going through, it just is NOT fair all the stuff these kids have to go through. I remember going to a parent's workshop early in Kennedy's life and it was for a kids that are Deaf/Hard of Hearing Parents group. I just about cried part way through the day, "I wish my kids were JUST deaf!!!!". I couldn't handle it that early on, hearing about other parents being so upset that their children had to wear hearing aides, etc. I remember thinking okay if Kennedy were JUST DEAF or JUST BLIND, or Just ONE thing, it'd be okay, but heck this CHARGE thing is HEAD TO TOE! Looking back I know that if Kennedy were "just deaf" or just one thing, it'd be just as traumatic as CHARGE but early on it was so hard to see that.

Sorry to write a book, but I know what you're going through and I think it's totally normal!

Try not to feel too guilty, he will improve with age in a lot of areas I'm sure of it. Kennedy has changed so DRASTICALLY since those early days (even since the age of 1-1/2). I never thought she'd be doing this well at 3, she blows us away lately with how fast she's developing.

Hope this helps,

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: Re: reflux

I feel guilty about everything. The fact that I caneat and he can't, that i get upset at the situationinstead of handling it better. I don't get mad athim, just the situation. I think my wife getsirritated with me sometimes. --- Michele Westmaas wrote:> Ken-> First of all, it's ok to feel angry and frustrated. > We have all been> there. Since is only 1 yr old, you haven't> even begun to "get over> it" yet. You never really get over it, but things> do get better.> You'll feel less negative feelings and more positive> ones as time goes> on. It takes a long time to get used to your new> life with CHARGE.> Hang in there and don't allow yourself to feel> guilty for your negative> feelings. Share them with us if it helps.> > Second, about the reflux, You mentioned Zantac and> Reglan. We tried> Zantac, Propulsid (which is now off the market), and> Prilosec with> Aubrie. Prilosec made a huge difference for her. > The other 2 didn't> help much. If you haven't tried Prilosec, perhaps> it will also help> .> > As mentioned, some kids outgrow reflux by age 2> or so. Aubrie is> one of those. We managed (tried to reduce) her> reflux with medication,> positioning, etc. It wasn't always easy, but we> thought we'd buy some> time to see if she'd outgrow it before we did the> fundoplication. She> did outgrow it and had her tube removed before age> 2. I think she's a> miracle story in some ways, but if it can happen for> her, it can happen> for others. At her worst, she was vomiting as many> as 20 times a day.> Maybe more -- it seemed constant but I remember> recording that number> somewhere along the way. The fact that can do> fine for a few days> seems encouraging.> > Another thing we tried was Nutramigen formula. It> was very helpful to> Aubrie. Although that was when she was under age 1> and an infant> formula was appropriate nutritionally. There seem> to be less non-dairy> and non-allergenic formulas to use in place of> Pediasure. The only one> I've heard of is the one mentioned that Kennedy> is on. Another> suggestion we've had is goat's milk but I'm not sure> of the caloric> content or the full nutritional value.> > Another thing we used that gave me peace of mind at> night was a Danny> Sling. It's like a velcro harness that attached to> the crib. The child> is velcroed in around the diaper area. It allows> movement but doesn't> allow the child to turn upside down, roll over, and> scoot all around.> That was very important to us in keeping Aubrie> upright in her bed which> had the head elevated to assist her reflux during> overnight feedings.> It also eliminated the worry of getting wrapped up> in her tubing. On> the downside, she wasn't able to roll over which> probably limited her> development but she hated being on her stomach> anyway so I don't think> she would have.> > Perhaps none of these ideas will help, but at least> know that you are> not alone in your frustration.> > Michele W> mom to Aubrie (3 yrs) CHaRgE and (9 yrs)> IL> > __________________________________________________

[Guest guest]

The last major surgery had was his heart back in

August. Then a partial cleft in January. Don't you

wish you could do it for them?

--- Graeme & Weir wrote:

> Ken,

> THat's exactly what we have a " Nissen

> fundoplication " , there is also a " thal

> fundoplication " (partial wrap) It is hard to put

> them through so many surgeries, we are off for

> number 10 on the 23rd of April. I'm finding it

> easier now that they let me take her into the OR

> until she falls asleep, but it's still not easy

> that's for sure.

>

> Mom to Kennedy 3yr old CHARGEr, 11, 9, and

> wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

> http://www.geocities.com/SunsetStrip/Palms/5716

> ICQ #1426476

> reflux

> > >

> > >

> > > is a year old now, and was on Enfamil

> 24

> > > calorie

> > > formula. Still G-tube fed, He goes

> through

> > spells

> > > of

> > > constant reflux, then won't spit up at all

> for

> > a

> > > few

> > > days, then reflux again. His nutritionist

> > > switched

> > > him to Pediasure and he isn't handling it

> very

> > > well,

> > > but didn't have great luck with Enfamil

> > either.

> > > Yes,

> > > we give him Zantac, and Reglan. We have

> to

> > > suction

> > > him constantly. He has already had a soft

> > palate

> > > repair. Does anyone have any ideas or

> stories

> > or

> > > anything that I might be able to use?

> Poor

> > little

> > > guy, I feel guilty everytime I eat. How

> many

> > > other

> > > people get mad at God sometimes? I know I

> > > shouldn't

> > > but I am only human, and I get reminded of

> > that

> > > daily.

> > >

> > > Ken

> > >

> > >

> >

> __________________________________________________

> > >

[Guest guest]

You said it all. That is exactly how I feel. Thanks.

It isn't bad hearing " it gets better " from someone

who knows, not people who just don't know what else to

say. We have the CHARGE manual and I don't read it

much, I am always tired after work(from weird hours)

try to give my 4 year old some time also. My wife is

handling things better than me, I am normally the

strong one when it comes to money, car trouble, etc.

But not this.

ken

--- Michele Westmaas wrote:

>

>

> Ken wrote:

>

> > I feel guilty about everything. The fact that I

> can

> > eat and he can't, that i get upset at the

> situation

> > instead of handling it better. I don't get mad at

> > him, just the situation. I think my wife gets

> > irritated with me sometimes.

>

> Ken,

> I know what you mean. One of the most important

> things I learned in the early

> months with Aubrie was the importance of my husband

> and I allowing each other

> freedom to handle this strange situation in our own

> unique ways. We still

> handle it very differently. I had to remind myself

> that he cared and worried

> as much as I did even though he didn't cry, didn't

> read everything he could

> get his hands on, etc. We did a good job of

> accepting each other's difference

> through it all. I think that's part of what helped

> us get through it.

>

> I think it's wonderful that you are able to talk

> about how this is effecting

> you. My husband is not much of a talker. Since I

> talk everything out, I

> can't imagine how he can cope without sharing more.

> But, he does, so whatever

> :-)

>

> I felt terribly guilty in the beginning. I was so

> frustrated and angry -- as

> you said, with the situation. But I knew my

> feelings were interfering with my

> relationship with Aubrie. I love her more than

> anything, but it was

> frustrating to have to so many medical things with

> her and not just love her

> and care for her as usual. It wasn't fair for the

> joy of her birth to be

> clouded by the tragedy of CHARGE. It wasn't fair

> that I couldn't nurse her.

> I couldn't hold her during her feedings because she

> had to sit quietly and not

> throw up. I was so exhausted from her medical care

> and all the emotional

> stuff that I couldn't be there for her the way I

> wanted to be. But you know

> what? That all improved. I have to reach far in my

> memory to bring those

> feelings back up.

>

> If you can find a way to get through each day, learn

> to take it one day at a

> time (yeah, I know -- easier said than done), you

> too will make it to the

> light at the end of the tunnel. Just have faith

> that it will get better even

> though you can't imagine how. In the beginning, I

> pleaded with this group to

> tell me how and if my life would ever be " ok " again.

> They all assured me that

> it would. I didn't understand how they could be so

> sure. But they were

> right. So hang in there and relax while your brain

> figures out how to handle

> all these new issues that have been brought into

> your life.

>

> Michele W

>

>

>

__________________________________________________

[Guest guest]

They don't know as much as I thought that's for sure.

We are at a Naval hospital to top it off.

--- JDDUNGETHEIM749@... wrote:

> Ken,

> I thought the same thing about not putting Bryce

> through another surgery

> to have the nisssan, but after having one at 15

> months, his day to day life

> improved significantly. I wished I had done it

> sooner. Just my experience. It

> is so hard to know what is best for these kids

> sometimes. Even the doctors

> don't often know.

> Deedee

>

__________________________________________________

[Guest guest]

Thanks for the info.

--- tyleritst@... wrote:

> Ken-

> My grandson had a nissen done at 2 weeks. The

> surgery consist of taking the

> top part of the stomach and wrapping it around the

> end of the esophagus to

> prevent reflux and aspiration. It has prevented

> some of the reflux but not

> all--He is on Zantac twice a day. The trick with

> Josh is to feed slow.

> Needless to say, he hasn't had pneumonia. But we

> have had other problems.

> GI bleed not related to the surgery caused changes

> of formulas until we got

> it right. Just putting on weight is the problem.

> Josh still acts like he

> strangles at times when he's fed too soon.

> Josh is on Nutramangen with polycose for extra

> calories. Josh only weighs 13

> 1/2 lbs. He now has two teeth, is rolling over,

> attempting to sit up. and

> scoots on him back to get around the floor. We are

> so proud of him.

> I would suggest the nissen to anyone!!!

> Iris, mom and grandmom of Chargers--Kriste, age 28

> and her son Josh age 10

> months

>

__________________________________________________

[Guest guest]

So badly, so very badly Ken! Even though we are into "minor" (if there IS such a thing for a CHARGEr) surgeries now, I still hate seeing her on IV's, in pain, etc. I know I should be thanking my lucky stars and I do, because it could be much worse. But, I'm human so I have to complain sometimes too.

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

reflux> > > > > > > > > is a year old now, and was on Enfamil> 24> > > calorie> > > formula. Still G-tube fed, He goes> through> > spells> > > of> > > constant reflux, then won't spit up at all> for> > a> > > few> > > days, then reflux again. His nutritionist> > > switched> > > him to Pediasure and he isn't handling it> very> > > well,> > > but didn't have great luck with Enfamil> > either. > > > Yes,> > > we give him Zantac, and Reglan. We have> to> > > suction> > > him constantly. He has already had a soft> > palate> > > repair. Does anyone have any ideas or> stories> > or> > > anything that I might be able to use? > Poor> > little> > > guy, I feel guilty everytime I eat. How> many> > > other> > > people get mad at God sometimes? I know I> > > shouldn't> > > but I am only human, and I get reminded of> > that> > > daily.> > > > > > Ken> > > > > > > >> __________________________________________________> > >

[Guest guest]

To all you wonderful charge parents:

Todays post really hit home for some reason. It has brought back some real powerful memories. The guilt,the coping day to day never knowing what it may bring, another surgery, etc. I am told everytime we see any specialist just how lucky I am with Kim. Even though she has had major problems she has good sight and wasn't on a feeding tube very long. Only about 2 months. I pray that hopefully she has been through the worse of it all but also realizing that more surgeries lie ahead. Kidney, another choanal atresia repair, PE tubes the rest of her life. After her second kidney surgery in 94' her urologist said there would possibly be a third. I just looked at him and said, "you'll have to hire someone to stay at the hospital as I couldn't do it again." Well, I've done it again, stays in the hospital that is, and will continue to do it when necessary. Friday morning she woke with a very high fever which is unusual for her. We went to the doctor and she has acute bronchitis and the nastiest sinus infection ever. She's been on meds since Friday and just now getting a little better. For those of you with the little ones, it does get better somehow, at least it has for us. Kim, now 15, is doing great, since getting her new hearing aides, and loves going to work at Kmart, Walmart and Target 2-3 days a week. The only problem is she scopes out the store while at work and comes home to tell me what we have to go buy. She's getting real fed up with me constantly asking her what her SSN is, her phone # and address, her birthday, etc. Its seems to be slow coming but she also knows how to cut me off when she doesn't want to do something. She was recently introduced to makeup at school. I knew she wouldn't go for it as she hates anything on her face. I came home from school one day and her face was absolutely beautiful. I asked her twin if she had put makeup on her and she said no that Kim had done it herself. I thought, my babies growing up. She did it so perfect. As soon as I had seen her face she went and immediately washed it all off and has not put it on since. But thats fine as she is beautiful without it. Your little ones will too gain independence. I feel so blessed to have been given such a wonderful gift. She will never be able to realize the impact she has had on not only her family but even a stranger. I am so very proud of her. Thanks for listening, I just had a need to vent. A good vent!

Lydia mom to chrg Kim 15, Alia 15, almost 17, 20 this month. (God I'm getting old!)

Graeme & Weir wrote:

So badly, so very badly Ken! Even though we are into "minor" (if there IS such a thing for a CHARGEr) surgeries now, I still hate seeing her on IV's, in pain, etc. I know I should be thanking my lucky stars and I do, because it could be much worse. But, I'm human so I have to complain sometimes too.

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

reflux> > > > > > > > > is a year old now, and was on Enfamil> 24> > > calorie> > > formula. Still G-tube fed, He goes> through> > spells> > > of> > > constant reflux, then won't spit up at all> for> > a> > > few> > > days, then reflux again. His nutritionist> > > switched> > > him to Pediasure and he isn't handling it> very> > > well,> > > but didn't have great luck with Enfamil> > either. > > > Yes,> > > we give him Zantac, and Reglan. We have> to> > > suction> > > him constantly. He has already had a soft> > palate> > > repair. Does anyone have any ideas or> stories> > or> > > anything that I might be able to use? > Poor> > little> > > guy, I feel guilty everytime I eat. How> many> > > other> > > people get mad at God sometimes? I know I> > > shouldn't> > > but I am only human, and I get reminded of> > that> > > daily.> > > > > > Ken> > > > > > > >> __________________________________________________> > >

[Guest guest]

Ken-

I had a thought as I've been reading your posts. If you haven't already

done so, let your wife know that your recognize and appreciate how well

she's handling things right now. She may be feeling just as lost as you

are. My husband never said that to me and it would have made a huge

difference. I remember times when he seemed upset because I " knew it

all " . I was then frustrated because I didn't want to know it all - -and

I didn't feel like I did. I felt like I had to try because no one else

would. We were making terrifying decisions that we didn't feel equipped

to make. I was going to all the doctor appts, all the therapy, etc and

often felt like my world was in an uproar because I didn't know if the

outcome of any appt would be positive or negative. Would Aubrie perform

well for therapy, get good news from the doc, or would she fuss, cry,

etc, would we find out some new complication? DJ didn't have to deal

with all that. He just had to go to work every day. His daily life

didn't change much. Mine fell apart. If he'd expressed some

appreciation and recognition of what I was doing, it would have been a

huge help. I am understanding now because I know he was doing his best

at the time and I feel like he did appreciate me even if he couldn't say

so. This may all be inapplicable to your situation, but I thought I'd

offer it just in case. I'm guessing that your wife will be

understanding of your feelings right now if you will just share them

with her. I would have loved for DJ to share his feelings of inadequacy

and frustration.

Michele W

Aubrie's mom -3 yrs

[Guest guest]

Dear Michele,

Reading your post is ditto of my earlier life. However, I couldn't hold my marriage together. Not that Kim's problems broke it up, I simply couldn't handle my x's issues along with a 4 yr old plus 3 in diapers, one of which was sick. Didn't even find out Kim had charge until after the divorce. I've wished many times I had had someone just to lean on. Always keep that communication line open. Sounds like your a lady of great wisdom.

Now, something you have to look forward to later down the road. Kim started her first period Aug of 99', the weekend before school started. It was horrible as she refused to wear pads. Need I say more. Well, that was the last one until this morning. Guess who started their second period. Oh lucky me! She once again is refusing to wear pads. The only thing I know to do is threaten to take away her videos. I call this my bribery skills. lol Take care! Lydia

mom to Kim 15, Alia 15, 16, 19

Michele Westmaas wrote:

Ken-I had a thought as I've been reading your posts. If you haven't alreadydone so, let your wife know that your recognize and appreciate how wellshe's handling things right now. She may be feeling just as lost as youare. My husband never said that to me and it would have made a hugedifference. I remember times when he seemed upset because I "knew itall". I was then frustrated because I didn't want to know it all - -andI didn't feel like I did. I felt like I had to try because no one elsewould. We were making terrifying decisions that we didn't feel equippedto make. I was going to all the doctor appts, all the therapy, etc andoften felt like my world was in an uproar because I didn't know if theoutcome of any appt would be positive or negative. Would Aubrie performwell for therapy, get good news from the doc, or would she fuss, cry,etc, would we find out some new complication? DJ didn't have to dealwith all that. He just had to go to work every day. His daily lifedidn't change much. Mine fell apart. If he'd expressed someappreciation and recognition of what I was doing, it would have been ahuge help. I am understanding now because I know he was doing his bestat the time and I feel like he did appreciate me even if he couldn't sayso. This may all be inapplicable to your situation, but I thought I'doffer it just in case. I'm guessing that your wife will beunderstanding of your feelings right now if you will just share themwith her. I would have loved for DJ to share his feelings of inadequacyand frustration.Michele WAubrie's mom -3 yrs"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Yea Ally!!! Glad to hear you are growing and feeling better--keep eating that baby food!!

, mom to Timmy 5.5 ChARGE, keegan 3 and liam almost 6 mo, wife to pat

[Guest guest]

,

I saw your email to Ken and I must say I understand

COMPLETELY! My husband, Walter, does not help with

anything that has to do with Lexi. No dr. appts, no

therapy appts, no feedings, nothing. I am so

overwhelmed and have no one to talk to or confide in.

I have told him this but of course things don't

change. I am totally at my wits end and I am afraid

this has really impacted our marriage for the worse. I

usually don't talk about this, in fact I never do, but

it is really getting to me and I don't know what else

to do. We have such a communication problem it is

ridiculous but I haven't found a way to rectify it

yet. Any suggestions would be great. And sorry for

being such a downer but boy do we need help!

__________________________________________________

[Guest guest]

Try getting him involved a little at a time.

--- Gerholt wrote:

> ,

> I saw your email to Ken and I must say I understand

> COMPLETELY! My husband, Walter, does not help with

> anything that has to do with Lexi. No dr. appts, no

> therapy appts, no feedings, nothing. I am so

> overwhelmed and have no one to talk to or confide

> in.

> I have told him this but of course things don't

> change. I am totally at my wits end and I am afraid

> this has really impacted our marriage for the worse.

> I

> usually don't talk about this, in fact I never do,

> but

> it is really getting to me and I don't know what

> else

> to do. We have such a communication problem it is

> ridiculous but I haven't found a way to rectify it

> yet. Any suggestions would be great. And sorry for

> being such a downer but boy do we need help!

>

>

> __________________________________________________

>

[Guest guest]

Believe me, she knows. I make a comment everyday to

her about something or another. She also knows how I

feel. I guess I just wanted to talk to others as

well. Thanks for your input. I guess I reassure her

to do exactly what you said, to make her feel better.

I have a great marriage and I am happy about that!

Thanks again.

Ken

--- Michele Westmaas wrote:

> Ken-

> I had a thought as I've been reading your posts. If

> you haven't already

> done so, let your wife know that your recognize and

> appreciate how well

> she's handling things right now. She may be feeling

> just as lost as you

> are. My husband never said that to me and it would

> have made a huge

> difference. I remember times when he seemed upset

> because I " knew it

> all " . I was then frustrated because I didn't want

> to know it all - -and

> I didn't feel like I did. I felt like I had to try

> because no one else

> would. We were making terrifying decisions that we

> didn't feel equipped

> to make. I was going to all the doctor appts, all

> the therapy, etc and

> often felt like my world was in an uproar because I

> didn't know if the

> outcome of any appt would be positive or negative.

> Would Aubrie perform

> well for therapy, get good news from the doc, or

> would she fuss, cry,

> etc, would we find out some new complication? DJ

> didn't have to deal

> with all that. He just had to go to work every day.

> His daily life

> didn't change much. Mine fell apart. If he'd

> expressed some

> appreciation and recognition of what I was doing, it

> would have been a

> huge help. I am understanding now because I know he

> was doing his best

> at the time and I feel like he did appreciate me

> even if he couldn't say

> so. This may all be inapplicable to your situation,

> but I thought I'd

> offer it just in case. I'm guessing that your wife

> will be

> understanding of your feelings right now if you will

> just share them

> with her. I would have loved for DJ to share his

> feelings of inadequacy

> and frustration.

>

> Michele W

> Aubrie's mom -3 yrs

>

>

>

>

__________________________________________________

[Guest guest]

, my husband and I are not perfect by any means and DO have problems,

who doesn't? But before we had kids we had major issues and went to a

therapist, not for long, but long enough to realize the major point she was

making was, communication is the key to a successful marriage. I hate that

phrase, because I tend to hold things in until I burst, but it's true. I'm

not saying go to a therapist, I'm not trying to tell you how to live your

life, I'm not in your house, but you have to either get help from someone

else or him. Tell him what you have to do for your child, at home,

therapies, etc. and that you need help. Even if it's only that he listens

to you and helps make decisions. She is HIS child too, and he needs to

accept responsibility for her care. Like Ken said, go slow, but let him

know EVERYTHING. A typical child puts strain in a marriage sometimes, but

our special ones can really cause the thread to pull, in several different

directions. I hope this isn't too long winded and it helps--if you need to

vent, I'm here.

, mom to timmy5.5 ChARGE, keegan 3, Liam almost 6 mos., wife to

pat --the communication reminder

Re: re: reflux

> ,

> I saw your email to Ken and I must say I understand

> COMPLETELY! My husband, Walter, does not help with

> anything that has to do with Lexi. No dr. appts, no

> therapy appts, no feedings, nothing. I am so

> overwhelmed and have no one to talk to or confide in.

> I have told him this but of course things don't

> change. I am totally at my wits end and I am afraid

> this has really impacted our marriage for the worse. I

> usually don't talk about this, in fact I never do, but

> it is really getting to me and I don't know what else

> to do. We have such a communication problem it is

> ridiculous but I haven't found a way to rectify it

> yet. Any suggestions would be great. And sorry for

> being such a downer but boy do we need help!

>

>

> __________________________________________________

>

[Guest guest]

BEEN THERE--DONE THAT!!!!! NEXT!!!!

IRIS, MOM AND NANA TO CHARGERS!!!!!!!!!!

[Guest guest]

Talking about the reflux and Nissens brings back lots of memories here!

Those were the very, very, VERY early days!

They had tried to feed with a tube through the mouth, but everything

they put in came back up. And they really couldn't position a 4# 10oz.

infant in a reclining position very well! had pretty bad reflux and

the doc just said, " really needs to have this procedure called a

Nissen fundoplication, and we'll place a g-tube during the same surgery.

Any questions? " Cut and dry, statement followed by a brief explanation of

what it was and why.

In many ways, Rick and I were fortunate: had a Nissen and g-tube

placed when she was 5 days old. She had no (and I mean ZILCH) suck/swallow

and they didn't want to go with the ng-tube long term and make her adverse

to feedings, as well as the fact of the choanal atresia repair. The ENT

said that even when was " fully opened " her nasal passages were so

small, anything could cause big time trouble, so no ng-tube. I'm actually

thankful that was not an option for us. We also weren't given a lot of

other options, like a " thal " or anything else. The docs just said they all

agreed that the Nissen fundoplication and g-tube placement was going to be

the best for .

At that stage of the game (5 days old, remember), we were still half in

shock from the emergency c-section 7 weeks early; having transfer to

the children's hospital at 1 day old; having the atresia surgery at 3 days

old; having a 3-year old who is totally freaking with Grandma and wanting

Mommy; getting me released to, literally (as my OB/GYN instructed), " go sit

by that child's isolette and don't do anything else " ! (Otherwise I'd not

have been with for another 24 hours.) So when some decisions were

made for us, I think now - " How naive were we " - or stupid?! But they were

really the only decisions to be made under 's circumstances of the

time. I don't know if we'd have made any decisions differently.

The Nissen and g-tube surgery were the worst she'd had at that point. But I

feel it really saved her life. She could never have nursed or bottle fed to

survive those first years, and I feel the ng-tube would have been

detrimental to her oral feeding - which is still going slowly, but it is

progressing.

Her Nissen has since come undone, but she has outgrown the reflux. She

still gets 3 cans of Pediasure via pump overnight. She eats yogurt,

pudding, ice cream, etc. -anything smooth - but is slowly progressing

towards textures. She will eat yogurt with some fruit pieces in it, and she

ate a Fruit RollUp today! We're progressing!

A Funnier Thing Now - although I was ready to KILL her last night.

I have had both kids for Spring Break, including two weekends. Rick has a

job that has seen him taking several field service calls, so he wasn't

around a lot. Nothing happened while I'm doing about 10 things at once,

while playing a game or something else with the kids. I go to church for

choir at an evening service and am gone an hour-and-a-half last night.

Everyone with me, so far? rick is outside working on the truck, and the

kids are in the house.

I got home an 's hair was wet and slicked back. I asked if she had

taken a shower. " No, no shower. " Bath? " No, not a bath. " How is your

hair so wet? " Used hands and put water on it. " OK. Half-an-hour later,

I'm noticing that her hair looks kind of different. When I ask for the

hairbrush, hides it! As her hair becomes more and more dry, I

realize her bangs are about 1/4 " long; so is a spot on top of her head; and

the sides are " layered " in the strangest way! She cut her hair on her

own!!!! And Dad didn't notice the three pairs of scissors on the table

inside the door on one of his numerous trips in the house.

Anyway, short of giving her a buzz cut that is 1/4 " all over, I just have to

leave it. I don't think even a salon could do anything with this. She just

kept telling me her bangs were in her face and she wanted them shorter.

The funniest part was that she later showed me the wastebasket with all the

hair - a HUGE amount - and told me to " fix please " ! Oh well, it will grow

again. I was just so upset that she cut it SO short...and no one who was

home noticed anything!

Sorry Dads, not dumping on you, just wondering how Rick could have missed

this one!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (11) and (8, CHARGE)

Wife of Rick (Mostly patient!)

oganm@...

marilyn@...

> Ken,

> I thought the same thing about not putting Bryce through another

surgery

> to have the nisssan, but after having one at 15 months, his day to day

life

> improved significantly. I wished I had done it sooner. Just my experience.

It

> is so hard to know what is best for these kids sometimes. Even the doctors

> don't often know.

> Deedee

[Guest guest]

Thanks for the chuckle, Marilyn! I had a great time picturing

cutting away as the family busied themselves in and out of the house

around her. A sense of humor is a wonderful thing, isn't it??

Michele W

mom to Aubrie (3 yrs) CHaRgE and (9 yrs)

[Guest guest]

The best part is she had to have dragged a stool from the kitchen or

butler's pantry into the bathroom to do it. And she isn't strong enough to

carry it without alot of noise! And I'm sure it must have taken her a while

to drag it in there too.

I always say Kenny is deaf to the world when the television is on!

Oh, well! Maybe by the time the conference arrives, she'll be in " picture

condition " again!

Friends in CHARGE,

Marilyn Ogan

Mom of Ken (11) and (8, CHARGE), Wife of Rick

oganm@...

marilyn@...

re: reflux

> Thanks for the chuckle, Marilyn! I had a great time picturing

> cutting away as the family busied themselves in and out of the house

> around her. A sense of humor is a wonderful thing, isn't it??

>

> Michele W

> mom to Aubrie (3 yrs) CHaRgE and (9 yrs)

[Guest guest]

Marilyn,

That sounds like something I would've done as a youngster! Ever the independant!!!

You're right, it'll grow back...that is too cute about her asking you to "fix please"... I can just imagine her there cutting & clipping away.

It must be haircut week, Kennedy is going for her first "formal" hair appointment on Thursday. I wonder if she'll even sit for my girl to do her hair. I'm going to let her watch me get mine cut first, then give her her toothbrush so she can brush her teeth the whole time (it's her favourite thing to do).

Mom to Kennedy 3yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: reflux

Talking about the reflux and Nissens brings back lots of memories here!Those were the very, very, VERY early days!They had tried to feed with a tube through the mouth, but everythingthey put in came back up. And they really couldn't position a 4# 10oz.infant in a reclining position very well! had pretty bad reflux andthe doc just said, " really needs to have this procedure called aNissen fundoplication, and we'll place a g-tube during the same surgery.Any questions?" Cut and dry, statement followed by a brief explanation ofwhat it was and why.In many ways, Rick and I were fortunate: had a Nissen and g-tubeplaced when she was 5 days old. She had no (and I mean ZILCH) suck/swallowand they didn't want to go with the ng-tube long term and make her adverseto feedings, as well as the fact of the choanal atresia repair. The ENTsaid that even when was "fully opened" her nasal passages were sosmall, anything could cause big time trouble, so no ng-tube. I'm actuallythankful that was not an option for us. We also weren't given a lot ofother options, like a "thal" or anything else. The docs just said they allagreed that the Nissen fundoplication and g-tube placement was going to bethe best for .At that stage of the game (5 days old, remember), we were still half inshock from the emergency c-section 7 weeks early; having transfer tothe children's hospital at 1 day old; having the atresia surgery at 3 daysold; having a 3-year old who is totally freaking with Grandma and wantingMommy; getting me released to, literally (as my OB/GYN instructed), "go sitby that child's isolette and don't do anything else"! (Otherwise I'd nothave been with for another 24 hours.) So when some decisions weremade for us, I think now - "How naive were we" - or stupid?! But they werereally the only decisions to be made under 's circumstances of thetime. I don't know if we'd have made any decisions differently.The Nissen and g-tube surgery were the worst she'd had at that point. But Ifeel it really saved her life. She could never have nursed or bottle fed tosurvive those first years, and I feel the ng-tube would have beendetrimental to her oral feeding - which is still going slowly, but it isprogressing.Her Nissen has since come undone, but she has outgrown the reflux. Shestill gets 3 cans of Pediasure via pump overnight. She eats yogurt,pudding, ice cream, etc. -anything smooth - but is slowly progressingtowards textures. She will eat yogurt with some fruit pieces in it, and sheate a Fruit RollUp today! We're progressing!A Funnier Thing Now - although I was ready to KILL her last night.I have had both kids for Spring Break, including two weekends. Rick has ajob that has seen him taking several field service calls, so he wasn'taround a lot. Nothing happened while I'm doing about 10 things at once,while playing a game or something else with the kids. I go to church forchoir at an evening service and am gone an hour-and-a-half last night.Everyone with me, so far? rick is outside working on the truck, and thekids are in the house.I got home an 's hair was wet and slicked back. I asked if she hadtaken a shower. "No, no shower." Bath? "No, not a bath." How is yourhair so wet? "Used hands and put water on it." OK. Half-an-hour later,I'm noticing that her hair looks kind of different. When I ask for thehairbrush, hides it! As her hair becomes more and more dry, Irealize her bangs are about 1/4" long; so is a spot on top of her head; andthe sides are "layered" in the strangest way! She cut her hair on herown!!!! And Dad didn't notice the three pairs of scissors on the tableinside the door on one of his numerous trips in the house.Anyway, short of giving her a buzz cut that is 1/4" all over, I just have toleave it. I don't think even a salon could do anything with this. She justkept telling me her bangs were in her face and she wanted them shorter.The funniest part was that she later showed me the wastebasket with all thehair - a HUGE amount - and told me to "fix please"! Oh well, it will growagain. I was just so upset that she cut it SO short...and no one who washome noticed anything!Sorry Dads, not dumping on you, just wondering how Rick could have missedthis one!Friends in CHARGE,Marilyn OganMom of Ken (11) and (8, CHARGE)Wife of Rick (Mostly patient!)oganm@...marilyn@...> Ken,> I thought the same thing about not putting Bryce through anothersurgery> to have the nisssan, but after having one at 15 months, his day to daylife> improved significantly. I wished I had done it sooner. Just my experience.It> is so hard to know what is best for these kids sometimes. Even the doctors> don't often know.> Deedee"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Ken,

In response to your questions about reflux for your one-year old ...

Danny is now 3, but he vomited quite a bit starting at maybe 3 months old.

We're talking 6-8 times a day. The problem continued for a long time, maybe

to age 2? I've forgotten the exact timing, but we tried everything...drugs

(reglan, propsulsid, zantac, prilosec, even some obscure stuff they give to

people who are getting chemotherapy), various formulas, even massage and

some worthless " alternative " treatments I won't bother to discuss. He had a

fundoplication, which helped for awhile, but then started vomiting again.

Finally, he quit on his own...I guess he just outgrew it.

My advice: (1) I'm sorry now that we got the fundoplication. He still can't

burp/belch, so he has to be " vented " through his g-tube several times a day.

They are theoretically reversable surgically, but that is hardly ever done.

If hasn't had a fundo yet AND if the problem is manageable without it

(i.e., he is keeping down sufficient nutrition to live), I personally won't

get a fundo. But I know some people have had better luck with it.

(2) Keep experimenting with different formulas and amounts per feeding. We

had good luck with Nutramigen (smells awful), doing fine on Pedisure now.

(3) Sometimes I feel (briefly) that God hates me and hates Danny, but in my

more rational moments (most of the time) I don't think that God specifically

picks out who will get sick, who will get CHARGE, which apples on the tree

will get eatten by birds, which apples will sprout into new trees, etc.

There are as many opinions about religion on this listserve as anywhere

else...that's just mine.

-Mike Schwartz in Ventura, California, father of 3-year-old twin boys

(CHaRGE) and

_________________________________________________________________

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