Hi from Dale

February 2, 2000

Thanks Dale: I wish I could arrange Alissa's classes for the afternoon but

they do not offer them. Thanks for the suggestion though maybe when she

gets to high school. Stay well,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Wed, 2 Feb 2000 14:28:38 EST

>

>from Dale, Mom to Katy, age 15, CVID

>

>Don't laugh, Annette, but I solved the morning problem the easy way out. I

>just let Katy sleep 'til noon. We fought about mornings, and fought about

>mornings, until it just wasn't worth it. Of course she was still doing

>school at 11 last night, but she gets to sleep until noon every day except

>Sunday. Now, get this. The Praise Band that she sings with rehearses at

>7:30 a.m. on Sunday morning -- and she never misses. I don't call her!

>She

>sets her alarm, I stay in bed until I hear her leave the house (with

>and who also have early rehearsals) -- then I get up without having

>to ever deal with her. Something about mornings and teenagers just don't

>mix! I'm sure the CVID fatigue plays into this somewhere but I hear it

>from

>all the parents of teenagers.

>

>Autumn, our prayers are very much with you and have been especially over

>the

>weekend. Did you have a chance to meet with the heart surgeon on Monday

>or

>did that get rescheduled? I'm praying that God will grant you the

>strength

>to keep juggling these two very precious bundles. Give them an extra hug

>from me.

>

>Destiny, welcome to the waiting line! It is very easy to get caught in

>the

>trap of just waiting. I HATE WAITING. But it seems that I've wasted so

>much time just waiting. I'm getting better about not putting life on hold

>while I wait for a report. Life is too rich and full and wonderful to

>waste

>a single day of it.

>

>I'm so excited today. got a raise at work and he says I can hire a

>gardener to mow and trim the yards. I just met with one and the price is

>right so I will have a pretty lawn and flower beds. Thank you, Jesus,

>for

>the little blessings that make up a day! My body can only do so much

>around here. I'm so grateful to have a supportive husband to keep me

>going!

> For all of you buried in the snow -- it's 60 degrees here, the tulip

>trees are blooming, the daffodil's are fat and almost ready to burst, the

>acacia trees are bright yellow and some of the fruit trees are budding

>pink.

>

>Gotta get busy.

>

>In His service,

>Dale

______________________________________________________

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February 2, 2000

thanks Beth: Yes I believe they learn how to play along with the illness.

And the dragging rear syndrome is quite different than her sicknesss that

pulls her down. Thanks for the imput.]

God Bless,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: RE: Hi from Dale

>Date: Wed, 02 Feb 2000 09:03:34 -0500

>

>Annette,

> I,too, have this same problem with Wade every morning & it seldom matters

>if he goes to bed early or not. His bedtime is 9:00pm & he constantly

>reminds me that his bedtime is 30 minutes to an hour earlier than his

>friends! My answer to that is that different people's bodies need different

>amounts of rest,etc.... Two things have helped with our " morning madness "

>recently....we started carpooling for school & the other family does the

>mornings & I do the afternoons, so if Wade is late he gets " razzed " by the

>other students in the car, at school & by me! Secondly....I started taking

>away a priviledge for not cooperating with me in the mornings. I usually

>don't take away anything huge & it is lost for the day that the trouble

>occurs (ie: no phone calls, in or out, on Tuesday due to mouthyness &

>uncooperativeness getting up & ready for school on Tuesday morning). I tell

>him what he has lost before he leaves the house for school so that I am

>being " fair " by not springing it on him when he gets home from school. I

>have only had to do this 2 or 3 times & now we rarely have morning problems

>unless it is me who oversleeps! I don't punish him for that. Good luck & I

>hope that your mornings get easier! Also, I can tell(as I'm sure you can

>also) if Wade is slow & droopy due to illness & that is a different issue.

>I have discovered that sometimes Wade will " play the situation " for all

>it's worth & that usually does NOT happen when he's sick!!! Pretty

>normal,huh?! Alot of this began for us as we entered this WONDERFUL

>pre-pubescent stage of 12/13 & girls are usually maturing faster than boys

>at this stage, so you may want to entertain that idea with Alissa as well.

>Sorry for the novel...hope you can scavenge a little something useful from

>all this rambling! Have a GREAT day! The sun is FINALLY shining here in

>Michigan today!!

>

>Beth- Mom to WAde, 13yrs. with CVID; GERD post Nissen; Asthma; Chronic

>Sinusitis; Neutropenia;IVIG;

>

>At 06:11 AM 2/2/00 MST, you wrote:

> >

> >Thanks Ursula: My brother is suppose to have a copy of the trust and my

> >fathers financial statement for me, to air things out. He is going to

>have

> >the banker notify us if he starts spending way out of his league. I have

>a

> >question on my daughter every morning having to fight to get up, she can

> >just lay down anywhere and go to sleep. Later in the day she is better

>but

> >the mornings are a battle to brush her teeth and eat her breakfast. Does

> >anyone have this with their kids?

> >annette and alissa

> >

> >>

> >>Reply-To: PedPIDonelist

> >>To: <PedPIDonelist>

> >>Subject: RE: Hi from Dale

> >>Date: Tue, 1 Feb 2000 19:06:47 -0500

> >>

> >>Annette - the problems that you are facing at the moment regarding your

> >>father are by no means stupid. They sound very real and very

>concerning.

> >>Please do not feel afraid to use us as a sounding board for every day

> >>issues. It's on of the main reasons I've recently added a Family Issues

> >>page to the PedPID site. There are other issues in life than this

>disease

> >>and these can be something that the list can also send support about.

>I'm

> >>actually glad you feel comfortable enough with the members to vent and

> >>share

> >>feelings. I have no experience in this area but you might also search

>the

> >>internet for Elderlaws. These deal with living wills, estates, trusts,

>all

> >>the issues that are faced by people in their " golden " years.

> >>

> >>Good luck and I wish I could be of more help.

> >>Ursula - & Macey (4 yr old w/CVID) mom

> >>

> >> Re: Hi from Dale

> >>

> >>Dear Dale: Sorry to have complained about such a stupid problem, but

>when

> >>they occur, it was overwhelming. That is great you have a date with

>your

> >>son, I hope you both have an enjoyable evening. Hope Katy is doing well

> >>and

> >>flourishing in the theatre.

> >>God Bless,

> >>annette and alissa

> >>

> >

> >______________________________________________________

> >Get Your Private, Free Email at http://www.hotmail.com

> >

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

February 2, 2000

Thank you Dale you just made me laugh for the first time today! it has been a

rough one! God does tend to bless us in many little ways to keep us going!

Destiny

February 2, 2000

Dale,

Thanks for the sunshine report!

April 16, 2000

dear dale: thank you and glad Katy is doing so well and what a terrific dad,

annette

>From: dalemweath@...

>Reply-To: PedPIDegroups

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Mon, 17 Apr 2000 01:41:27 EDT

>

>from Dale, Mom to Katy, 15, CVID

>

>Sorry I've been pre-occupied with teenage life around here. I read all the

>mail, just don't have time to write. Annette, please know that I am

>praying

>for the hearing tomorrow. Let's hope this makes the military take a second

>look at assigning your husband out of country. Sometimes we don't

>understand why things happen the way they do. We just have to ride it out

>and know that God has something planned for our good.

>

>We finished Bye Bye Birdie and Katy stayed well for the entire 8 show run.

>She (and I) were tired but not sick. That's something we never dreamed of

>before IVIG.

>Then we immediately went into rehearsals for a big Easter production at our

>church that was presented today at 3 and 6 p.m. My husband, , plays

>the piano with a 20 piece orchestra, and a 45 piece choir. My son,

>ran spot lights, Katy and I helped with the drama depicting the life of

>Christ, and I was backstage manager and general flunky! It was a

>wonderful

>production and was so much fun, but I'm too tired to move!

>

>Someone asked how long before IVIG started working -- One of the best

>pieces

>of advice I heard early on was to sit down right now and write out all of

>your child's symptoms, their frequency, severity, and how long each lasts.

>Then review it every 3 to 6 months. As humans we tend to forget

>(thankfully) how bad it was 6 months ago. Writing it down really opened my

>eyes to the progress Katy is making. At the end of 1 year on IVIG, I could

>honestly say that we had seen a major improvement mostly in fatigue level.

>Her sleeping went from 15 hours/day down to 12. Now it's down to 10 and

>she

>doesn't get sick when it's occasionally shorter. Now that we've completed

>2

>years on IVIG, I'm seeing even more improvement. It seems she's not

>getting

>as many rashes, and no where near the number of viruses that she used to

>get.

> She still gets more than normal, but they are not piggy-backing this year

>like they did last year. It's like she's building up a tolerance for

>viruses.

>

>Do we see a decline in health the week before infusion? Yes. But that's

>just started recently. We just checked trough levels to make sure she's

>not

>running low. Haven't got those results back yet.

>

>We are also talking with a surgeon in a couple of weeks about a port.

>Katy's

>ready for a port and everyone is telling us it's time -- but she's so

>funny.

> She only wants one if she can still wear strapless evening gowns. So,

>she

>wants it located on her abdomen! I told her it wouldn't hurt to ask!

>Oh

>the joys of teenagers and their pride.

>

>Well, I've rambled long enough. We're taking a week off of school for

>spring

>break this week, so I'll be in and out -- mostly at the malls if Katy gets

>her way!

>

>Autumn, we're still praying for and Mark. How about an update? Any

>improvement in the breathing?

>

>In His service,

>Dale

>

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April 17, 2000

Hi Dale,

This'll be quick, as I've got to get some sleep before I fall asleep at

this desk! But I did remember when reading part of your message that

I'd forgotten to reply to a previous message.

>

> We are also talking with a surgeon in a couple of weeks about a port. Katy's

> ready for a port and everyone is telling us it's time -- but she's so funny.

> She only wants one if she can still wear strapless evening gowns. So, she

> wants it located on her abdomen! I told her it wouldn't hurt to ask! Oh

> the joys of teenagers and their pride.

>

I think you asked if Katy could talk to me about ports... certainly!

I've had two now, and although they have greatly simplified my life

(being on IV meds up to 20 hours a day for almost 6 months this year,

for example -- could never have done that with peripheral IVs at home!),

there are certainly some down sides. I am sure the surgeon will tell

you most of them - like the potential infection risk, etc. You've heard

all of that here before, I'm sure. But I remember you said that Katy

wanted it for self-image reasons, because the peripherals weren't

healing well after the IVs were removed. That reminds me of me -- I

also heal poorly (I think we realized in the first few months of this

group that many of us have similar, somewhat rare, traits - like ghostly

pale skin and (more pertinently for this topic) inability to form normal

scars). My surgical scars and even IV scars form what are called

cheloids - they are raised, bright pink, painful-looking (though not all

that uncomfortable... occasionally itchy and slightly tender when

scratched) scars. My port insertion scar on the left (from over 2 years

ago) has healed to some extent... it used to be very raised and red.

Now it has become more flush with the skin and less red. But it looks

like it's " pulling " at the edges, where the scar tissue meets the

healthy skin. But, with a little pancake powder, I was able to wear

strapless dresses with that. The place where I insert the port needle

each time also formed a raised, 2mm or so circle - looks like a small

mosquito bite. I actually like it, because it's my landmark for where

to put the needle in! But that also had to be covered by powder to wear

something strapless.

The scar from my first port removal, on the left, is still very red and

raised. It was inserted in October, I believe, and it's still very

prominent. Whereas a regular person would have a tiny white line (no

wider than a millimeter) for a scar, mine is about 6-8 mm across, and it

is raised (about 2mm high). It's bright pink and itches at times. I

don't know if or when it will heal more attractively... it may take a

few years, as the other one did. I never realized I healed so oddly,

until I saw my brother's appendix scar. Or rather, couldn't even FIND

my brother's appendix scar without really searching. No one would ever

miss my scars! I have a similar scar on the right side of my chest from

where the well of the new port was inserted under the skin. I have the

little " target " dot in the middle of the well, where the needle always

goes in, and on my neck, where they fed the line through the external

jugular, I have a scar where they inserted the line (about 3mm by 3mm,

also a cheloid). I'm not sure if Katy's healing issues are like mine in

terms of how they look, but I would say that if any of this healing

pattern talk sounds familiar, she may want to really think hard about

wanting a port for cosmetic reasons... I would never in a million years

wear a strapless dress now. I would imagine I'll be slightly

self-conscious about tank tops and such in the summer, as well. I am

okay with the appearance issues -- the simple fact is that the medical

benefits of having a port outweigh my concerns over the appearance of

the port scars. If Katy's having significant trouble with access, it

may make sense (and yes, they can put it in the abdomen... I've seen it

done and heard of it in other people - I think Magowan, whose mom

Kirstie is in this group, has also had a port in her abdomen). I waited

to get a port until they really didn't think I had many useable vessels

at all. In fact, when I needed blood cultures a few weeks ago, they

couldn't find anywhere for the peripheral set, so they ended up using

the artery in my wrist (like a blood gas test)... everything else was

shot. So I really didn't have a choice, particularly since I really

need central venous access anyway for the Amphotericin infusions. If I

did have a choice and had the type of scarring that I have now, I think

I might have been mad at myself for ruining my chances at wearing

certain clothes or looking healthy to the average passer-by when wearing

tanks or swimsuits during the summer. Does that make sense?

I'd be happy to have someone take a picture of my scars and send them to

you in the near future, if it might help Katy see what they look like.

I'll probably not be back in California again until late June, so if

she's not anxious to get this done really soon, we could arrange to meet

for lunch or something when I'm back in the area, and she can see the

scars then, if that would make more sense. Either is fine with me.

So...after saying all of this, I should say that of course, not everyone

scars like this (in fact, very few people at all), but it sounds like

she and I may have similar healing patterns. It has to do with the way

granulation tissue is filled into a scar during the healing process.

It's very common for African American people to form cheloids when they

have injuries, but very rare for caucasians, particularly those of

Western European background (as I am). It probably has to do with the T

cells miscommunicating with the other cells involved in the healing

process (macrophages, etc) and not laying down the architecture of the

scar properly. When I got the first big, nasty one, I said, 'oh, I'll

just get plastic surgery on it someday' (because I assumed I'd just not

kept the edges of the incision together properly when it was healing or

something, and it was a one-time deal - all my other surgery has been

laparoscopic, so I just had little bumps where they healed, and I didn't

even put it together that these pink bumps were a smaller version of

what a real scar might look like). But now we know that doing surgery

to cut out the scar in some attempt to get it to heal better the second

time around, will probably be useless, and will likely just result in a

bigger scar the second time around. The fact is, I've already done

what you're supposed to in order to minimize scar tissue and promote

" clean " healing of the edges to one another. My doctors made so much fun

of me after my port removal and insertion procedures this Fall, because

I refused to take the steristrips off the scars, preferring to wait

until they fell off themselves (because they tell you that they will).

They became full of clothing fuzz as the ends started peeling up little

by little, and my doctors kept saying, 'oh, just peel them off,

already!'. But I told them about how poorly I heal and told them that I

really wanted the steristrips to hold the edges of the scar together for

as long as possible, so that it had the best possible chance to heal

properly. But even that didn't make a difference, in the end. Oh,

well... at least I know I tried!

I hope that this lends a tiny bit of experience to the whole port

investigation process. As I said, what I have isn't true for everyone,

and she could come through it with a fine white line no bigger than a

little piece of string, easily disguised by a tiny bit of powder if

dressing up. The surgeon may be able to look at any other scars she has

and make a guess about whether he thought it might heal cleanly or leave

a cheloid. And of course, there are so many other considerations in

this process. To be honest, my bias is never to get a port unless it's

needed without question for regular IV access in someone who has really

used up all or very nearly all of their veins. The heightened risk of

infection is just too worrisome to me to do it for pure cosmetic

reasons. But everyone has to make that risk/benefit appraisal based on

their own needs, experiences, and plans for the future. Please let us

know how the appt with the surgeon goes.

I'm thrilled to hear that Katy came through the play still doing well,

after all those performances! How amazing for her... and it's just

amazing, how far she's come in the last few years! I hope things

continue to go well for her, and that you have a great Spring Break.

Sounds like everyone could use a little down time for a few days!

Feel free to ask more questions, if I can help more with the port issue.

Please tell Katy I say hello!

Take care,

PS: hope this is coherent... I'm not going to check it, as I'll likely

fall asleep sitting up if I do!

April 17, 2000

,

Thanks for your comments about your scarring. Obviously since Kody is only

four years old, I am not worried " yet " about ports, but, he does scar like

you do. His biopsy on his knee left a 1 1/2 inch long very wide red bulging

scar. And his PIC line scars are also red and raised, even the IV ones in his

hands have left red raised scars. He also says they itch. I didn't realize

that this wasn't a common thing with immune deficient kids, I thought it was

part of it. He does also have the ghastly pale skin...which I also wasn't

worried about because I don't have an immune problem myself and I am ghastly

pale (an embarrassment in the summer since I don't tan either). Kody also has

troubles with warts from time to time.

My question is this...is bedwetting a possible part of immune problems? My

docs keep telling me not to worry about it, that he is young yet and should

outgrow it and if he hasn't by age 8 then they will talk about doing

something. But I have seen here and there references to it on PID sites but

nothing that really talks about it.

Annette-Still praying for you and your family. I was a foster Mom for a while

and have been to the hearings for child removal and even the ones for

terminating parents rights before, if you have any questions feel free to

contact me.

Hope all our pumpkins are doing better today and are able to enjoy Easter

with their families...especially hope this for Annette.

Diane, Mom to Kody age 4, IgG def. 2 & 3, asthma

April 17, 2000

Carol,

Also many thanks for reassuring me about the bedwetting thing. I do use pull

ups for Kody, but, at times he just wants to try to go without. I hope he out

grows it soon! He seemed the most embarrassed by it during our stay in the

hospital. He was quite offended by the nurse calling it his diaper! As for

kidney problems, so far he doesn't have any...it seems everyday he has a new

" symptom " so it wouldn't surprise me.

Anyway, thanks again!

Diane, Mom to Kody, otherwise known as Batman

April 17, 2000

Diane,

carol here josh mom. he is 5yr old and still wet's his bed. We had kidney

problems a couple years ago but now that is resolved. Anyway the doctor told me

that he would outgrow it and it is normal. If he does not then there is a

medication. We use pull ups at night and josh seems very comfortable with this

situation. Hang in there this will pass.

carol mother to josh 5 yr. old(CVID,asthma,steroid dependent,and much more)

Re: Hi from Dale