Beth

[Guest guest]

In a message dated 2/7/02 1:23:49 AM Pacific Standard Time,

writes:

> . I think there is way too much

> distraction for PB. He prefers to go to a quiet work room and be with the

> aide or kids in one-on-one situations.

>

> Hope this is a little helpful.

>

>

You hit the nail on the head, Beth..... " one on one " .... does MUCH

better with me, and the OT that comes to the house (unfortunately, I can't

use her for 's assess/eval as she is from the school dist.!!).

Your post was very informative....I am copying it for school.....is that

okay?

[Guest guest]

Hi Beth,

Jamey uses both the Kineret and Vioxx daily.

The Kineret needs to " build up " in the system. It takes about 2

weeks for it to kick in.

We had a wild night last night with TPN. The pump for some reason

malfunctioned and Jamey flushed blood into his line. It scared me

half to death, and I couldn't get the clamps closed fast enough. The

home care nurse came with a new pump and was here till about 2 a.m.

Hopefully we'll get some rest today!

Sincerely,

[Guest guest]

Hi ,

Thanks for the info. I hope that things have calmed down with the tpn & you

& Jamey had more restful nights than you had on Sunday. How long do they

anticipate having Jamey on the tpn? Have you seen any changes from it yet?

I'm not very familiar with tpn & how long it takes to kick in....I basically

just know what it is & what it is used for. I will keep you, Jamey & your

family in my prayers.

Thanks again for the Kineret info! Have a blessed day!

Love & Hugs,

Beth, Mom to Wade, 15 (CVID,etc)

>From: " mich2minn " <Mich2minn@...>

>Reply-

>

>Subject: Re: Beth

>Date: Mon, 29 Apr 2002 15:51:17 -0000

>

>Hi Beth,

>

>Jamey uses both the Kineret and Vioxx daily.

>

>The Kineret needs to " build up " in the system. It takes about 2

>weeks for it to kick in.

>

>We had a wild night last night with TPN. The pump for some reason

>malfunctioned and Jamey flushed blood into his line. It scared me

>half to death, and I couldn't get the clamps closed fast enough. The

>home care nurse came with a new pump and was here till about 2 a.m.

>

>Hopefully we'll get some rest today!

>Sincerely,

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hi,

Thanks for the thoughts & praters & info! I was wondering about the drop

seizures because definitely has some neuroligical " stuff " happening

with this illness & they haven't figured out what or why yet. Over the last

48 -72 hours, he has fallen 4 or 5 times. He gets up, starts to move & just

falls. He denies feeling dizzy & he falls hard, with no apparent effort to

catch himself or break the fall. It's almost as if he doesn't know he's

falling until he hits the floor. Sometimes it happens aftre he has been

standing or walking, it's not solely when he first stands up.Do you know if

a nerve compression can cause this type of reaction? Any thoughts? Wade sees

the ped again this morning, so hopefully some of the csf tests will be back

or some pece of this puzzle will fall into place so that something can be

done to help relieve his pain.

As far as the sinus stuff goes, unfortunately wwe are old pros at that. Wade

has had 22 sinus surgeries in his lifetime & more ct scans, oral

antibiotics,iv antibiotics, washes,etc. than I can count. He actually has

another sinus infection now also & is back on Omnicef & also the nebulized

antibiotics. Have you tried those yet with Kody? They are very easy to use &

I feel like they have helped to keep things at bay, along with either oral

abx's or iv abx's. Is Kody starting iv antibiotics today? Which one? You

might want to ask about using the same antibiotic in the nebulized form

along with. That really seemed to help clear things faster with Wade the

last time. Just a thought. Wade gets pale & pasty looking with a severe

sinus infection too. Please feel free to ask me any questions you may have

about sinus stuff or the special ed, as we are about halfway through on that

process, although you probably know as much or more than I do at this point.

I'm always here to listen & support, even if I cry along with you!

Gotta run take Wade for his appt. I'll keep you posted. Big (((HUGS))) to my

Batman! So glad he likes that hat! Keep your chin up & I'll talk to you

soon.

Love & hugs,

Beth

>From: Diane Schmidt <schmidtzoo@...>

>Reply-

>

>Subject: Re:Beth

>Date: Mon, 13 May 2002 09:25:44 -0700

>

>Opps sorry forgot to tell you what the drop seizures look like! Kody's

>drop seizures were strange. I didn't know that was what was happening.

>He'd just fall down, get right back up and keep going. I thought he was

>clumsy. I thought I bought his shoes too big and they were tripping him

>up. I thought he was tired or his legs hurt. I thought he just didn't

>pick his feet up when he walked. He would just be walking or standing

>there and kind of collapse like his bones were suddenly jello. Then in

>mere seconds up he'd pop as though nothing had happened at all. Very

>weird. When questioned he didn't know he fell. Why do you ask? Do you

>think is experiencing them? I sure hope not! Poor kid has had

>enough!!

>Diane

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

Opps sorry forgot to tell you what the drop seizures look like! Kody's

drop seizures were strange. I didn't know that was what was happening.

He'd just fall down, get right back up and keep going. I thought he was

clumsy. I thought I bought his shoes too big and they were tripping him

up. I thought he was tired or his legs hurt. I thought he just didn't

pick his feet up when he walked. He would just be walking or standing

there and kind of collapse like his bones were suddenly jello. Then in

mere seconds up he'd pop as though nothing had happened at all. Very

weird. When questioned he didn't know he fell. Why do you ask? Do you

think is experiencing them? I sure hope not! Poor kid has had

enough!!

Diane

[Guest guest]

It sure sounds like the drop seizures. Kody never tried to stop his fall

either. Keep me posted as to how is doing. Prayers going up

steady for him!

Diane

[Guest guest]

Hi Beth: I was so happy to see a post from you. I'm sorry your not feeling real good though. Sounds like CJ is doing well.

Concerning your desire to have another baby, have you talked to CJs doctor? Colton's told Jodi that if she had a girl the chances of her having AIH went up considerably. Jodi and her husband are not together right now and I think it will end up in divorce but she too would like to have another child.

Of course it will be their decision if she remarries but knowing what I know I sure wouldn't want to take the chance. Seeing what Jodi went through and knowing she could not be a donor if it were needed scares the heck out of me.

I don't mean it to sound like I think your crazy but please check into it every way to Sunday before making your decision and PLEASE listen to your doctors because we want you to stay safe too.

I Think Of You Often. God bless you and your family.

Genny

[Guest guest]

In a message dated 05/30/2002 7:16:24 PM Pacific Daylight Time,

sweetpea777@... writes:

> It's

> called, Squamous cell carcinoma, which does spread and the only reason

> he thinks it's this is because of the crusty part right near it. I

Hi ette, yes it can spread, but it is a very very slow spread. One of

the times my Dad had lung cancer treatment they thought it could be a

sqaumous cell rather than the other type he has had off an on for 24 years,

so I did a lot of research. Hang in there, like I said my uncle had that

surgery for basal cell and it was an involved surgery and the very next week

he drove over here from San , I was amazed! And he is in his late

'60's.

Take care,

Beth

[Guest guest]

Hi Diane,

I would be interested in those De's pictures too. Do you have the

email of the person or website?We had a test for because she had

the heart defect and the immune problem but were told that she had a 75%

chance that is was not De's--whatever that means. As the test was done

over 4 years ago maybe it was not the most up to date test.

Thanks,

Martha (mom to Chrissy, IgA deficiency, Polysaccharide coated antibody

deficiency, truncus arteriosus etc.)

[Guest guest]

No problem, Martha. I've transferred them to my other computer though (

I wanted to print them, don't have the printer set up to my laptop) so I

probably won't get to it until tomorrow, but be on the look out from a

" withlovefromdee@... " address that is me! From what I have

learned...and researched...and am coming to understand, most tests for

Di is the FISH test, and they look for the 22q11 deletion only.

Truth is, you can have Di with no 22q11 deletion, but a different

cause, like a deletion on chromosome 10. Not only that, but it is

possible to have Di and have such a small deletion that it isn't

picked up by the FISH. That doesn't mean that your child is less

effected by it though. Now most websites, even parts of Shprintzen's

website, all refer to only the 22q11 deletion ( " no deletion, no

Di " seems to be the quote of the day) but yet in other papers

(even written by Shprintzen) and reports it is clearly stated that is

not true. So when you read some of the websites I will send you,

remember that. I am not really sure why other causes for Di are so

overlooked, granted the 22q11 is the main reason why but still it seems

to me that maybe a lot of kids aren't being diagnosed because doctors

are being led to believe that 22q11 is the ONLY reason. Anyhow, be on

the look out for the pictures from my aol address.

Diane, Mom to Kody

[Guest guest]

Hi Sandi,

Perhaps my explanation was not very clear...I think I said that steriods CAN

(not always) cause a super infection. The ENT ( & other docs as

well)explained it to me not as something that supresses the immune system

but that oral steroids in the face of a bacterial infection can cause the

INFECTION to worsen & often become drug resistant & harder to treat. Wade

has had one instance where that actually happened & that is how the

conversation of steroids & bacteria came about. He has also been given

prednisone with antbiotics for pneumonia several times & the subject of

super infection has not been mentioned.I don't recall ever using oral

steriods with a sinus infection, but we have used topical steroids & liquid

steroids instilled through the sinus catheters during a sinus

infection.Perhaps it is only relative with certain bacteria? I know that we

try to stay away from oral steroids as much as possible because they do

supress the immune system & I have also been told that they can interfere

with the ivig doing it's job properly. Maybe it's different with

because he's not on ivig? Or maybe it varies with the different types of

PID? I have no idea. Again, I guess we're back to Ursula's favorite quote:

" Ask 5 docs the same question & you'll get 6 different answers " ! You just

gotta LOVE this disease!

Hope Brain is doing well!

Beth, Mom to Wade,15 (CVID,GERD,JRA,Asthma,Chronic Sinusitis,ADD,IVIG &

STILL trying to recover from TWO recent bouts of Aseptic Meningitis)

>From: SassyKay418@...

>Reply-

>

>Subject: Beth

>Date: Sat, 8 Jun 2002 13:49:32 EDT

>

>Hi Beth,

> You mentioned in your e-mail that steroids cause a " super infection " of

>the

>sinuses. I have always been told that short term steroids boost the immune

>system and help the sinuses clear (it works with every time). It is

>with long term use that the immune system is suppressed.

>Sandi, 's Mom

>

>

>

[Guest guest]

Thanks Beth! I think the Prednisone helps because his sinus tissues

swell shut when he is infected. Without the steroids, the antibiotics

wouldn't be able to get to the sinuses. But, I don't like it!! I keep the

Prednisone to a bare minimum. You can bet I'll be asking the Ped about the

super infection. Besides, it was his idea for me to join this group

Sandi, 's Mom

[Guest guest]

Sandi,

I would also ask your doc about the Sinuneb machine for nebulized

antibiotics. You can also use it for other nebulized meds & prednisone is

one of the ones on the list. Their claim is that hte med stays where it

needs to be to treat the sinuses & there are little to no side effects. We

have used it twice now...once to treat a stubborn sinus infection & we used

it at the same time as the iv abx's & then we used it another time intially

with Omnicef & then by itself for an additional 2 weeks. I have seen a

significant difference in the amount of time it takes Wade to clear a sinus

infection with the sinuneb rx's vs. without. our insurance totally covered

the cost of the machine & I paid my regular prescription co-pay for the

actual drugs ($20). Everything is shipped directly to your house & they

always call to check on you. You can learn more about it at their website

<www.sinuspharmacy.com>. It might be worth asking about anyway. The

treatments are quicker than the asthma nebs & it is not invasive, you just

hold the pipe under your nose & breathe regularly.

Good Luck! Hope Brain id oing well & enjoying the beginning of summer!

Beth, Mom to Wade,15 (CVID,etc...)

>From: SassyKay418@...

>Reply-

>

>Subject: Re: Beth

>Date: Sun, 9 Jun 2002 02:28:53 EDT

>

>Thanks Beth! I think the Prednisone helps because his sinus tissues

>swell shut when he is infected. Without the steroids, the antibiotics

>wouldn't be able to get to the sinuses. But, I don't like it!! I keep the

>Prednisone to a bare minimum. You can bet I'll be asking the Ped about the

>super infection. Besides, it was his idea for me to join this group

>Sandi, 's Mom

>

>

>

[Guest guest]

Beth,

Thank you for the information on the Sinuneb. I plan on asking the Ped

about it on our next trip. I hope you guys are enjoying the summer also!!

We have a beautiful day here.

Sandi, 's Mom

[Guest guest]

Hi Beth,

I hope Ben's first communion is the best! Have a wonderful weekend.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Beth,

I hope your dh returns well rested from his stay at the Heartbreak Hotel LOL

and Ben is ready to go to the barber with him.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Dear Beth,

a huge thank you also. She is having such a hard time and feels like a

prisoner in her sisters home. She literally has to sneak food when they go

to bed or leave the house in the morning. She told me that the police have

been there several times for her sisters actions. Bridget deserves so much

more. Thank your for not letting me down.

Love, Sue #2

[Guest guest]

From: Beth, Mom to Wade, 15 (CVID,etc...) & a TERRIFIC case of

teenageritits :~ LOL

Hi Diane,

Thanks for thinking of us! Wade is hanging in there...driving me

insane with school issues (you know ALL the teachers LIE about missing work

& they are ALL out to get him ); socializing a little too much & fighting

the sinus infection from & **((! He has had this one going on for at least 3

months & probably longer, has failed 3 rounds of antibiotics & has had to

resort to taking Percocet to be able to sleep at night due to the extreme

sinus pressure. He went back to the doctor again on Monday & he has a CT

scan scheduled for next Monday. Ped thinks we'll probably end up back at ENT

& on iv antibiotics but wants to wait for the CT results to be sure.

That's too funny about Kody thinking that elephants have samarai swords!

I thought about you & Kody ALOT during the IDF retreat, as I sat with a

family with a daughter who has Di Syndrome, among other things. They

were very nice & had quite a bit of knowledge on Di...it was

interesting listening to them. You & Kody have to go to the next one....it

was great fun! Even enjoyed himself & made a few new friends.

Happy Halloween to my favorite Batman!

Love & Hugs,

Beth

>From: schmidtzoo2002@...

>Reply-

>

>Subject: Beth

>Date: Wed, 30 Oct 2002 13:08:30 -0500

>

>Hey Beth! How is Wade? I was just thinking about you the other day.

>There was a sea of Batman costumes in the store, and I couldn't help but

>think of our other Batman! Kody is going as an elephant this year, he chose

>the costume a long time ago, but now I am having trouble convincing him

>that elephants don't have samari swords. Sigh. I guess we could have a

>superhero elephant????

>Diane, Mom to Kody

>

> " Beth Rathburn " <justinsmom87@...> wrote:

>

> >From: Beth, Mom to Wade,15 (CVID,etc.)

> >

> >le & ,

> >Congratulations on your wish trip! Here's hoping you have a BLAST!!!!

> >Take lots of photos & send us one, please.

> >, we want a full report when you return...5

> >pages,typed,double-spaced....LOL!

> >Have fun!

> >Love & Hugs,

> >Beth

> >

> >

> >

> >

> >

> >

> >>From: " le Penne " <DANIELLEPENNE@...>

> >>Reply-

> >>

> >>Subject: Re: IDF survey?

> >>Date: Tue, 29 Oct 2002 23:58:25 -0500

> >>

> >>Thank you very much

> >>

> >>We leave tommorow for 's MAke A Wish.........HE

> >>wished to meet the Blue Angels so they are flying us

> >>to Florida to meet them.

> >>

> >>We will be back on Monday.

> >>le

> >>

> >

> >

> >_________________________________________________________________

> >Get faster connections -- switch to MSN Internet Access!

> >http://resourcecenter.msn.com/access/plans/default.asp

> >

> >

> >

> >This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

> >

> >

[Guest guest]

From: Beth, Mom to Wade, 15 (CVID,etc...) & a TERRIFIC case of

teenageritits :~ LOL

Hi Diane,

Thanks for thinking of us! Wade is hanging in there...driving me

insane with school issues (you know ALL the teachers LIE about missing work

& they are ALL out to get him ); socializing a little too much & fighting

the sinus infection from & **((! He has had this one going on for at least 3

months & probably longer, has failed 3 rounds of antibiotics & has had to

resort to taking Percocet to be able to sleep at night due to the extreme

sinus pressure. He went back to the doctor again on Monday & he has a CT

scan scheduled for next Monday. Ped thinks we'll probably end up back at ENT

& on iv antibiotics but wants to wait for the CT results to be sure.

That's too funny about Kody thinking that elephants have samarai swords!

I thought about you & Kody ALOT during the IDF retreat, as I sat with a

family with a daughter who has Di Syndrome, among other things. They

were very nice & had quite a bit of knowledge on Di...it was

interesting listening to them. You & Kody have to go to the next one....it

was great fun! Even enjoyed himself & made a few new friends.

Happy Halloween to my favorite Batman!

Love & Hugs,

Beth

>From: schmidtzoo2002@...

>Reply-

>

>Subject: Beth

>Date: Wed, 30 Oct 2002 13:08:30 -0500

>

>Hey Beth! How is Wade? I was just thinking about you the other day.

>There was a sea of Batman costumes in the store, and I couldn't help but

>think of our other Batman! Kody is going as an elephant this year, he chose

>the costume a long time ago, but now I am having trouble convincing him

>that elephants don't have samari swords. Sigh. I guess we could have a

>superhero elephant????

>Diane, Mom to Kody

>

> " Beth Rathburn " <justinsmom87@...> wrote:

>

> >From: Beth, Mom to Wade,15 (CVID,etc.)

> >

> >le & ,

> >Congratulations on your wish trip! Here's hoping you have a BLAST!!!!

> >Take lots of photos & send us one, please.

> >, we want a full report when you return...5

> >pages,typed,double-spaced....LOL!

> >Have fun!

> >Love & Hugs,

> >Beth

> >

> >

> >

> >

> >

> >

> >>From: " le Penne " <DANIELLEPENNE@...>

> >>Reply-

> >>

> >>Subject: Re: IDF survey?

> >>Date: Tue, 29 Oct 2002 23:58:25 -0500

> >>

> >>Thank you very much

> >>

> >>We leave tommorow for 's MAke A Wish.........HE

> >>wished to meet the Blue Angels so they are flying us

> >>to Florida to meet them.

> >>

> >>We will be back on Monday.

> >>le

> >>

> >

> >

> >_________________________________________________________________

> >Get faster connections -- switch to MSN Internet Access!

> >http://resourcecenter.msn.com/access/plans/default.asp

> >

> >

> >

> >This forum is open to parents and caregivers of children diagnosed with a

>Primary Immune Deficiency. Opinions or medical advice stated here are the

>sole responsibility of the poster and should not be taken as professional

>advice.

> >

> >

[Guest guest]

In a message dated 4/18/03 3:34:29 AM Central Daylight Time,

writes:

> Karyn, has the ABA helped? Has it been mostly for skills or has 's

> behavior been helped at all by it? And how is he dealing with his little

> brother these days? How are YOU coping? Is respite still available?

> Please write when you can.

>

In a sad sort of way I'm glad I'm not the only one whose kid " flunked " out of

special Olympics and integrated youth group and all those other things that

kids with ds are supposed to be sooo good at and really enjoy.

is doing well with his ABA. It is amazing what that kid knows and

doesn't use. Now we getting him to use some of that knowledge. He

consistently makes progress on skills, mostly cutting, learning letters and

sounds, communication-sentence or phrase use, I see.., I hear...., question

asking, etc, moving through his reading program that they also use in school.

We have worked on self regulation starting with learning to label emotions

and moving on from there. It helps but still has a long way to go. Lots of

times he remembers to take a deep breath rather than swearing. It is nice not

to hear the swearing constantly but it still is several times a day. The

aggression and destruction is greatly reduced which is major improvement.

We are supposed to have another year and 1/2 of therapy before he ages out

but our new Governor has proposed to eliminate intensive in-home therapy as

an MA benefit. Advocates have gotten him to commit to funding but there will

still be cuts. Most likely the kids like who are older and have been in

the program for several years. Fortunately I may be able to get it funded

through a different program but still worry about the possibility of no

therapy.

is in a life skills program in middle school. Much different from his

inclusionary elem. school but he is thriving. Much less struggle in the

a.m.He seems to feel much more successful and happy. They still work on

academics but more in the community and things that enjoys.

is generally good with (2 1/2) but toddlers can be very

frustrating and not good behavioral role models. LOL!!!! does lots of

" , No " which gets mad and yelling " no " back at . also

thinks that if he screams long enough will give him what he wants which

is generally true. Not great teaching for the two year old.

We are stuck at home lots more since taking them anywhere together is hair

raising.

We still get monthly respite at the group home and usually send him for x-mas

break and spring break.

Our biggest struggle right now is the lack of sleeping. Actually

getting up several times a night. He is day toilet trained but still wears

pull-ups at night but futzes with them so much that he leaks every time. We

are currently trying bed wetting medication to reduce night time urination

but not helping so far.

I started working part time at our state Autism Society. Only 10 hours a week

and I won't be working much, if at all, during the summer. It is nice to

actually use my brain occasionally. And be with people that speak in

sentences.

Sometimes I feel like I live in several worlds. There is the mom of a 14 year

old with significant behavioral and developmental issues who has therapists

and drs and special ed issues. Then there is the mom of the typical toddler

that goes to play group and drops him at Grandma's and the babysitters.

Boy, what a novel.

Karyn

[Guest guest]

Is that my long lost friend Beth?

I miss you friend. Have not seen you, but know that you are there. How are you, and how kind just to say "hello". You have always been such a good friend. Yes, it's a very hard three weeks, and we still have two to go. Wish that we didn't do this anymore, but that's wishful thinking. Anyway, I will be able to catch up better with everyone, when it is all over. Glad to hear from you Beth. Be well friend.

Love, Sue #2

-- Re: sorry for letting you down friends

Wow Sue, it sounds like you have worked really really hard!!!!!!!!!!!!!! What a success!Beth

[Guest guest]

In a message dated 6/26/2003 6:54:07 AM Eastern Daylight Time, paul.3@...

writes:

> And Charlyne, we had the Texas Instrument " Touch N Tell " boards with

> removable overlays. He learned his shapes and colors from that, and later

> reinfirced his alphabet and numbers. That was the way we figured out that

> he has an incredible memory. But it was also something *he* could control.

>

>

> Hope everyone is staying cool wherever you are. The heat has hit central

> Ohio!

Hi Beth,

I think that's wonderful. I hope Ben is still moving forward. The heat

has hit in the northest too.

Charlyne

Mom to Zeb 10 DS/OCD ?

[Guest guest]

Hi Beth,

I am so happy that the summer was resful for you! Too bad though that

there was the pain. I suppose school starts real soon again? I always

have high regard for teachers. They are so important in everone's life.

Most of us don't really appreciate that fact until many years after we are

out of school. I know I didn't.

Oh, I am glad to know that your dad had a good summer! I never heard of

the Iressa. Then I only know one person at this time who is suffering from

Cancer. I will have to ask her about the Iressa pill. Four months off of

Chemo

was certainly a nice break for him hey?

Your mom is one of those folks who is a true angel. We need more folks

just like her.

I am doing okay Beth. The Stills is mainly under control, and I suffer

usually

from the Fibro or nerve damage. Will be needing fusion surgery in the right

foot in a few months, but otherwise...I really shouldn't complain.

You know Beth, I don't remember what you are taking for the Stills. If you

get

a chance would you let me know? thank you friend.

From Wisconsin

hugs for you Beth! tricia

*****************************************************************************

*******

-- Re: Reynolds

In a message dated 09/01/2003 8:42:57 AM Pacific Daylight Time,

2r1@... writes:

> How are you doing? How has this summer been for you?

> How are your mom & dad?

>

Hi Tricia!

The summer was really restful (since I have the teacher summer vacation) but

really had a summer full of arthritis..... I haven't felt to tired or

sluggish, just pain. And I don't want to complain, but normally the pain is

pretty

well controlled----

My Dad had a good summer, they had put him on Iressa, but sadly it has

stopped working and they are going to need to try something else starting

next week.

For those that Iressa works on though, what a blessing! It is a pill

everyday with minor side effects. But maybe it was in the plan for Dad to

have 4

months off of chemo to regain his strength for his fight. My Mom is just

about

the most wonderful person in the world, she has been there for every one of

our families medical battles for the last 25 years, what an angel we have

in

our family.

Thank you so much for asking, I hope you are doing okay!

Beth

[Guest guest]

Beth, you are my hero! I know that pain of the hips and it is so

very severe. You work, and take such care with your parents. I will

be keeping you and yours in my prayers with hopes that your dad does

not have a tumor and that no matter what you will all be ok. I know

you share the deepest love and that is what will shine always through

your days. Take care and know we are always here for you.

Biggest hugs, Pattymelt

> Hoping your dad stays comfortable and you too..best wishes Liz NJ

[Guest guest]

Beth,

I just wnated to jump on to your post...

My son had his STARband for 21 weeks. At the time, it seemed like an

eternity! Every time I read a graduation post, all I could think of

was that it wasn't us (boohoo) and when would it EVER happen. Now,

looking back on it, 2 months after graduation, it seems like a

million years ago, and that the whole thing was over in the blink of

an eye. Must be sleep deprivation does funny things to your memory!

LOL

Once Dylan graduates, you will be surprised how fast the time has

gone by!

- mom to Aidan

> Congratulations Cory and ! My son Dylan is 10 mos and just

started his

> Starband 2 weeks ago. It's great to hear that you had so much

success with

> it, very encouraging to us! I know we have a long way to go

still. Did the

> time go by fast now that you look back on it? It seems to be going

so slow

> already.

>

> Beth

> Grand Rapids MI

>

>

> >From: " Cory Schwemley " <cory6@c...>

> >Reply-Plagiocephaly

> > " Plagiocephaly " <Plagiocephaly >

> >Subject: is a STARGrad!!!!

> >Date: Mon, 5 Apr 2004 12:58:33 -0500

> >

> > is officially a STARgrad now! He graduated from his STARband

today.

> >I am SO excited to be done but it is a little bittersweet. The

helmet just

> >became apart of who he is and now he just seems so OLD! LOL

> >

> >He went from 12mm to ~3mm, Bill said the measuring is not exact.

I am SO

> >happy we did the helmet when we did, he got great correction in

just a

> >little over 4 months. I do not regret putting him in the helmet

at all.

> >

> >Thanks to all of you for all the advice and the shoulder to lean

on when I

> >needed it! I will stay around awhile... ;-)

> >

> >Cory, mom to (6/5/03-10 months today!)

> >STARgrad 11/26/03-4/5/03, in OK

>

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