Update on Jay - pipTalk Forums

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Kethry
Member Rara Avis

since 2000-07-29

Posts 9082
Victoria Australia

0 posted 2003-09-18 05:17 PM

Dear all,
I know it's been a while. Nothing much has changed. Jay is still having what are called gelastic seizures (laughing seizures). We are looking at the end of October before anything can be done and at this stage he and his mum April will have to move back to Victoria to have the surgery (I am SOOOO unhappy about that *wink). In the meantime I have decided to quit my job so I can spend more time supporting her. I will update you when I know more.

Thanks for the notes of encouragement and your prayers.

Keth

Here in the midst of my lonely abyss, a single joy I find...your presence in my mind. Unknown

Sunshine

Administrator

Member Empyrean

since 1999-06-25

Posts 63354
Listening to every heart

1 posted 2003-09-18 06:38 PM

Will your employer just let you take a family leave of absence, Keth? I know your priorities are straight, and I don't know how much you need, or desire, to work when they return home, just a thought.

But like I say, your priorities ARE in order. God and Family first. And God IS watching over you. My prayers continue for all of you...

Larry C

Member Patricius

since 2001-09-10

Posts 10286
United States

2 posted 2003-09-18 07:10 PM

Keth,
I like Karilea's idea. Hang in there and I pray all goes well for each of you.

nakdthoughts
Member Laureate

since 2000-10-29

Posts 19200
Between the Lines

3 posted 2003-09-18 09:14 PM

I am sorry to hear that nothing has improved for Jay, Keth...but I am happy you will have them close now.

hugsss..thinking of you always
M

suthern

Member Seraphic

since 1999-07-29

Posts 20723
Louisiana

4 posted 2003-09-19 08:55 AM

Always in my thoughts and prayers, dear friend... just remember to take care of YOU, too... please? *S*

Marge Tindal

Member Empyrean

since 1999-11-06

Posts 42384
Florida's Foreverly Shores

5 posted 2003-09-19 09:26 AM

DarlingKethry~
Never out of my thoughts or my prayers~
Hoping that October hurries and little Jay gets the exacting care that he needs~

Having them close will be a blessing in so many ways, dear lady~
Hopefully the job thing can be worked out as to what is best for you all~

Love you~
*Huglets*
~*Marge*~

~*When the heart grieves over what it has lost,
the spirit rejoices over what it has left.
- Sufi epigram
[email protected]

Earth Angel
Member Empyrean

since 2002-08-27

Posts 40215
Realms of Light

6 posted 2003-09-19 10:22 AM

Thanks for the up-date. You are such a loving protector of your family. I am at least thankful that Jay's condition has not worsened. He has prayers being sent up for him from all around the world.

Love & healing Light,
Linda

Midnitesun

Member Empyrean

since 2001-05-18

Posts 28647
Gaia

7 posted 2003-09-19 10:33 AM

Hang in there, and know that you have many hearts beating alongside.

Trillium

Member Patricius

since 2001-03-09

Posts 12098
Idaho, USA

8 posted 2003-09-19 01:32 PM

Kethry: Still saying prayers for you and your family. May God bless you all!

Betty Lou Hebert

Mistletoe Angel

Member Empyrean

since 2000-12-17

Posts 32816
Portland, Oregon

9 posted 2003-09-19 01:50 PM

(big hugggsssssss) Oh Kethry, I'm so sorry to hear this, dearest friend, I too had gelastic seizures myself as a child every evening, and had nightmares mixed with them, and I felt they would never end. Then, finally, we went to the hospital to get me checked out and they put me on something called Tegretol, which tastes almost like a Orange Julius, and now I've been off that medication for six years but I have no more gelastic seizures! (big angel hugs) Perhaps you can ask your doctor about Tegretol or other medications similar to that, God Bless You and know we are all sending angel comfort hugs and prayers to your Jay, we all love you so much! You have such a beautiful heart, sweet Kethry, thank you for sharing!

May love and light always shine upon you!

Love,
Noah Eaton

I don't need no proof when it comes to God and truth
I can see the sun set and I perceive

***Live***

[This message has been edited by Mistletoe Angel (09-19-2003 01:51 PM).]

Kethry
Member Rara Avis

since 2000-07-29

Posts 9082
Victoria Australia

10 posted 2003-09-19 04:24 PM

Noah,
Thanks for the advice, My son had Tegretol for a while. Jay has been on Epilum as the doctor did not believe Tegretol would work given that the seizures are caused by a hypothalmic hamartoma (benign tumor)* My I learned a lot of new words.
However the Epilum also is not working and they have beguin to try him on Lamictal, which has lamotrigine in it. We don't know how he will go because the drug is fairly new and there are supposedly a lot of side effects. Anyway I'm hanging in there, looking after myself and doing all the right things to make sure I'm on deck for when April comes across. I think if I'm going to fall apart it will be afterwards, soooo... if anyone wants to hang around with waiting arms then I might need catching before I fall all the way down. *grin

As for the job thing...I think its time anyway.
Keth

Here in the midst of my lonely abyss, a single joy I find...your presence in my mind. Unknown

Charisma

Member Ascendant

since 2000-09-30

Posts 5906
lost in blue pages

11 posted 2003-09-20 10:22 AM

((warm hugs)))
prayers for you and your family.

Charisma

NewEnglandlazurlu
Member Rara Avis

since 2002-01-04

Posts 7470
A Mountain Paradise

12 posted 2003-09-20 11:37 AM

Kethry, I continue to keep you all and especially little Jay in my thoughts and prayers.

Try to remain optimistic and hopeful for the best outcome and you know you can count on all of us here to keep the prayer vigil going.

Hugs and luvs, Marti

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