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Sacha

It's been a while

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Hi guys,

 

It''s been a long while since I have been on here. Katie fell very ill in January of this year and ended up having a nasal gastric tube as her oesophagus was not working proprly. It had become dialated and her muscles weren't working properly.

 

After 10 weeks, she had the feeding tube out last Monday and after an increase in her methotrexate and prolonged steroids she is finely showing great improvement! I am actually getting my daughter back!

 

I know that we have to take it day by day but she is now eating most foods and her energy levels are fantastic!

 

I just wanted to share my news.

 

Sacha

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Sacha, it is very hard when our children are ill. With this disease it sometimes becomes unbearable. I am glad your daughter is doing much better. Please keep us informed on her well being. Others with children with this illness like to stay up to date and informed on what is going on with other children. Happy news.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Sacha,

 

What excellent news about your daughter, Katie; I'm so pleased to hear it!

 

It must be such a relief for you to know that things are gradually improving for her. :great:

 

Please do keep us updated on how she's getting on.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Sacha

 

I too am glad to hear she is doing so much better, that's such terrific news!


Sending good wishes your way!

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Hi Sacha ,

 

I took a deep breath on reading about Katie. I am glad to hear that she's doing better. :VeryHappy: My own son was diagnosed, at age 18, with the esophageal dismotility, but hasn't had to have a feeding tube. Please continue to keep us up to date on her health.

 

Take care, Everyone.

Margaret

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Sacha, that is just great news. I hope she continues to improve in all areas. Are you taking care of yourself too?

 

Here's a couple of big hugs for you and Katie and my very best wishes. :emoticon-hug: :emoticon-hug:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Sacha!

 

I am so happy you shared this good news with us! :emoticons-group-hug: We ALWAYS love to read when things are working well for one of our own!

 

Please give Katie a Very Special :emoticon-hug: from all of us...and then ask if she would do the same back to you :thank-you-2:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thankyou for all your best wishes. This site always gives me a warm glow. I'm lucky in the fact that Katie is upbeat and tends to take everything in her stride. But for me as a parent I just tend to hide away as I have done until everything is better.

 

Katie is having some more tests done in May to check out her oesophagus and how the muscles are working. Also checking the nerves as well. They told me when she fell ill in Jan that they had never seen an oesophagus like this in Scleroderma ( that might just be in a child). This comment didn't fill me with much hope but Katie is testament to the fact that things can get better.

 

Sacha.x

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Sacha,

 

So glad Katie is doing better!! It's so hard when your child is suffering

from such a horrible illness! :emoticons-line-dance:

:emoticons-group-hug:

 

Hope you are taking care of yourself also! HUGS

 

susieq40

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Sacha, Katie obviously has GREAT will and that is quite excellent when dealing with what she/we do.

 

As for you, you deserve a great deal for your loving support of Katie!

 

Please keep us posted as to how her tests (in May)...go.

 

In the meantime, here are some loving :emoticon-hug: for you both.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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