Just checking in

[Sara's Mom]

You guys know just what to say to make me feel better! Thanks again for all the support. Sara seems to be doing well now, just pretty noisy when she sleeps.

Her next surgery is scheduled for Friday 8/26. I don't think I'll get much sleep until then. I can't quit watching her sleep.

A friend donated another Delta ticket to us so Mike can come see her again. Sara said she wants him here when she's not in the hospital, so he's coming over Labor Day weekend. She's making all sorts of plans for the two of them. She is really sick of me!!!

I talked to the airway nurse again and she told me she really wants to get Sara eating with the stent. So, hopefully, we won't have to worry about the NG tube.

Something kind of funny...I thought Sara would lose a few pounds here. She started out at 26.5 lbs when we got here and now weighs 28 lbs. She has never gained so much weight so fast...We need to go buy new pull ups. I'm sure it's the Decadron, but still kind of funny.

I am feeling pretty disappointed and scared right now, but its hard to feel too sorry for yourself in the Ronald McDonald House. I've met many parents who have been living here a year or more. One mom was so upset the other night, because she missed her other son's first day of Kindergarten and he didn't want to talk to her on the phone. She's been here 9 months waiting for a heart transplant for her baby.

I will check in again soon. I tried to get on last night, but think the site was down for awhile.

Talk to you all soon! Sorry for the book. I think I'm starting to get a bit loopy here!

Erin

[babyhugger]

Hang in there Erin,

You and Sara can do it! You both will be in my thoughts and prayers over the coming weeks.

Blessings,

Dawna

[sandra]

I'm glad to hear from you. I wish we could take the worry away. You have had more than your fair share of stress lately.

Hugs, Sandra

[Zoe's Mom]

Glad to hear from you! I'm sorry you guys are stuck for so long-we were at RMH for a while too and had the same experience with other families. I'm sending good vibes to you guys! Keep us posted!
Hugs,
Lora http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[Whitney]

Erin

I hope everything goes well for her next surgery. Please know we are thinking of you. I am glad Mike gets to come visit. Hugs to you and Sara.

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

Whitney

[McKenna&clan]

Erin,
My heart just goes out to you...what a harrowing experience! It's like you would almost rather have the trach back than worry night and day about her airway. I just gotta give you a big virtual hug!
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif {{{{{{HUG}}}}}} http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
I'm glad Mike is coming out...I'm sure you need him as much as Sara does. I don't think I would do as well as you doing that all alone. You are such an amazing woman...I know what you are going to say...you have no other choice. But the way you have chosen to do this...with a positive attitude and a stiff upper lip...KUDOS to you!
Give sweet Sara a love from us.
Janet & McKenna.

[Jacob's Mom]

Hey Erin, So good to hear from you! You really have been through a lot lately. As usual, you are strong and wonderful. That will be great to have Mike there for a few days - you and Sara both need it.

((((HUGS))))
Amanda

P.S. Keep your eye out for a little package http://www.tracheostomy.com/iB_html/non-cgi/emoticons/wink.gif

[Sara's Mom]

OK...guess I should point out, I'm not as strong as you all are thinking. Â*My mom is here with me! Â*I don't think I'd have made it this far without her here.

[T-bone]

Hi Erin, I am glad that your mom is there with you, and yes you are very strong. Little Sara is also a little trooper. I can't imagine those parents living at RMH for that long. My heart goes out to all of you. Wow. Good luck with surgery. Thankyou for keeping us posted. I am sending you lots of angels to help you through.
Teresa http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[JWorthington]

Hi Erin

Just to say we are thinking of you. I hate it when Sam is in the hospital, its very lonely and you spend your time talking to other parents whose children have other problems and that makes you more depressed! But try your best to keep sane, you've done so well to get this far. Update us when you can.

Love Julie

[butterfly]

Hello Erin, It is so good to hear from you, I am glad your husband is going to see you..... and is great your Mom still is with you, they are the perfect company, mine has been with me in those situations too. Keep us posted please, I think in Sara[s little beautifull face a lot, she is very expressive.
Lots of love PAOLA AND FERNANDA, the huggiest little girl of the world---

[christyw]

Erin - it's been so long, but I thought I'd check the board. Wow- Sara has been decannulated! But she's having trouble I guess, and is in the hospital?? I hope that everything is ok. She's such a bright and beautiful child - that was apparent just from the short time we spent around her at the last trach conference.

Gaithy is doing well. She's been off of CPAP for awhile, and sleeps wonderfully now. She was decanned back in Aug '04 if you recall. She used the CPAP for awhile, then was able to do without it. Then in March she had a T&A and needed CPAP for two weeks, but has been good after that. I never thought we'd get thru it all. I remember a post from you while we were going thru the CPAP saga - telling me you knew of another child that just needed it for a few months or something like that, and then was absolutely fine. That really gave me hope!

If you ever send out email updates or anything, please include me - clwortham@hotmail.com

Wishing your family well!

Christy (Gaithy's Mom)

P.S. Gaithy turned five years old the 18th! :-)