When Grace was born we were told to put her in an institution and let her die. We decided to take her home and give her the best life we could . She is 33...
  A friend sent this to me and I hope it doesn't offend anyone. But this is how my Grace is . She is a gift and knows love so much more than hate soem days...
Hi Everyone, still having trouble opening the MP4 file, and was wondering if anyone else had it saved as something else that they could email it to me? Thanks...
We were released on Dec.1st, after 13 days in with viral pneumonia. Now we are back in again!!! She started running a fever of 101.6F (her "normal" temp. is...
Erin, I have SO been where your at. Stressful is not the word I would use though...more like beaten down. Vent all you want. I know your probably tired of...
Erin, Is there a Ronald McDonald house in your area? If so GO THERE! They offer food for free, a bed to sleep in, shower and laundry room. They do charge...
I am so sorry for all your going threw. When Grace had her colon infection her counts were near normal.Something about the body making more to fight what...
Erin, My name is Annette Mucker I am Joshua's mom. He is a 11q+ and I would like to email you off the yahoo groups if you would not mind. My email is...
Hi Erin - I wish I was closer to Missouri so I could come give you a few hours break now and then. My son Erik is also a red head - and gets very pale when...
Sherry, Hello there. Thanks for emailing. Ohh my word...the ear piercing scream is right....Serena does that one when there's really something going on. If...
Just checking to see if anyone knew how she was doing. Praying for her and Erin. I have contacted some people who should be able to help them with the gas bill...
Erin, Sorry to hear about Serena's continued bout with pneumonia. Faith, Jana, and I will continue praying for you all. Stay strong! I wouldn't think...
Hi Erin - Erik is 22 years old. When he was born and 11q- syndrome was diagnosed, the literature I could find was very brief and distressful; I was convinced...
Hi Peggy - I've noticed that the e-mails from/to this group sometimes take 2-3 days to go through. I got a bunch of e-mails regarding Serena this morning at...
Iwas so lucky to have a dr that said as parents we were the ones with them 24 hours a day and knew what was going on. If you don't get what you want demand...
I HAVE SOME INFO FOR YOU Â IF YOU ARE ALREADY A CLIENT OF ST LOUIS REGIONAL OFFICE FORÂ THE DISABLED CALL KELLY BUTLER IF YOU ARE NOTÂ CONTACT KEITH...
I am not sure why it takes so long for some emails to come threw. I know another group I belong to the emails have to be approved before being posted. . Bless...
Serena's heart test came back normal. So that does most likely mean that she has the Hypoventalation. Not good. So on Friday we're having a long term care plan...
I am glad your are getting some response from someone. I also put your name in for help on your gas bill If they don't contac tyou let me know and I will give...
The meeting today was a grueling one at best. And like I thought not much new was discussed. The doctor here still feels like it is most likely Centeral...
Hi Erin - In spite of her difficulties, Serena will always benefit from the socialization that programs away from home offer. Out-of-the home programs are good...
I am so sorry they are giving you such a hard time. I found when dr's didn't know what to do they blamed it on the disorder..If it is the shunt then it...
Sherry, Thank you for your email. I agree that having Serena at home some and at an out of home facility too (like the specialized day care she goes to) is...
Just wanted to wish everyone a happy holiday. I just wanted to remind everyone that wanted bracelets that I am now taking payments for them. They are $2 each....
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