Hello Jorge I am Mia's grandma (Dawn's mother). I am so sorry to hear about Yamila's accident. You are a wonderful father and Yamila is very strong. I am...
67
Jorge Romero
jorgeromero51
Sep 3, 2010 10:12 am
This is the last report after 3 weeks of the accident of Yamila, who is still in the hospital.  I’ll be in touch.  Thanks.  ...
68
Jorge Romero
jorgeromero51
Sep 8, 2010 4:51 am
On Monday 6, Yamila came back home after 24 days. She will need to take a special formula overnight for 14 hours, every day.  On Tuesday we’ve been busy...
69
Jorge Romero
jorgeromero51
Sep 9, 2010 7:33 am
After her infusion, (Wednesday 5 pm) she wanted a new look for her first day of the school. So we went to the mall for a hair cut. She was happy. Â But when...
70
Jorge Romero
jorgeromero51
Nov 16, 2010 5:53 am
Dear Dr. Alfred Slonim: It was good to see you again. We are very greatful for your help in the recovery of my daughter. ...
71
Jorge Romero
jorgeromero51
Dec 10, 2010 7:35 am
On the second week of October, we knew the result of the MRI. http://video.yahoo.com/watch/8654303/23435312 On Monday, December 6, was taken exams to the...
72
Jorge Romero
jorgeromero51
Dec 16, 2010 1:46 pm
Since Monday 13, we area ready for the next step in the Pompe disease, the G tube. http://video.yahoo.com/watch/8674204/23517860 Since Monday 13, we area...
73
Jorge Romero
jorgeromero51
Jan 12, 2011 5:08 am
It was postponed the surgery (scheduled for today) to place the G tube, to replace her port for Myozyme and to take a biopsy. Â The nurses are trying to fit...
74
catherine dibiase
catmd1@...
Jan 12, 2011 2:42 pm
Jorge and Family I will pray for Yamila to have her surgery soon and for a speedy recovery. I hope you all take a much needed and deserved vacation. Sincerely ...
75
catherine dibiase
catmd1@...
Jan 12, 2011 2:43 pm
To: pompediseasefamily@yahoogroups.com From: catmd1@... Date: Wed, 12 Jan 2011 09:42:15 -0500 Subject: RE: [pompediseasefamily] Yamila update Jorge and...
76
Jorge Romero
jorgeromero51
Jan 21, 2011 3:49 pm
The surgery to replace her port, place a G – tube and the biopsy was performed yesterday Thursday 20, afternoon, for more than 3 hours. The pain and the...
77
catherine dibiase
catmd1@...
Jan 21, 2011 4:04 pm
Dear Jorge~ Thank you for the update. We pray for a speedy recovery for Yamila. You are an amazing Dad and we pray for your strength. Everyone, please do...
78
Jorge Romero
jorgeromero51
Jan 22, 2011 12:17 pm
Friday 21, at 2:00 pm the left lung almost wasn't working. The treatment was help her with breathig equipment. She was sedated and spent the night with oxygen....
79
catherine dibiase
catmd1@...
Jan 22, 2011 3:30 pm
Jorge, I will say a novena for Yami and your family~ ... Yami and heal her through you son Jesus Christ, Amen. Everyone please join me in prayer for Yami. ...
80
Jorge Romero
jorgeromero51
Jan 23, 2011 2:27 pm
Saturday 22, 5:00 pm, it took place a tube directly to the lungs because the oxygen mask from his body swelled. Also had fever. This with antibiotics, ...
81
Jorge Romero
jorgeromero51
Jan 26, 2011 4:45 pm
On Tuesday 25, the doctors identified the bacteria that was causing the lung infection.  In the afternoon they wanted to do a bronchoscopy to look inside...
82
catherine dibiase
catmd1@...
Jan 26, 2011 9:36 pm
That is very good news. Yami is is excellent hands. Thank you so much for letting us know. I will continue to pray for her recovery and for the strength of...
83
Jorge Romero
jorgeromero51
Feb 3, 2011 5:22 pm
Before the surgery, she was dancing. Â Today, fourteen days after the surgery, she can't hold her legs by herself. And, of course, she can't walk or even...
84
catherine dibiase
catmd1@...
Feb 4, 2011 1:29 pm
Hello Jorge~ You keep fighting to get Yami the phsical therapy she needs. Bless you and your wife for your constant attention to your daughter and her needs....
85
Jorge Romero
jorgeromero51
Feb 7, 2011 1:22 pm
Thank God she is home, again. Gracias a Dios, en casa nuevamente....
86
Dawn Hanley
miasmama6
Feb 8, 2011 12:21 am
Yay, Yamilla! To: aracely.romero@... From: jorgeromero51@... Date: Mon, 7 Feb 2011 05:22:34 -0800 Subject: [pompediseasefamily] Home again [1...
87
Jorge Romero
jorgromero51@...
Jan 17, 2012 9:15 pm
Last week, we saw Dr. John Delahay in Kiwanis Orthopedic Clinic who recommended surgery to correct her foot position. The doctor thinks thatshe’ll walk ...
88
Jeffrey Schubert
jefferyschub...
Jan 17, 2012 11:01 pm
Thanks for sharing. I hope that Yami does well. I think she is walking very well. Good luck with the surgery. ... From: Jorge Romero...
89
suchen tsai
suchenhutsai
Jan 18, 2012 6:29 am
Hi Jorge, Â May I ask why you move a lot? for your job or for Yami? Â Harry's mom ________________________________ From: Jeffrey Schubert...
90
Jorge Romero
jorgeromero51@...
Jan 31, 2012 10:33 am
A normal Pompe weekdays http://youtu.be/qcQSn4PXEXQ Monday 23. Day of infusion. NEWS Myozyme is not longer produced after March 31. All children will receive...
91
Jorge Romero
jorgromero51@...
Feb 20, 2012 5:30 pm
Hi Suchen Tsai: The reason that we move a lot it's because we have to deal with insurance issues; and mainly we ask for help to the Doctors that are interested...
92
Jorge Romero
jorgeromero51
Feb 28, 2012 3:55 pm
It's a good news for our families. http://www.sunherald.com/2012/02/27/3779124/angiochem-forms-collaboration.html#storylink=misearch It's a good news for our...
93
Jorge Romero
jorgeromero51
Apr 9, 2012 6:35 am
Yamila is growing and showing improvements in her condition. Here in a recent concert in her school. Â ...
94
Dawn Hanley
miasmama6
Apr 9, 2012 5:30 pm
This is awesome. What a beautiful personality. Mia is so shy, I cannot imagine her ever that outgoing, lol. To: jorgeromero51@... From:...
95
Jorge Romero
jorgeromero51
Apr 11, 2012 4:13 pm
Yesterday, the second girl that received for the first time Lumizyme, also presented reactions, although less severe than my daughter. Â She got nauseas and...
