I had the pleasure of meeting Reuben's wonderful mom and dad at the CHARGE conference. They have been readers of Max's blog and enthusiastically came up to me and said "you must be Amy and Mighty Max!"
We heard from them and several other new parents (of babies with CHARGE) that Max's story was an inspiration and has helped reassure them of the future. How encouraging for us to hear that!!! Thank you everyone for sharing that...it was so amazing to feel that we have helped others along this journey! :)
Reuben's family particularly stood out to us because here they were at the conference and their baby was so young and in the hospital. The parents lived near the conference, and they didn't want to miss such a valuable opportunity. I thought it was so strong and amazing of them to be able to do that. I know I wasn't ready in those first few months after the diagnosis. I was very much in the "anger/sad/frustrated/scared out of my mind" stage.
Since our return from the conference, we have learned that Reuben and his family are having a very difficult time in the hospital. It has traumatized much of the CHARGE community. He needs heart surgery but also is having a difficult time being extubated from another surgery. The cardiologist apparently refused to even meet Reuben and denied the surgery because of the diagnosis and his prognosis for the future...."we can't tell whether he'll have the mental age of 2m at 16 yrs." Can you imagine??? So basically they were told nothing can be done for sweet Reuben. (Since then, they have talked with other medical professionals and are hoping to work out a solution.)
Reuben's heart condition isn't any more complicated than Maxwell's was! It sounds just about the same actually. Plus Max was much more medically fragile with other issues. The thought of someone telling me they wouldn't operate on Maxwell...wow, it's too much to even comprehend. I was playing with Maxwell yesterday and just kept thinking, "how could anyone ever deny someone this magical?" His spirit, playfulness, and absolutely adorable personality is the most incredible blessing I could ever imagine!
So we definitely need prayers BIG TIME for sweet Reuben, his loving parents and his medical team. He has throat surgery scheduled for Thursday and then they will go from there. To learn more about this precious lil' boy and his journey, visit their blog: http://reubenjackdodd.blogspot.com/.
Thank you everyone! Your prayers have proved to be miraculous for many. Thank you for bringing such comfort and encouragement to Maxwell's circle of precious friends.
1 comment:
i ask my self often how drs can do such and such a thing and i ask it now HOW CAN THEY JUST TELL ME lisa mite have a point whe she says they tell us the worst so we no watis acutaly out there yes but they r so sutpid so tactless ive heard drs propose death to other patients infornot of us like i could hear their every word if soemone is dying they ota get the fam into another room and tell them but noooooooooo
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