Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Kristy, Blessings and hugs coming your way. Kim L > > Keep the prayers goin'... on the 8th of December Kaleb's Neurologist > described Kaleb's brain as deseased. They don't know if it's not growing, > but it's not growing at a normal rate (right now) they won't know any more > until further scans are taken. But as of right now his brain isn't growing, > and is producing more blood/fluid on the brain, which the doctors don't know > definately where it came from (via the Neuroseureon). Kaleb's Neurologist > estimated that it could be the veins around his brain, in between his skull, > where is brain is not growing, and the rest of his body is, the veins burst > producing the fluid/blood. They did say his last scan look slightly better > than the scan done in October (his most recent scan was on Dec.1st. when we > had to take him to the ER for his seizures) His Neuorologist also informed > us that he sustained severe damage (this is all from or a product of, back > on May30th/June when he went into the hospital), and described Kaleb's brain > as a deseased brain. We don't know the prognosis as of yet, neither do the > doctors... and they are not saying that this is a terminal condition yet. > Only time will tell, as his Neurologist stated, it's in God's hands. > The Neurologist did state that Kaleb had sugnificant brain damage on the > right side (he also told us that he has brain damage through out his entire > brain, just like his entire body), but his seizures are coming from the left > side of the brain. So as of now they just want to keep taking scans to see > what Kaleb's brain will do on it's own, as far as production and growing. > His inner ventracles are also enlarged, due to the massive loss. So please > keep him in your prayers and thoughts. Someone enlightened me and made me > feel at peace with what happened. She said something to the effect, that > Kaleb has been such a fighter, he has given so much love as well as received > so much love, and now his spirit has become too big for his little body... > God is suffering from his loss too. But we are to love him, and make him as > happy as we can now, until the Lord calls him home! AMEN!! Since these > recent discoveries, and information given to us by his Neurologist, and his > Neurosurgeon, we have made a tough dissision to change his advance > directives. I felt for the logest time that by signing a DNR (Do Not > Resesitate) that I was signing Kaleb's life away... were really we're doing > it out of love. He was a totally different child before this past June, and > we had so many hopes and aspected him to grow and prosper just like any > other child. But now our hope has changed. We are praying now for Kaleb to > overcome these seizures and nerve damage (the Neurologist also said that > Kaleb had sugnificant nerve damage). We have been told by his doctors that > medcine's will not help him, and will not fix any of his problems. We are > to keep him as comfortable and happy as we can now. Like I said, this > hasn't been diagnosed as a terminal condition, so we still have hope. But > at the same time we don't want Kaleb to suffer any further, and so forth. > So this is how things are, they want to wait six months to get another cat > scan (which will be in January), and then I guess we'll know more than. We > are getting a second opinion, we're taking him to Kennedy Kreiger this > coming up year (January). For now his pulmanary status (lungs) is > excellent!! He loves looking at the Christmas lights, but he sure does hat > sitting up!!! > God Bless and keep you well ~ > Love through Christ ~ > ~ Kristy > > _________________________________________________________________ > Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Kristy, Kaleb and the entire family are in my prayers. I can't even imagin what you are going through but my thoughts are with you. Seems like your faith is sustaining you. That's a good thing. Prayers, Blessings and Hugs, Lynn Update-Kaleb Keep the prayers goin'... on the 8th of December Kaleb's Neurologist described Kaleb's brain as deseased. They don't know if it's not growing, but it's not growing at a normal rate (right now) they won't know any more until further scans are taken. But as of right now his brain isn't growing, and is producing more blood/fluid on the brain, which the doctors don't know definately where it came from (via the Neuroseureon). Kaleb's Neurologist estimated that it could be the veins around his brain, in between his skull, where is brain is not growing, and the rest of his body is, the veins burst producing the fluid/blood. They did say his last scan look slightly better than the scan done in October (his most recent scan was on Dec.1st. when we had to take him to the ER for his seizures) His Neuorologist also informed us that he sustained severe damage (this is all from or a product of, back on May30th/June when he went into the hospital), and described Kaleb's brain as a deseased brain. We don't know the prognosis as of yet, neither do the doctors... and they are not saying that this is a terminal condition yet. Only time will tell, as his Neurologist stated, it's in God's hands. The Neurologist did state that Kaleb had sugnificant brain damage on the right side (he also told us that he has brain damage through out his entire brain, just like his entire body), but his seizures are coming from the left side of the brain. So as of now they just want to keep taking scans to see what Kaleb's brain will do on it's own, as far as production and growing. His inner ventracles are also enlarged, due to the massive loss. So please keep him in your prayers and thoughts. Someone enlightened me and made me feel at peace with what happened. She said something to the effect, that Kaleb has been such a fighter, he has given so much love as well as received so much love, and now his spirit has become too big for his little body... God is suffering from his loss too. But we are to love him, and make him as happy as we can now, until the Lord calls him home! AMEN!! Since these recent discoveries, and information given to us by his Neurologist, and his Neurosurgeon, we have made a tough dissision to change his advance directives. I felt for the logest time that by signing a DNR (Do Not Resesitate) that I was signing Kaleb's life away... were really we're doing it out of love. He was a totally different child before this past June, and we had so many hopes and aspected him to grow and prosper just like any other child. But now our hope has changed. We are praying now for Kaleb to overcome these seizures and nerve damage (the Neurologist also said that Kaleb had sugnificant nerve damage). We have been told by his doctors that medcine's will not help him, and will not fix any of his problems. We are to keep him as comfortable and happy as we can now. Like I said, this hasn't been diagnosed as a terminal condition, so we still have hope. But at the same time we don't want Kaleb to suffer any further, and so forth. So this is how things are, they want to wait six months to get another cat scan (which will be in January), and then I guess we'll know more than. We are getting a second opinion, we're taking him to Kennedy Kreiger this coming up year (January). For now his pulmanary status (lungs) is excellent!! He loves looking at the Christmas lights, but he sure does hat sitting up!!! God Bless and keep you well ~ Love through Christ ~ ~ Kristy _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Kristy, My thoughts and prayers are with you, Kaleb and your familiy. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Kristy, My thoughts and prayers are with you and Kaleb and these difficult, but loving decisions you are having to make. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Kristy- What an incredibly difficult time for your family. It sounds like your faith has given you a way to cope. I will keep Kaleb and all of you in my thoughts and prayers. Michele W Aubrie's mom 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Kristy, I'll be thinking about you and praying for you and Kaleb. much love, Mark > Keep the prayers goin'... on the 8th of December Kaleb's Neurologist > described Kaleb's brain as deseased. They don't know if it's not growing, > but it's not growing at a normal rate (right now) they won't know any more > until further scans are taken. But as of right now his brain isn't growing, > and is producing more blood/fluid on the brain, which the doctors don't know > definately where it came from (via the Neuroseureon). Kaleb's Neurologist > estimated that it could be the veins around his brain, in between his skull, > where is brain is not growing, and the rest of his body is, the veins burst > producing the fluid/blood. They did say his last scan look slightly better > than the scan done in October (his most recent scan was on Dec.1st. when we > had to take him to the ER for his seizures) His Neuorologist also informed > us that he sustained severe damage (this is all from or a product of, back > on May30th/June when he went into the hospital), and described Kaleb's brain > as a deseased brain. We don't know the prognosis as of yet, neither do the > doctors... and they are not saying that this is a terminal condition yet. > Only time will tell, as his Neurologist stated, it's in God's hands. > The Neurologist did state that Kaleb had sugnificant brain damage on the > right side (he also told us that he has brain damage through out his entire > brain, just like his entire body), but his seizures are coming from the left > side of the brain. So as of now they just want to keep taking scans to see > what Kaleb's brain will do on it's own, as far as production and growing. > His inner ventracles are also enlarged, due to the massive loss. So please > keep him in your prayers and thoughts. Someone enlightened me and made me > feel at peace with what happened. She said something to the effect, that > Kaleb has been such a fighter, he has given so much love as well as received > so much love, and now his spirit has become too big for his little body... > God is suffering from his loss too. But we are to love him, and make him as > happy as we can now, until the Lord calls him home! AMEN!! Since these > recent discoveries, and information given to us by his Neurologist, and his > Neurosurgeon, we have made a tough dissision to change his advance > directives. I felt for the logest time that by signing a DNR (Do Not > Resesitate) that I was signing Kaleb's life away... were really we're doing > it out of love. He was a totally different child before this past June, and > we had so many hopes and aspected him to grow and prosper just like any > other child. But now our hope has changed. We are praying now for Kaleb to > overcome these seizures and nerve damage (the Neurologist also said that > Kaleb had sugnificant nerve damage). We have been told by his doctors that > medcine's will not help him, and will not fix any of his problems. We are > to keep him as comfortable and happy as we can now. Like I said, this > hasn't been diagnosed as a terminal condition, so we still have hope. But > at the same time we don't want Kaleb to suffer any further, and so forth. > So this is how things are, they want to wait six months to get another cat > scan (which will be in January), and then I guess we'll know more than. We > are getting a second opinion, we're taking him to Kennedy Kreiger this > coming up year (January). For now his pulmanary status (lungs) is > excellent!! He loves looking at the Christmas lights, but he sure does hat > sitting up!!! > God Bless and keep you well ~ > Love through Christ ~ > ~ Kristy > > _________________________________________________________________ > Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Kristy, I just don't know what to say except please know you and Kaleb are in my prayers. Please keep up updated if you can. Bonnie Quote Link to comment Share on other sites More sharing options...
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