Post by rob on Mar 3, 2012 20:56:28 GMT -5
Happy to have found a forum created for info/networking on AgCC.
We have a 14 mos old (DOB: 12/23/10) daughter who was diagnosed enutero w/trisomy 8 at approx 3-4 mos & then @ 6/7 mos inutero we got the full/complete AgCC diagnoses. Both diagnoses were confirmed at 6 mos of age via MRI brain scan.
Alisa was born @ 4lbs 15oz & spent her 1st 16 days in the infant ICU as she had trouble at 1st w/her sucking motion & thus had to have a feeding tube put in through her nose. After approx 1 week w/the feedingf tube she had progressed well enough to where once it fell out on its' own there was no need to have another one re-inserted. During her 8th night in the ICU as we were preparing to bring her home w/in a day or 2 she experienced 2 bouts of sleep apnea during 1 sleep cycle so they wanted to keep her in te ICU under close watch for another week to make sure it didn't occur again, otherwise they were going to transport her over to UCSF (San Franciso...we live approx 30 mins east of SF) for further/more indepth observation. Thankfully she did not experience another bout of apnea over the next week & was thus discharged after 16 days in the ICU post birth.
Alisa has been quite healthy ever since (now 14 mos) & has maybe had a minor case of the sniffles no more than two times now. We have P/T appts once/week as well as weekly in home O/T visits which she seems to be responding quite well to.
Alisa's Neurologist is Dr. Elliott Sherr @ UCSF (who we highly reccommend) where she's also a participant in his ongoing AgCC study.
If there's anyone out there who wants to get in touch w/us to further network & share experiences by all means please do. I can be reached @ rob@rescuefinder.org.....which is my animal welfare portal that I haven't been able to spend much time developing/working on these days.
AgCC sure is rare enough but then add Trisomy 8 into the mix & I think it's safe to say that we'll be hard pressed to ever be able to find someone/family else w/the same or similar diagnoses. However I figure this site will provide us w/a great opp to network w/other families & caregiver's who're faced w/caring for these specific cognetive challenges, whether it be AgCC & or all the various Trisomy's, 8, 13, etc.
All the best to everyone!!
Rob
We have a 14 mos old (DOB: 12/23/10) daughter who was diagnosed enutero w/trisomy 8 at approx 3-4 mos & then @ 6/7 mos inutero we got the full/complete AgCC diagnoses. Both diagnoses were confirmed at 6 mos of age via MRI brain scan.
Alisa was born @ 4lbs 15oz & spent her 1st 16 days in the infant ICU as she had trouble at 1st w/her sucking motion & thus had to have a feeding tube put in through her nose. After approx 1 week w/the feedingf tube she had progressed well enough to where once it fell out on its' own there was no need to have another one re-inserted. During her 8th night in the ICU as we were preparing to bring her home w/in a day or 2 she experienced 2 bouts of sleep apnea during 1 sleep cycle so they wanted to keep her in te ICU under close watch for another week to make sure it didn't occur again, otherwise they were going to transport her over to UCSF (San Franciso...we live approx 30 mins east of SF) for further/more indepth observation. Thankfully she did not experience another bout of apnea over the next week & was thus discharged after 16 days in the ICU post birth.
Alisa has been quite healthy ever since (now 14 mos) & has maybe had a minor case of the sniffles no more than two times now. We have P/T appts once/week as well as weekly in home O/T visits which she seems to be responding quite well to.
Alisa's Neurologist is Dr. Elliott Sherr @ UCSF (who we highly reccommend) where she's also a participant in his ongoing AgCC study.
If there's anyone out there who wants to get in touch w/us to further network & share experiences by all means please do. I can be reached @ rob@rescuefinder.org.....which is my animal welfare portal that I haven't been able to spend much time developing/working on these days.
AgCC sure is rare enough but then add Trisomy 8 into the mix & I think it's safe to say that we'll be hard pressed to ever be able to find someone/family else w/the same or similar diagnoses. However I figure this site will provide us w/a great opp to network w/other families & caregiver's who're faced w/caring for these specific cognetive challenges, whether it be AgCC & or all the various Trisomy's, 8, 13, etc.
All the best to everyone!!
Rob