CHD WARRIORS / STROKE SURVIVORS

List: CHD WARRIORS/STROKE SURVIVORS:


I am happy to say, that I have made contact with other families who are willing to share their info. on this blog! I really think we can learn from each other, and support each other!
If anyone is interested in being added to the list... please let me know!


1. Charlie Grauber Jr. (Age: 2yrs. old )
CHD - HRHS, DILV / STROKE SURVIVOR
Mom of Charlie: Senalda Grauber (facebook)
Childrens Hospital of Philadelphia, PA.
Carepage: https://www.carepages.com/carepages/BabyCharlieGrauberJr
February 21 at 3:11pm.: By all means share Charlies information... I think that's a great idea... I remember what it felt like to be in this all alone... If it helps another family I'm all for it. Let me know if there's anything I can help with. Oh P.S. Huge heart hugs for starting the blog to support other heart families and expanding ours.



2. Noah Nero (2yrs.old )
CHD-HLHS / STROKE SURVIVOR
Mom of Noah: Cherish Nero (facebook)
All Childrens Hospital St. Petersburg, FL
Carepage: https://www.carepages.com/carepages/NoahsQuest
February 21 at 4:56pm.: His strokes are not something we really think much about anymore. They both happened within his first month of life. He spent so much time in the hospital for his first 18 months that we never knew if his delays/issues were stroke related or from being in the hospital. There was a time when he could not move the right side of his body. It is still not as strong as the left, but you would never really notice unless you sat in a therapy session with him. As a result of his strokes he has two brain infarcts - one on the left side and one on the right. In a way, I think we are very fortunate that they happened so early in his life. His body has compensated well for the infarcts. He is still remarkably delayed - but again...it's hard to tell if that is a result of extended life in the hospital or his brain. But feel free to post anything about him that may be helpful to other parents!



3. Jilliann Rose Kimble (Age: 3yrs. old )
CHD - HLHS, Double Outlet Right Ventricle, and Mitral Atresia varient / STROKE SURVIVOR
Carepage: https://www.carepages.com/carepages/SILLYJILLY07
Mom of Jilly:
Joy Proper Kimble (facebook)
Horseheads, NY /Childrens Hospital of Philadelphia, PA
blog: http://join-for-jilly.blogspot.com/


4. Susan Faith Jenness (Age: 2yrs. old )
CHD - double inlet single ventricle complex with ventricular inversion, hypoplastic left ventricle, transposition of the great arteries (TGA), ASD, remote VSD, severe aortic stenosis with a coarchtation of the aorta, and right aortic arch. / STROKE SURVIVOR
Mom of Susan: CandiceBayJenness (facebook)
Duluth, GA
Carepage: https://www.carepages.com/carepages/SusanFaiththeLittleMiracle







5. Bryton Maxim (Age: 16yrs. old )
CHD -transposition of the greater arteries, heart transplant/ STROKE SURVIVOR
Mom to Bryton: Terri Maxim
Children's Hospital Boston
Carepage: https://www.carepages.com/carepages/brytonmaxim
Posted Feb. 19, 2010 : After Bryton's heart transplant, he had a stroke. Actually, the transplant team believes that he may have had a smaller stroke just prior to the transplant while he was on the mechanical heart. I would love to be on the list. Bryton is doing so much better these days. He will never completely regain what he lost and that is so sad. It will be good to connect with others who have the same experience. Thanks for putting that out there for us.




6. Teri Benson (Age: 29yrs. old)
(CHD/STROKE SURVIVOR)
Elk Grove, CA
carepage being created, will update when complete
facebook: Teri Benson
e-mail: minnieweasel@gmail.com
February 22 at 12:20pm.: Hey Joy, Such a fantastic idea!!! You can definitely share my info with others. I remember how lost and alone I felt after I had my first stroke. If my story can make help one person feel less alone, it's worth it! Feel free to share any of my info.



7. Josie Ball (Age: 4 1/2 yrs. old)
(CHD / 2X STROKE SURVIVOR )
Mom to Josie: Melissa Martin Ball (facebook)
Danville, IL
Carepage: https://www.carepages.com/carepages/JosieBall




8. Owen Veloso (Age: 1 1/2 yrs. old)
CHD - HLHS / STROKE SURVIVOR
Mom to Owen: Laura Veloso (facebook)
Ontario, Canada
Carepage: https://www.carepages.com/carepages/OwenVeloso
Sick Kids Foundation (Hospital for Sick Children- Toronto, Ontario)
Dx: Hypoplastic Left Heart w/aortic atresia
Owen had his stroke at around 8 or 9 days old. He had arrested and was on ECMO at the time, so the exact day is unknown. As a result he has left side weakness. The stroke did not really effect Owen until it was time to start working on his physical development. It has been quite a struggle. Currently, Owen is 20months old and is still unable to walk. He only began to crawl at the beginning of the year, shortly after learning to get up into the sitting position on his own. He works with an occupational therapist and a physio therapist. Owen has shed many tears but his determination is astounding. On Feb. 16, 2010 he pulled himself to the standing position for the very first time!!! We do not have any doubts he will be walking soon.



9. Andrew Hirt (Age: 10 yrs.old)
CHD - HRHS, Tricuspid Atresia, Pulmonary Atresia and an ASD / STROKE SURVIVOR
Mom to Andrew: Carolyn Hirt (facebook)
Lees Summit, MO
Carepage: https://www.carepages.com/carepages/AndrewHirt


10. Lorelei Hoagland ( age:4yrs.)
CHD - HLHS / STROKE SURVIVOR
Mom to Lorelei: Nicole Haarmann Hoagland (facebook)
O'Fallon, MO
Carepage: https://www.carepages.com/carepages/Loreleih