HeartMamaJen
Earning My Ears
- Joined
- Sep 30, 2011
- Messages
- 14
Hi there!
Ava made her wish a couple of months ago, through the Make A Wish Foundation. We contacted them right before Ava's fifth(which was in May) birthday and after receiving news that Ava would be undergoing what would be her third open heart surgery. We have our dates set(December 20-31), we are extending our trip out of pocket for a few days to give the kiddos(mainly Ava) some time in between all the FUN to rest. Haven't made ANY reservations yet. Open to suggestions!
Guess I should begin with some introductions first! Starting with the wish girl, Miss Ava.
Ava is our 5 year old little miracle. She was born three weeks early, but full term. On the second day of Miss Ava's life, we discovered that her heart had been holding quite a few serious secrets! Ava was diagnosed with Hypoplastic Left Heart Syndrome, after detecting a murmur and further investigating. She was immediately transferred to UCSF Children's Hospital. From there, doctors ran more tests and Ava's actual diagnosis is CHD(congenital heart disease) consisting of interrupted aortic arch, vsd, asd, left ventricular outflow obstruction. Ava's heart defects were deemed incompatible with life, and would require a series of open heart surgeries. About a week later, Ava was also diagnosed with 22.q.11.2, a chromosome deletion syndrome. Ava had her very first open heart surgery to begin repair on her heart at exactly one week of age. She was barely 7 pounds. Ava suffered a stroke while in the OR, and many complications after. Our total recovery/hospital time was just one week short of three months. Once Ava was stable enough, we were transferred to UCD Children's Hospital which is closer to home, so that my husband could return back to work and Ava could be closer to family and friends while she continued to heal.
Ava's second repair came just after her first birthday, a year after her first surgery. During this repair, her surgeon was able to do a dual ventricle repair, making her for the first time a double ventricle baby! Recovery time was significantly quicker and less "bumpy" though Ava did end up requiring a permanent pacer placed. We were home after just 2.5 weeks!
Ava has had many, many catheterizations for stenting and ballooning her narrow pulmonary arteries, as well as various other procedures and minor surgeries. Ava was fed exclusively via gtube for the first three years of her life due to paralyzed vocal cords and severe oral adversions. She has severe speech delays, and possible palate issues(currently being investigated). Ava is doing very well in Kindergarten after two successful years in pre-k. She has also taken a little soccer and is going on over a year in ballet lessons now. She will have her second winter recital in early December and is super excited for it!
This is our son, Greg. He is the 11 year old greatest big brother ever to Miss Ava, and just started his first year in Junior High!! He is an avid baseball player/junkie and basketball fanatic. Pretty much any sport, he is into. He also plays a mean snare drum.
Love my lovies!
Our whole little family
Ava was able to meet up with her wish granters at the Wishing Place here in town, what a magical and very special experience that was! Ava's wish was to meet Cinderella and stay in Cinderella's castle. Unfortunately, we are told the castle is not currently open to Wishers, so they are going to set up a private meet and greet with Cinderella for Ava, which our Princess is beyond thrilled and excited for!
Anyhow, I am super excited to be documenting this wish trip. I am not sure at all what I am doing, but am ready to try to figure it out as I go along. After reading so many great wish trip reports, I already feel like I am way behind the game, I need to get to some serious planning! Our trip is sneaking up so quickly. We have visited Disneyland a few times before, though none of us have made it to Disney World, so ANY and ALL advice, tips, etc would be wonderful! Thanks! Oh, I hope I did this right!
Ava made her wish a couple of months ago, through the Make A Wish Foundation. We contacted them right before Ava's fifth(which was in May) birthday and after receiving news that Ava would be undergoing what would be her third open heart surgery. We have our dates set(December 20-31), we are extending our trip out of pocket for a few days to give the kiddos(mainly Ava) some time in between all the FUN to rest. Haven't made ANY reservations yet. Open to suggestions!
Guess I should begin with some introductions first! Starting with the wish girl, Miss Ava.
Ava is our 5 year old little miracle. She was born three weeks early, but full term. On the second day of Miss Ava's life, we discovered that her heart had been holding quite a few serious secrets! Ava was diagnosed with Hypoplastic Left Heart Syndrome, after detecting a murmur and further investigating. She was immediately transferred to UCSF Children's Hospital. From there, doctors ran more tests and Ava's actual diagnosis is CHD(congenital heart disease) consisting of interrupted aortic arch, vsd, asd, left ventricular outflow obstruction. Ava's heart defects were deemed incompatible with life, and would require a series of open heart surgeries. About a week later, Ava was also diagnosed with 22.q.11.2, a chromosome deletion syndrome. Ava had her very first open heart surgery to begin repair on her heart at exactly one week of age. She was barely 7 pounds. Ava suffered a stroke while in the OR, and many complications after. Our total recovery/hospital time was just one week short of three months. Once Ava was stable enough, we were transferred to UCD Children's Hospital which is closer to home, so that my husband could return back to work and Ava could be closer to family and friends while she continued to heal.
Ava's second repair came just after her first birthday, a year after her first surgery. During this repair, her surgeon was able to do a dual ventricle repair, making her for the first time a double ventricle baby! Recovery time was significantly quicker and less "bumpy" though Ava did end up requiring a permanent pacer placed. We were home after just 2.5 weeks!
Ava has had many, many catheterizations for stenting and ballooning her narrow pulmonary arteries, as well as various other procedures and minor surgeries. Ava was fed exclusively via gtube for the first three years of her life due to paralyzed vocal cords and severe oral adversions. She has severe speech delays, and possible palate issues(currently being investigated). Ava is doing very well in Kindergarten after two successful years in pre-k. She has also taken a little soccer and is going on over a year in ballet lessons now. She will have her second winter recital in early December and is super excited for it!
This is our son, Greg. He is the 11 year old greatest big brother ever to Miss Ava, and just started his first year in Junior High!! He is an avid baseball player/junkie and basketball fanatic. Pretty much any sport, he is into. He also plays a mean snare drum.
Love my lovies!
Our whole little family
Ava was able to meet up with her wish granters at the Wishing Place here in town, what a magical and very special experience that was! Ava's wish was to meet Cinderella and stay in Cinderella's castle. Unfortunately, we are told the castle is not currently open to Wishers, so they are going to set up a private meet and greet with Cinderella for Ava, which our Princess is beyond thrilled and excited for!
Anyhow, I am super excited to be documenting this wish trip. I am not sure at all what I am doing, but am ready to try to figure it out as I go along. After reading so many great wish trip reports, I already feel like I am way behind the game, I need to get to some serious planning! Our trip is sneaking up so quickly. We have visited Disneyland a few times before, though none of us have made it to Disney World, so ANY and ALL advice, tips, etc would be wonderful! Thanks! Oh, I hope I did this right!
