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I started this fundraiser for my sister and her daughter.
“Back in early March, Josh and I met virtually with Charlotte’s craniofacial team at Nemours in Orlando. This includes a pediatric neurosurgeon and plastic surgeon (and many other doctors). They requested to see Charlotte in person the next week to discuss the CT scan results. We met with both surgeons who both agreed Charlotte will indeed need surgery by her first birthday. She was diagnosed with craniosynostosis and Chiari malformation and has what is called a ”beaten skull” (basically little holes in her skull) which is caused because the pressure is starting to build on her brain due to her skulls shape. This causes her eyes to bulge due to the pressure and can prevent her brain from growing properly. If left untreated it can cause major issues for our sweet girl and we have no choice but to have the surgery. As of now her team of surgeons are practicing the surgery on the 3-D model of her skull. Apparently they have never seen a case exactly like Charlotte’s and is making this a complex case for them to solve. We are looking at “springs” installed in her skull that will be turned with a crank weekly for 3 weeks or so. Which will make our hospital stay a bit lengthy. We are waiting to meet with a geneticist and we got the call this week and have finally scheduled a surgery day for Charlotte. The big day is going to be May 12th in Orlando at Nemours Children’s Hospital. The surgery will last anywhere from 4 to 6 hours. We are not sure on the length of her hospital stay, but are hopeful we won’t have to stay too long! Unfortunately, this surgery isn’t the end of the road and Charlotte will have continued care over of the course of her childhood to monitor her skull. We are hoping to stay at the Ronald McDonald house IF they have a space available for those days. However since we could be in the hospital anywhere from 3 days to 3 weeks, we need financial help for travel and food (and possibly a hotel depending on the RMDH) and any other expenses that may come up for us or for Charlotte during this time. Any help or shares is so so appreciated!”
Update from Morgan as of 3/10
It has been a really emotional week for us and we could really use some thoughts and prayers. We went from thinking Charlotte was having skull surgery Friday (which was already terrifying) to finding out they can’t operate yet due to findings on the new scan ran on her and THEN finding out she could have other medical complications…. Last week Mom and I took Charlotte to Pensacola for another CT scan so the doctors could have a clearer image. After the new scan the doctors decided Charlotte has lots of holes (more than they thought) and they are seeing too many at the base of her skull which isn’t conclusive with increased cranial pressure. It points more towards a metabolic issue. Charlotte still NEEDS the surgery for craniosynostosis and the sooner the better. Ideally this surgery happens before a babies first birthday and that is fast approaching. We have an appointment with an endocrinologist on May 24th in Pensacola and hopefully after that we should have a new surgery date. Please pray they will find no other issues and they will be able to go through the surgery with no extra serious risk to our girl. *edit to add a picture of the procedure. I still have a hard time with pronouncing her syndrome so I figured I’d share the fun medical words with you all
“Back in early March, Josh and I met virtually with Charlotte’s craniofacial team at Nemours in Orlando. This includes a pediatric neurosurgeon and plastic surgeon (and many other doctors). They requested to see Charlotte in person the next week to discuss the CT scan results. We met with both surgeons who both agreed Charlotte will indeed need surgery by her first birthday. She was diagnosed with craniosynostosis and Chiari malformation and has what is called a ”beaten skull” (basically little holes in her skull) which is caused because the pressure is starting to build on her brain due to her skulls shape. This causes her eyes to bulge due to the pressure and can prevent her brain from growing properly. If left untreated it can cause major issues for our sweet girl and we have no choice but to have the surgery. As of now her team of surgeons are practicing the surgery on the 3-D model of her skull. Apparently they have never seen a case exactly like Charlotte’s and is making this a complex case for them to solve. We are looking at “springs” installed in her skull that will be turned with a crank weekly for 3 weeks or so. Which will make our hospital stay a bit lengthy. We are waiting to meet with a geneticist and we got the call this week and have finally scheduled a surgery day for Charlotte. The big day is going to be May 12th in Orlando at Nemours Children’s Hospital. The surgery will last anywhere from 4 to 6 hours. We are not sure on the length of her hospital stay, but are hopeful we won’t have to stay too long! Unfortunately, this surgery isn’t the end of the road and Charlotte will have continued care over of the course of her childhood to monitor her skull. We are hoping to stay at the Ronald McDonald house IF they have a space available for those days. However since we could be in the hospital anywhere from 3 days to 3 weeks, we need financial help for travel and food (and possibly a hotel depending on the RMDH) and any other expenses that may come up for us or for Charlotte during this time. Any help or shares is so so appreciated!”
Update from Morgan as of 3/10
It has been a really emotional week for us and we could really use some thoughts and prayers. We went from thinking Charlotte was having skull surgery Friday (which was already terrifying) to finding out they can’t operate yet due to findings on the new scan ran on her and THEN finding out she could have other medical complications…. Last week Mom and I took Charlotte to Pensacola for another CT scan so the doctors could have a clearer image. After the new scan the doctors decided Charlotte has lots of holes (more than they thought) and they are seeing too many at the base of her skull which isn’t conclusive with increased cranial pressure. It points more towards a metabolic issue. Charlotte still NEEDS the surgery for craniosynostosis and the sooner the better. Ideally this surgery happens before a babies first birthday and that is fast approaching. We have an appointment with an endocrinologist on May 24th in Pensacola and hopefully after that we should have a new surgery date. Please pray they will find no other issues and they will be able to go through the surgery with no extra serious risk to our girl. *edit to add a picture of the procedure. I still have a hard time with pronouncing her syndrome so I figured I’d share the fun medical words with you all