We're not too proud to ask for some support to help our daughter, Emmy, meet (and hopefully exceed!!!) her goals.
TL;DR: Emmy has overcome lots of hurdles in her short 3 years so far - she is super close to achieving some big milestones like standing and walking, but she completely lacks the confidence to do it on her own. We want to send her to a three week intensive DMI/PT program to gain the confidence she needs to be more independent! The facility we're looking at is out of network = $$$, so we're hoping to raise funds to offset the costs of the program itself ($5700) and whatever the lodging costs will be for us while we're in the Nashville area.
Background:
After a typical and full-term pregnancy, our fourth and final girl, Emery "Emmy", was born November 9, 2022, and got the OK to go home the next day. She was so beautiful and the perfect final addition to our family. After a few weeks of growing and developing, we noticed a few features that raised some suspicions for us - her eyes were open, but not very far; she only nursed and never took a bottle or pacifier; she had a side preference (the right), but did not show signs of torticollis. After a few appointments with specialists, we started the cranial orthotic for brachycephaly and plagiocephaly, and were also having her followed closely by pediatric ophthalmology for her congenital bilateral ptosis. Things were progressing and we were relatively happy with the plan and next steps to address our concerns.
July 12, 2023 changed everything for us. While at the Post Office to submit her passport application, Emmy woke up from a nap in her carseat and did a strange jackknife motion repeatedly for about a minute or so - eyes rolled back in her head, arms jerked up, and legs straightened out. It was terrifying. We immediately got in the car and headed to LeBonheur Children's Hospital where she was quickly whisked back through triage and into the ER for suspected seizures. Less than an hour later, the EEG showed the chaotic brainwave patterns that are characteristic of Infantile Spasms (IS). The following months were a blur of hospital stays, injections, insurance calls and approvals, and fear. Thankfully, the spasms were completely knocked out with the frontline treatment.
Additionally, through a few different genetic tests to determine the cause of her seizures, we discovered there was a reason behind her many confounding issues: Emmy was diagnosed with Chromosome 18p Deletion Syndrome. It's not very common (but not rare) and has a huge spectrum of issues and challenges that it may cause.
Unfortunately, there were a few more hurdles for Emmy to overcome in the year after her seizures: in October 2023, she had surgery to correct her ptosis (yay!) and for the first time our baby could see the world; because of her low tone and seizures, she never really had the opportunity to learn how to eat, so in February of 2024 she had a G-tube placed. Both of those surgeries gave her the momentum she needed to start catching up to her peers - she started rolling and sitting and crawling!
Our Ask:
Now our girl is super close to standing and walking, but still requires assistance. She has the strength, but lacks the confidence to be able to do these things without our help. We've exhausted all of the little tips and tricks to try to get her more independent, so now we're considering other options. Her therapists and doctors all think that an intensive program may be the best catalyst for her confidence and independence. So we're looking at one near Nashville that specializes in DMI and offers a three week program - 2 hours a day, 5 days a week of intense therapy and confidence-building. Sadly, they are out of network = $$$. The program itself can cost up to $5700, and then we need to add the lodging costs for those 15 days of therapies.
We're putting our pride aside to ask for help in giving our Emmy her best chance for success. Any donation or share is greatly appreciated. Every penny donated will be used towards the program and accommodations - if we aren't able to raise enough funds, we will absolutely refund donations. We're super hopeful that we can make it happen for her to attend this year.
Thank you so much!