- S
Hello, my name is Stephen Easter. I never imagined using this platform, let alone for a child I now have who was in the NiCU. Willow Easter 3/12/23 4lbs 2oz born with CMV virus. She’s doing better daily but still fighting. After two other kids you just always think they will be ok, until they aren’t. We only travel about 50 miles a day to visit her, but also have a 6 and 11 year old in school so it’s still a lot of travel. Mom is just not getting able to drive after her C-section. I work for my family used car lot but I haven’t been able to work for weeks now. She will be in cabell huntington for a month or more, so any help will be greatly appreciated. I hate to even ask this of anyone but with gods help and prayer we can make it through this.
(ps please excuse any grammar mistakes, I will try and get back when I ever have time to clean it up more. Lol thanks and god bless)
Updates:
- 6/8/23 UPDATE we are having to make an emergency trip to Cincinnati Children’s Hospital with no plan once we get there but to get her the surgery she needs. We will just have to take it one day at a time now. God bless
went home with a idea of future surgery and more issues with her bowels.
- 6/15/23 went septic. Currently in Cabell Huntington near home to get treated with antibiotics and run more tests to hopefully find more out about the UTI and infection.
- 6/18/23 still in PICU with running antibiotics and more tests on the bladder tomorrow to hopefully determine more on her leaks and going septic. god bless
- 6/22/23 heading home on antibiotics waiting for more at Cincinnati with the surgery.
- 7/8/23 admitted back in the hospital for observation, more antibiotics and bloodwork. Just praying we don’t go septic again waiting for the surgery.
For more updates please just the updates tab ❤️
Little info on CMV virus she has:
- CMV is the most common infectious cause of birth defects in the United States. About 1 out of 200 babies is born with congenital CMV.
- One out of 5 babies with congenital CMV will have symptoms or long-term health problems, such as hearing loss.
Shes already had to have blood transfusion, her liver has been swollen from birth and her stomach is massive still. She has been diagnosed with an Anal/ vaginal fistula. Her platelets and hemoglobin are all tested weekly and always messed up.
Donations will be used as needed with the following: (in no direct order)
- Traveling expenses (gas, lodging)
- Food (lunch/dinners at hospitals)
- Baby supplies (diapers, wipes, creams, formula)
- Home cleaning supplies
- Laundry detergent & Items
- Help with bills with the house
- Miscellaneous items for family care
- Medication & Copays
3 Month mile stone!! 11 lbs!!
Thanks everyone and god bless you!
6 months now, we are just getting to 12.5 lbs and it’s been a long 3 months getting here. We have been septic, sick, diagnosed more by other doctors, moved to weekly visits with Cincinnati Children’s hospital and more. She’s still fighting her heart out and smiling through it all god bless this little bundle of joy and we will keep putting the work in for you.
Thank you all for keeping up with us on this journey for Willow! We will keep putting in all the work we possibly can for this sweet little angel.
Willows diagnostics
-updated 9-15-23
Congenital virus
- [ ] CMV - Cytomegalovirus
Colorectal & GI diagnostics
- [ ] stenosis of the anus / anorectal malformation
- [ ] Upper GI issues (still being determined) needs feeding tube for 60-80% of feeds
- [ ] GERD - gastroesophageal reflux disease
- [ ] Possible rectovaginal fistula
-Orthopedic diagnosis
- [ ] Hip dysplasia (left)
- [ ] Scoliosis
- [ ] Currarino syndrome - is an extremely rare disorder characterized by partial underdevelopment or absence of the sacrum (partial sacral agenesis), a mass in the presacral region and malformations of the anus and/or rectum (anorectal malformations).
- [ ] Congenital vertical talus- is a rare congenital foot deformity in which the sole of a child's foot flexes abnormally in a convex position giving the foot a rocker-bottom appearance. For this reason, this condition is often called rocker-bottom foot.
7/23/24
I am sorry for such a long update, but this little fighter has been doing so great! She’s had her spine surgery and it went great! Now waiting for her fistula surgery now. Still following up on spine and foot with orthopedics also. She’s up to 20 lbs! And has gotten so tall. She can crawl now and can stand in her pack and play by herself now!
She’s working with PT and other therapy as well! Her eating has gotten better and so is her legs. She finally got her braces as well!
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