Team Jilli and Lydia
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Team Jilli has been walking and running since 2013
Jilli was born in December of 2012 and appeared to be healthy at birth however was having some feeding struggles. At 2 months old she was admitted at CHW because she was vomiting across the room and choking. She was admitted again at 3 months old with respiratory symptoms. During her hospitalization, she was unable to gain weight and they placed an NG tube to be used at night to give her extra calories. When she was 4months old she was admitted again for vomiting so they switched her to an NJ tube. At 7 months old she had surgery to place a GJ tube. When she was 11 months old she ended up with pneumonia and Pulmonology joined her team. When Jilli was 2 years old we noticed she was getting very exhausted just from sitting with toys and in working with her PT and Pulmonology we figured out that when she walks her pulse ox drops into the 80s so she was put on oxygen during the day. Jillian is seen by genetics at CHW as they try to figure out the underlying disorder however we still do not have a name for what is causing all her symptoms. We work with many great teams at CHW and spend a lot of time there. Jilli has crashes of unknown orgin where she wakes up and is tachacrdic, struggles to breathe and looses all muscle tone. These events mean several days in the hospital while we watch her vitals, give her medications to help her body and work with therapies to help her rebound as these crashes cause a several year backslide in skills that takes 6+ weeks to rebuild. During these events Jillian has become non responsive and has had a seizure during them so we move quickly to get her to CHW once they start.
Lydia was born in June of 2016 and started having feeding difficulties early on as well. By three weeks old we realized that we were walking down the same path again and Lydia was admitted at CHW where they placed an NJ tube. When Lydia was 3 months old she had surgery to place a GJ tube. In October of 2016 Lydia had a GI bleed and spent almost a week in the hospital. While Lydia has many of the same symptoms as Jilli they each are their own person with their own differences. Lydia's GI system is even more impacted then Jillians and her stomach is drained into a diaper all day long. She also struggles with bacterial overgrowths in her GI system and we curretly are working to figure out why her stomach bloats very badly and causes pain. Lydia was also found to have a small heart murmor in 2017 and we are still in the midst of the work up for that.
This past year the girls have both joined the special needs program. They do care coordination and make sure that the girls are getting what they need. They help to facilitate communication between doctors and help us to best advocate for them. We are very grateful for this team.
Some of the girls’ favorite people at CHW are from the Child Life team. We are especially grateful for art and music therapy for all the do to help support the girls emotionally through everything. One of the big reasons we participate in the run/walk is to raise money to go back into things like the expressiver therapies because they mean SO much to my girls. From giggles during times that are more rutine to hearing Jilli sing again with Melissa after we were not sure that would ever happen again. The expressive therapy team is full of some amazing people that we are so thankful for! Please help us in support them and thanking them for all they do!
Appointments at CHW:
J: over 200
L: over 50
Times in the OR:
Specialists we see or have seen:
To read more of the girls’ story please visit brownandpinkpolkadots.blogspot.com
Our fundraising goal: $3,000.00
Raised to date: $3,248.00