2017 Briggs & Al's Run & Walk

Team Jilli and Lydia

***PLEASE SELECT A TEAM MEMBER ON THE SIDE AND THEN DONATE ON THEIR PAGE. UNDER GIFT DESIGNATION PLEASE SELECT “SPECIAL NEEDS PROGRAM FUND” as the girls are a part of that program***

 

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 was hospitalized on Good Friday this year for a week after an unknown medical event that caused her to become unresponsive. She spent a week in the hospital with a high heart rate and respiratory symptoms. It took her several days to learn how to sit and walk again and has been a slow process of work towards her baseline again.

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.

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.

 

By numbers:

Hospital admissions:

J:9

L: 3

Appointments at CHW:

J: over 150

L: over 30

Times in the OR:

J:7

L: 2

Specialists we see of have seen:

Airodigestive

Speech

GI

Pulmonology

ENT

Neurology

Neuromuscular

Dental

Eye

Rehab

Genetics

Special Needs

Muscular Dystrophy

Audiology

OT

PT

Allergy

Immunology

Surgery

Endocrine

Dysautonomia

Cardiology

Interventional Radiology

 

To read more of the girls’ story please visit brownandpinkpolkadots.blogspot.com

 

 

 

 

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