Help MJ learn how to eat at Kennedy Krieger

Through therapy and life experiences, I've learned how important it is to share your burden and ask for help as part of self-care. We did a fundraiser for our son 6 years ago when he was born. We are now asking for help again.

 

Our story starts 5/1/2016 with MJ being born 2 months early, 2 lbs 5 oz, with a condition called EA/TEF. His esophagus was not connected. He also had a connection from his trachea to his stomach. He had surgery immediately to detach the link from the trachea and to place a Gtube so he could receive nutrition. MJ was too little to perform the significant surgery we needed for him to eat by mouth. After 5 1/2 months of growing, MJ's esophagus was reconnected. The surgery and his recovery were complicated, including being on two types of ventilators during recovery. After 6 1/2 months, MJ came home on oxygen and with his Gtube. We were told he'd need his esophagus dilated (under anesthesia) to keep the esophagus open. We went back within a month for a "normal" dilation. His esophagus had closed. The surgeon had never seen anything like this. He had to poke a hole through each end with surgical equipment to reopen it. It caused severe scarring and malformation. This led to him not being medically cleared to try foods until age 2.

 

When we were discharged, nurses shared how hard it would be for MJ to eat by mouth. In my mind, I thought, we'll show you. Look what he's done in 6 1/2 months! Fast forward 3 years. MJ had 27 dilations. His trachea is also a concern. He's off oxygen, wahoo! When he gets sick though, he's out for days/weeks. MJ is still Gtube fed. He's had issues with coughing and screaming in pain. No one can figure it out. We switch MJ to blended food(we make) as his nutrition. It helps, but there are still episodes. We are consulting the experts on how to "fix" him during this time. MJ is accepted to Boston Children's EA/TEF program, where everyone says to go. In November 2019, MJ underwent surgery where they removed the original esophagus repair, moved his esophagus, and stitched his trachea to his spine. They fixed him! He has not had any dilations since 11/2019. MJ had 3 scopes to confirm the surgery worked. On the last one, they told us they couldn't even tell he'd had repairs. INCREDIBLE!

 

Today, at age 6, MJ still receiving food via Gtube. He is developmentally delayed with walking, some speech, and eating. MJ receives PT at school and through my insurance. He receives Speech through school. Most importantly, weekly feeding therapy through my insurance. Our son never had a bottle or pacifier or learned to eat by mouth. We've tried medicine, changing his feed amounts, and eating less daily to motivate him to eat by mouth. The dilations and medical clearance to try eating were an impact. MJ is interested in food. At school, he orders his lunch and has his favorites of pizza and anything with ketchup. If he could survive on condiments, we'd be in good shape. He licks everything but doesn't chew/swallow anything that isn't a softer consistency (pudding, yogurt, ice cream, whipped cream.) During his current therapy, he's learning to bite/chew. However, when he takes that tiny bite, he spits it out because he's scared to swallow, gagging, and just uncomfortable. For almost 2 years (including an appeal), we've been working to have MJ accepted to another expert, Kennedy Krieger Institute in Baltimore, MD. He's been accepted and starts daily intensive outpatient feeding therapy 6/15. We will be there until 8/8. The program is 9-5, 3 meals daily, with speech and OT, Monday through Friday.

 

MJ makes progress every day. Walking with a walker, eating soft purees, asking for food, no oxygen, potty trained(when you can't stand), and attending pre-k and kindergarten, were incredible milestones. We hope that Kennedy and MJ will help us achieve the next big one. MJ is motivated and goal-oriented (prizes of monster trucks usually). With his drive and their expertise, we hope the program is a success. This will be life-changing not only for him but for us. With the nature of the program, we need to be living in Baltimore, close to the clinic. Our expenses will include double rent/mortgage, utilities at home, living expenses in Baltimore, out of pocket expenses at $3000, and any other services/insurance for MJ while he's there. One advantage to having a medically complex child is that we've already hit half of our out of pocket this year.  We will also have our own medical and therapy costs. To add to our stressed financial situation, James was laid off in February. Unemployment kicked in 2 weeks ago. We had savings for emergencies and have used that. We've had to start tapping into retirement. We are utilizing resources through the clinic to find reduced housing, nothing free is available at this time. I've reached out to my community for resources/help with finding accommodation.

 

Now that you've heard MJ's journey and our needs, I'm asking for help for MJ and us. If you cannot contribute, sending us positive vibes, healing thoughts, or prayers is welcome and appreciated. MJ's and our army have grown so vast since his birth. I can't thank everyone enough for all the support, emotional and financial, we have received for 6 years. Thank you for being a part of our lives.

 

#eatefwarrior #nicugrad #superkidmj #learningtoeat