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live / e x c e p t i o n a l l i v e s by joy holden halfway
drew
moscona as a newborn in the nicu.
drew
spent seven months in the nicu. meet me d rew moscona loves to swing and feel the wind on his face. he is a happy toddler who will turn three in a few months, and you would never know that he was born with his stomach in his chest and only a tiny left lung.
erika
and
matt
moscona have journeyed a long way. ?ey finish each other?s sentences as they describe how far their little family has come since the diagnosis of a heart problem and congenital diaphragmatic hernia (cdh). cdh is the failure of the diaphragm to form which causes abdominal organs to migrate into the chest cavity. ?is inhibits lung growth and can endanger other organs. stunned with this news,
erika
and
matt
floundered.
matt
regained his composure and discovered that one of the two hospitals that specialized in cdh was texas children?s in houston. ?ey made appointments and spent nearly a year there off and on, including seven months in the nicu. ?e mosconas did all they could to assure the best care for
drew
.
matt
promised
drew
then and now, ?i will give you everything i can, if you can just meet me halfway.?
matt
describes
drew
?s major surgery, ??ey move everything down, so it?s a question if the lung will inflate.
drew
?s is inflating and growing, so that?s good news.? with eight surgeries in the rearview, the mosconas can shift their attention on improving
drew
?s daily life.
drew
?s grandmothers help while
erika
works at st. jude as the guidance counselor and
matt
hosts afr on espn 104.5.
erika
shares, ?our main focus now is therapy. we are kind of out of the woods as far as surgery goes.?
erika
and
matt
light up when they describe their miracle. he and his team are working hard to pass developmental milestones. ?he does therapy five days a week, occupational, feeding, speech, and physical. we have an amazing team of ladies who work with him,?
erika
states. ?ough
drew
is responding well, the biggest challenge is communication. his speech is limited to one word, ?more.?
erika
explains, ?he knows what he wants more of, and in his mind it makes sense, but i don?t always know what he wants. his receptive language skills are pretty good, but his expressive needs work. ?at gives us hope though. while it?s slow progress, he has never plateaued.? although ?the cdh repair is fixed and all of his organs are back in place, he still deals with the effects,?
matt
shares.
drew
eats differently than most kids because he has a gastronomy tube (g-tube) that allows him to eat via a pump and feeding bags.
drew
is an active toddler, so the mosconas plan an activity like a walk, drive, or nap during his hour-long feeds. ?we try to simplify our life as much as we can so we can have our little normal,?
erika
says. cdh affects the mosconas in other ways, too. ?ey are cautious about where they go because of his minimized respiratory function. ?ey also work together dispensing his eight meds and 18 syringes a day. ?early on, we were concerned with his mortality which was terrifying. yes, he has a different reality than many kids,?
matt
observes, ?but i look at
drew
and i see a happy boy who hasn?t had to be hospitalized for nearly a year now.? for parents struggling with a difficult diagnosis,
erika
and
matt
both advise, ?ask questions and advocate for your child. ?ere are options out there.? ?ey also want other couples to know that it?s okay for one parent to respond emotionally and the other to take charge.
matt
shares that in their marriage they have to be patient with one another because they respond to
drew
?s progress in different ways. ?e mosconas delight in watching
drew
careen around the living room in his walker or giggle with glee as
matt
tosses and flips him on the bed. ?we are amazed that we get to look at him every morning and night. ?ere?s always moments of doubt and grief, but i replace them with belief. whatever we have to do, we?ll do for him forever,?
matt
exclaims. ? 58 brparents.com | april 2017
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