Our little Tripp story... Hey friends and family. This update and request is long overdue! Would you first celebrate with us and then pray with us for our little Tripp? I was reminded a little while ago through a video I posted how precious and short life is. And how worthy and wonderful it is to love and be loved. It reminded me also how Tripp shouldn't be alive today. Born 9 weeks premature (that's a lot of weeks early), his 30 day NICU stay was scary and wonderful. JFK's little boy died 50 years ago from RDS (a lung disease) that should have taken Tripp as well. But RDS is now, often, treatable with temorary lung tubes that get removed once the lungs heal. Thank you God that Tripp had this very procedure and responded beautifully back in October of 2016.
There were also sweet moments in the NICU... Holding Tripp's little finger for the first time, daddy's first time changing a baby's diaper in the incubator, our first time holding him, lots of songs sung and books read. Wow. This little boy is our miracle baby because he is alive and we have the honor and privilege of loving this little gift.
Things were wonderful and we couldn't wait to bring him home right before Thanksgiving! Then things began to turn over the next few months. He was crying and screaming non stop, clearly in a lot of continual pain and discomfort. Then one day, we noticed blood in his stools. After many doctors visits, it was discovered by a GI specialist that Tripp was suffering from an extreme case of Shigella, a very rare food/water born illness. Our doctor had not treated someone for Shigella in over a decade and he's never seen it in someone so young in all his 22 years of his practice. After 2 to 3 months of pain and discomfort, 2 months of his tummy regulating itself, as well as 2 rounds of antibiotics, Tripp was on the upswing again. What a brave 6 month old. We were so thankful that he was not hospitalized for this illness. And we couldn't wait to really start watching Tripp grow and learn new things.
Fastforward a bit. It's been about a year since the Shigella, and little to no tummy time happened during the first 6 months of his. So at this point for our little family, his 9 week prematurity (and possibly effects of Shigella) is leading more and more to mild cerebral palsy. To be honest, that term to us is sometimes not the most helpful as the CP spectrum is incredibly broad (my sister Brooke was diagnosed with CP consisting of severe brain damage.) This is not the case for Tripp. But this also isn't the place to go into all the details. In short, Tripp's gross and fine motor skills have been most affected which is why at 20 months you might have noticed that he is still not moving into sit on his own, crawling, standing or walking, or as interested at times at playing with certain toys or doing certain things because he can't use both hands at the same time (hard to use both hands when you can't sit/support yourself!)
We are so grateful Tripp is alive. His smile and laugh makes us melt. We feel so blessed to have such a sweet, courageous boy. It's been so hard not to see our little man grow in certain life and play skills that most of us really take for granted. Like bringing mommy a toy, climbing up onto the couch, playing with toys using both hands, helping daddy with small tasks. I cry sometimes imagining him walking up to me with a toy, knowing it may never happen. And Tripp gets frustrated because he wants to do more and can't. He's also having ongoing muscular problems with his eyes. He's already had one surgery and may need a second. Our hearts ache. So many questions, lots of doctors and therapy visits, a million decisions to make with little information. It's wild. It's scary. And our hope in God amazingly grows more. Never have we prayed more than this past year, not just for healing, but for those impatient moments of the "Why God's" and the "should we try this or do that" or even just simply "Jesus, I need you in this moment".
Tripp is making wonderful progress and has an amazing physiatrist at CHOP. He just got his leg braces to help support him to stand! Also will be getting an activity chair and a walker/gait trainer in the next few months to help him do all the things he wants to do. And he has been receiving therapy from awesome women through CHOP and Early Intervention. In some ways, we couldn't be more thankful and excited! In other ways, Tim and I struggle to embrace all of this. So that's my prayer that I would like you to pray for us and with us. Embracing the good as well as the terrifying, the lonely, the confusing. I don't mean that this will feel good, or that we shouldn't cry or be sad or even angry at times. We do and at times we are. But I have found that far too often, our hopelessness starts to rule us and we forget not only what we have been given, but what we get to give to Tripp: God's love. And lots of laughs, cuddles, hugs, and kisses!
We've also realized how stubborn we can be and often control freaks which leads us to think we can endure all this alone. We can't. We need Jesus. We need community. We need you. You are so precious to us in this journey. Please, please, please more than anything when you think of us, pray. Pray for hope, for strength, for healing, for Tripp to know Jesus, and for God himself to be with us. Tripp is so precious to us and we love him so dearly. I've learned more about endurance and joy from him than I have from anyone else. What a bundle of joy!
Thank you so much. We love you all and will keep you (better) posted... I've also posted Tripp's story as a journal entry so that you can feel free to post any comments. Thanks!