Sunday, November 1, 2015

Bowe Lee

Back in 2005 I met Tina on a pregnancy board when she was pregnant with her first child and I with my fifth. Though we have never met in person I have kept in contact with Tina via Facebook. Last year Tina and her husband were blessed with a baby boy who they named, Bowe Lee. Bowe is as cute as can be. Bowe is also special in that he has Achondroplasia, the most common form of Dwarfism. Though Bowe is not defined by his diagnosis he will in fact face unique challenges in his life. I wanted Tina to share their family's journey and story. I hope that all that read this are blessed. 

The following was written by Tina:

"The joy of a new baby, the excitement of your accomplishment of VBA2C (vaginal birth after 2 C-sections) the exhaustion of labor, delivery and late night feeds and now the fear of the unknown due to an unexpected diagnosis for baby at just 2 days old.  Mothers everywhere feel all of these emotions, in different forms, but at some point I'm sure they all go through them, well, except the fear one.  Yes we all fear the unknown, because lets face it, the world is a cruel place anymore and life isn't easy, but add on an unexpected diagnosis and you see a whole new perspective. 

This very thing happened to us, but lets start at the beginning.  September 21, 2013 my husband and I were married.  I have 2 boys from a past marriage, Kanin and Korbyn.  February 2014 I found 2 pink lines!  We were excited, scared and happy as could be.  My pregnancy was uneventful.  Our 20-week ultrasound revealed we were having another boy, who we would soon name Bowe Lee.  He was stubborn and would not cooperate with the ultrasound all the way and we had to go back at 24 weeks to further evaluate his head and heart.  At 24 weeks everything came back just fine.  My pregnancy continued to go flawlessly.  I was preparing to have a VBA2C and was quite passionate about succeeding with this.  We made 1 trip to L&D as we thought he was coming 10-16 at 39 weeks and 3 days, but he tricked us!  I was scheduled for an induction Monday 10-20 at 40 weeks and 1 day, as they didn't want me going any further than that because of my C-sections and me wanting a VBAC.  Well, in the end, he did pick his own birthday and I went into labor late the night of the 19th and we showed up at the hospital a couple of hours earlier than expected!  I'll skip the labor details and get right to the point! On October 20th at 5:23 PM Bowe was born via VBA2C at 8lbs, 20.5" and 14 3/4" head circumference. He was perfect. 

On Tuesday when our Pediatrician Dr. Twogood stopped in my husband asked why his arms and legs were "all curled and bent" and we both explained to him that this was from the way he was positioned in the womb, but the Dr. did say he would be monitoring his growth closely as his arms and legs were on the shorter side.  He wasn't too concerned, or didn't appear to be anyways and stated he would monitor this through his well visit as he knew I was good about making sure the kids made it for these. We enjoyed our day getting to know Bowe and could not wait to go home the next day as we were in a hospital 2 hours from home and wanted to be with our big boys again! 

On Wednesday the nurse came to get Bowe to finish up his discharge, do his exam and for the pediatrician to see him to give us the OK for discharge.  He was gone a long time, and when he came back, the Pediatrician and his 3 students (at this time I don't remember their titles for sure) came back and I had a feeling something was wrong.  He told us he could not stop thinking of Bowe, and he usually had no problems leaving his work at work and his home at home. He told us that the 4 of them spent time that morning doing research and they thought they had come up with why Bowe's arms and legs were short.  They told us they thought he had Achondroplasia, the most common form of Dwarfism.  They wanted to do a set of x-ray's called a Skeletal Survey that would give them a better idea and also had a Genetic Counselor come and visit with us.  While Bowe was gone the Genetic Counselor gave us some information she had printed off (they were so prepared, he had visited with her before us, so she had time to prepare and be with us while Bowe was gone) and answered our questions and visited with us about Genetic Testing.  Bowe came back after being gone for a short time, but it seemed to take FOREVER for the Dr. to come back.  When he did, he told us the radiologist had called him and asked him to come look at the x-rays with him.  When he got the radiologist asked him what he was looking for, and then showed him each pictured, and each picture was "positive" for Achondroplasia.

Of course through all of this we were in shock, taken aback.  Wondering what we did wrong, wondering what I did in the pregnancy to cause this to happen. And then the worry, how would his life be, what kind of lifespan would he have, what kind of problems would he have.  We spent a lot of time crying, holding each other and thanking God for him. 

That night we got home and held on to our 3 boys tight.  My folks who had been watching the boys were still at the apartment knew things had been going on, but not too sure what.  We did tell them that night, and it was so hard.  Especially since we did not know a lot and didn't know how to answer all the questions.  At that tine we opted not to tell the kids, as we wanted confirmation on the diagnosis. We knew for sure he had dwarfism, and suspected it was Achondroplasia.  We slowly began to tell immediate family and close friends.  Two days after we were discharged we had to go back to see the Pediatrician for a weight check for Bowe.  While there, he also had a CT Scan of the head.  This was to get a baseline because of his increased risk for Hydrocephalus (water on the brain) as well as to check for spinal compression.  Both of these are seen in Achondroplasia.  We also visited with the Genetic Counselor again and started talking about family histories as well as Genetic Testing.  They had called the Genetic lab for the kit and were hoping it would be there when we came back in 2 weeks.


With each person we told, it got easier.  We were learning more and were feeling more confident.  We had learned that he should have a normal like us, have the same lifespan and shouldn't have any intellectual problems.  He would just be shorter than his peers and would have to be more careful in certain activities. 
At 2 weeks old, Bowe had his blood drawn for the genetic testing and it could take up to 10 weeks to get the results.  And it took that, because just before Christmas, on a Thursday afternoon I got the phone call.  Achondroplasia had been confirmed.  We were so happy, because we already knew quite a bit about it and we didn't want to have to put him through any further testing.  We then decided we would tell the boys.  They didn't completely understand, but fortunately we had been watching many of the shows on TLC that featured families with Little People, so it helped some.  We decided to share with "the world" via a video on Facebook after the New Year. 

Shortly after Bowe's diagnosis we were introduced to Project Carson.  Project Carson is a program for families who find out their child has a diagnosis prenatally or at birth.  They introduced us to Early Intervention who has been with us since Bowe was about 6 weeks old and has provided him with physical therapy weekly since.  They also introduced me to a mother from Michigan whose son is a LP also.  She also introduced me to several Facebook Support groups who have become such great friends and have taught me so much! 

Bowe is now 1 and is doing great!  He is working so hard at becoming more mobile.  He does a little army crawling and just learned to put himself in a sitting position.  He also wants to stand up, but needs a lot of assistance and support.  He loves food and is learning to talk more and more.  He just had his 1-year check up with the Pediatrician and his is 19# and 26" and is doing perfect! 

In the beginning we were so worried about having a child with "special needs".  Now we can't imagine life without Bowe.  He is Bowe.  Of course he will have some limitations, is a little behind on his milestones and is monitored a little closer by his Dr., but he is doing so well!

October is Dwarfism Awareness Month and October 25th is International Dwarfism Awareness Day and I had created an even on Facebook to wear Green (the color for Dwarfism) that day and the response was overwhelming.  I had a co-worker locally create shirts for our friends and family to purchase, my moms group had shirts made and my Facebook was flooded with people near and far wearing green!  Our goal now is to educate and raise awareness in hopes that Bowe will be accepted as much as his peers when he is older as he is the only LP in our community.  We as Bowe's parents are always open to questions and hope that people feel comfortable asking. 

Since Bowe's birth, our Faith has helped pull us through.  God has been by our side and helped guide us in our decisions and has been with us each and every time we tell someone of Bowe's diagnosis.  I "lost" my faith for a short time after my divorce and had been rebuilding it and now I feel my Faith is stronger than ever and I love teaching and guiding the boys in learning and building their Faith. "

I will give thanks to You,
for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well. 
~ Psalm 139:14 ~

1 comment:

  1. Thank you so much for sharing Bowe's story!!! I truly appreciate it and appreciate you helping raise awareness for Dwarfism!!