Wednesday, July 6, 2011

Scoliosis after Spina Bifida

My apologies for also being a severe MIA momma! As you may remember, we were expecting a little girl in April. Ellie Reese McGinley arrived on April 8th after a very healthy pregnancy. She was probably the most anticipated little miracle in Little Rock those few weeks by some very special medical staff who took care of the twins birth. I think most of all, we've all been touched by SB and Eli's life and we all wanted to see a happy(er) ending to this chapter. And we got it. I could go on and on about her birth but the main things I want you to know is we were given exceptional care in the delivery room. We had requested old staff from the twins birth to be a part of this birth. And they all came through for us in the operating room, even allowing me to see Ellie, her back, and they gave me assurance that she was healthy. It was a healing birth with what felt like family.

picture of Ellie and Walker (Eli's twin brother)Within the past few weeks, we have been hit hard by what feels like a golf ball pegged us in the head. One night as I was burping Ellie, I noticed her back looked crooked. But being a paranoid momma who knows way too much about SB, I convinced myself that I was being too paranoid and I brushed it off. But when my husband asked several days later if I 'thought her back looked crooked', my jaw dropped and it became real....again. During her 2 month checkup, I asked our pediatrician to look for us. She is a dear friend of ours and held her composure well when I reluctantly asked her. I don't want to be that 'momma' who has to be the paranoid one who asks too many questions. She didn't seem to mind and proceeded to send us to xray for reassurance. The next day, I got the call: Radiology report stated 'Fetal Congenital Scoliosis'.

We were sent to Arkansas Children's Hospital for a repeat scan the next week. Outcome? They are ruling it a 'positional' situation right now because she is not able to sit up or stand on her own yet. But xrays are clearly showing a 20-degree c-curve. We are praying it straightens out between now and the walking stage. But if not, she's still perfect in our eyes. We've dealt with worse. We can handle this.
What are the chances of having a repeat spinal situation? Eli's severe SB diagnosis upon birth hit us hard. This, well, not so much. We hated to hear it but she's here with us and a seemingly happy baby. We will hold our heads up and be thankful for her sweet little life. What a gift she is.

National Conference:

So I owe some of you a very BIG thank you! The Project Eli director, Julie Mayberry, attended the national conference and spoke on Monday evening. She had around 50 in attendance but said through out the conference as she met people and told them who she was and what she was promoting, she received a lot of "I've seen this before!" and "I've heard of this". She's not a blogger but told me it must have been this blog and the connections that you amazing families have on here. To date, the Project E.L.I. documentary has been handed out to 2,000 families, clinics, or physicians! It also has close to 900 hits on YouTube. We are all saving babies lives! Haven't seen it yet? Here's the link to watch the 30-minute documentary on YouTube:

Please know that they were able to do this because of donations and are still relying on donations to make more copies to pass out. If you or your organization wants to help, please check out Eli's First Giving Page:

Eli's birthday is coming up in 4 weeks. He would be 2 years old. We are faced with having to celebrate their birthday again this year, as every year for now on, with only Walker. Its the most dreadful week to celebrate 2 births and a death all in one week. It's getting harder to breath again, as I felt this last year. Please say a little prayer for Eli on August 3rd. And hug your babies tight.

With Love,
Jodie McGinley


Jamie said...

She is beautiful! Project E.L.I is amazing, I wish I had known about it before I had Madi. I felt so alone. what a great thing!

Gretchen said...

I LOVE project E.L.I. too!

And you are so right... when you dealt news on your other children after having dealt with earthshattering, it just does not seem so bad! I remember the SB diagnosis after an infant death, and it was easier to deal with. And recently having my "normal" child diagnosed with sever learning disablities... hard, but definately do able!

Abdul Basit said...

Its too much deadly now please tell us how is your baby ? what about his scoliosis latihan ?