Monday, July 11, 2011


...things are best said by someone else.

Check out what Roman's mommy (Erica) posted.

It's called "Postcards from Holland."

And don't forget your tissues.

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

Tuesday, July 5, 2011

Insights and MIA

So, sorry I've been MIA for the last two weeks. I've been throwing myself a pity party that so many of my SB mama friends were enjoying the national conference while I dealt with stuff here at home... But you know, yesterday, I saw some WONDERFUL photos on facebook and some blogs that lifted my spirits. Pictures of you. Eating together. Laughing together. Fellowshiping. And having a great time.

I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.



Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.

BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.

Which I'm totally excited about. Now, if I could just get my hands on a copy!!

(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)

----- ----- ----- ----- ----- ----- -----

In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.

“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.

A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”

“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.

“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.

A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”

Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.

“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.

Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”

Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.

Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”

Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”

If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.

Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.

Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.

When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.

I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.

Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.

I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.

It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.

The first is that I love my sister.

The second is that I won't ever let her go.