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Preparing for Patrick

Posted By kara On Monday, May 22, 2017 @ 8:00 AM In Murphy Family,Spina Bifida | Comments Disabled

[1]We are preparing for Patrick’s delivery. The time before a new baby arrives always feels interminably long. The addition of challenges makes it feel doubly so.

If you’d like to know more details about Patrick you can listen to our HomeWise [2]podcast in which we talk about our new baby’s special challenges.

Steve and I are about three weeks away from leaving for Cincinnati, OH, five hours from home, where we will await Patrick’s arrival and spend the first weeks of his life. The reality of being away from home for six weeks or more is slowly building in us. For the most part, our eight children will remain at home. Steve plans to travel back and forth in the weeks before delivery. Once Patrick is born, Steve and I will be spending most of our time in the hospital with him. Our younger five children (all under 14 years old) will not be able to visit Patrick until he is out of the NICU, likely two weeks after he is born.

Between now and then, I go to two different doctors’ offices for twice-weekly visits and ultrasounds. (We’re become close friends with the receptionists and nurses at each office.) I’m trying to focus on getting as much consistent school in as we can, both as a good use of our time and as a distraction to keep me from sitting around worrying about what the near future will bring.

We are hopeful and nervous and excited and fearful all at the same time. Oh, and uncomfortable. I’ve already hit the uncomfortable third trimester.

Since there is a possibility that this may be our last pregnancy, I have been taking a lot more pictures. We also have a lot of awesome ultrasound pictures. This is me at 30 weeks (last week):

Image may contain: 1 person, smiling, standing, tree, grass, outdoor and nature

In addition to Patrick’s spina bifida, a couple of other unrelated complications have cropped up. This is my fourth full-term pregnancy with gestational diabetes, and the first in which I’ve needed to take insulin. Keeping track of what I should eat, checking blood sugars, and remembering when to give insulin shots has become a part-time job.

The second concern is still in the “possibility” phase. There may have been some evidence of placenta accreta in the MRI we had one at 23 weeks. That’s a really scary diagnosis associated with all kinds of complications including life-threatening postpartum hemorrhage. We’ll learn more at 32 weeks. If I do have accreta, I will need to have a C-section and hysterectomy at the time of delivery. This would significantly lengthen my recovery time, confining me to one hospital (University of Cincinnati) while Patrick is at another (Cincinnati Children’s). I’m trying not to worry, but this has been a matter for a lot of prayer for me.

Spina Bifida and Homeschooling?

One thing that has been interesting (and dismaying) is how few resources there are for Christian homeschooling families with children who have spina bifida. Googling “christian homeschooling families spina bifida” brought up a few general resources on special needs. Our podcast was fourth on the list! (Friends, we don’t have that many listeners!) This indicates to me that there aren’t that many helps out there.

At our consultation appointment in Cincinnati at 23 weeks, the spina bifida clinic gave us a book titled, Children with Spina Bifida: A Parents’ Guide. From what I can see, this is the book on spina bifida for parents, similar to what What to Expect When You’re Expecting is for all pregnant women. The book is informative, full of explanations of things that will need to be dealt with, possible problems and complications, medical explanations, pictures, and parent testimonies. But much of the book is given to coaching parents on how to get the government and public schools to give you all the interventions and special services your child “deserves.” Fighting for accommodations in public school (starting with early intervention before preschool), getting the right IEP (Individualized Education Program) for your child, and dealing with the challenges of having a child away all day at a school that may or may not support your child’s physical, social, emotional, or developmental issues, much of the book simply did not apply to Christian homeschoolers who take have a church-, home-, and family-centered view and that individualizes all our children’s education. In fact, when I informed the developmental pediatrician that all homeschooled kids have an IEP (because we individualize for every child), he looked blankly at me for a moment, then gave a “huh.” Apparently, the thought had never occurred to him.

I recognize that Christian homeschoolers are in the minority of the population, but surely there is a forum, a website, a Facebook group dedicated to spina bifida, the most common birth defect in the United States. With a couple million homeschooled kids across the country, there should be many homeschooled children with spina bifida, a defect that occurs in 1 in 1,000 to 2,000 births. Do many parents of children with spina bifida feel so unable to provide for their child’s needs that they feel they must seek the help of the public school system? Are many cases of spina bifida so mild that homeschooling parents do not feel the need for additional help and support? The statistics on learning disabilities associated with spina bifida are quite high. Do parents of children with spina bifida not realize that their child’s learning struggles may be related to their physical challenges? I’m curious now.

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[1] Image: http://www.highlandsministriesonline.org/wp-content/uploads/2017/04/pregnancy-carrying-a-baby-with-spina-bifida-homewise-podcast.jpg

[2] HomeWise : http://highlandsministriesonline.org/blogs/highlands-blog/homewise-podcast/pregnancy-spina-bifida/

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