Category Archives: Spina Bifida

Milestones

It’s November 2, 2017 which means it’s been exactly two years since we met James and he became our son! Happy Family Day sweet boy!

James has changed physically and emotionally in numerous ways. He’s several inches taller and several pounds heavier and he’s flourishing in Kindergarten. He’s receiving OT services at school and privately to help him as he rehabs from the major arm/hand surgeries he’s undergone this year. We will see his surgeon next week for his 3 month follow up, and to discuss and plan for the next round of surgeries for his right hand which we hope to start in January. The hardest part is retraining his brain to use his fingers in a new way, and trying to overcome the challenges of the contractions in his finger joints. They are considered “moderate” but they impact his strength and range of motion pretty significantly.

James loves to play with Andrew these days. They are constantly building and playing with Legos, Nerf Guns and Minecraft. He loves to play and read about policemen and firemen and loves to sit and just look at books. He’s eager to draw pictures thanks to an amazing art teacher at his school who motivates and empowers the kids to feel confident in their abilities regardless of their skill level. He’s done much better with making friends this year and has one friend in particular at school that he has really connected with and talks about often. It’s such a joy to see his confidence grow and social skills develop.

James will be SIX next week!! He was such a little boy, almost like a toddler, when we met him. But he has truly blossomed into this little boy who is growing up so quickly!

Milestone #2 – 

Tomorrow, November 3rd, marks four months since we met Emily and she became our daughter!

A week ago today she had surgery to remove a good portion of her lypomyleomeningocele, release her spinal cord which was being tethered down by this lypo, and then put her spine back together. The Lypo is a benign fatty tumor that formed in utero after the disruption of the formation of her spinal cord so it’s a form of spina bifida. The neurosurgeon lasered off the fatty tissue as much as possible, but there are a lot of nerves emeshed in it and so he couldn’t remove it all without risking further nerve damage. A neurophysiologist was monitoring and tracking nerves throughout her body during the surgery and they did note some minor impact to her left foot. It’s concerning in the sense that her left leg and foot are her strong one (her right foot is clubbed and the muscle in her right leg is almost entirely atrophied right now) but so far we are not seeing major symptoms. She does complain of pain from time to time in her feet and she is still very newly post-op so it’s hard to know if some of her mobility struggles right now are related to that or her back healing. But overall the surgery went very well and her incision is healing well. We just have to keep it clean and monitor it for infection or spinal fluid leaks. She handled the 48 hours  flat post-op so much better than we expected. We pushed to schedule her on Morphine right out of the OR as we knew she doesn’t have the language to communicate about her pain levels and location. She slept for almost the entire day after her surgery. By Sunday she was sooo ready to go home, but her body wasn’t. She couldn’t bear weight to walk on her on in the morning, so the team said one more day. We worked with an acute PT and got her going and by Monday morning she was ready!

 

 

 

 

 

 

 

 

We have to watch her carefully at home. She needs assistance sometimes and definitely fatigues easily. She’s been taking long naps and prefers to sit most of the time. She can’t “scoot” like she used to, or bend over to pick things up or get up from a squat position without holding on to something and grimacing. She’s as determined as ever though. We hope to get her in for a PT eval soon and start that on a weekly basis ASAP. We’re also sorting out next steps for treating her club foot with the Ponsetti method which involves serial casting for about 6 weeks and wearing a pretty intrusive bracing device overnight for several months. It’s our goal to have everyone cast free for next summer so we can enjoy the beach and swimming as much as possible.

I had really wanted to blog while in the hospital to continue my “Bedside Reflections” series, but unfortunately I accidentally left my laptop at home. But I want to share this briefly…

Emily is really scared of doctors and nurses. She cries as soon as they come into the room and gets really upset. Like every. single. time. Doesn’t matter if it’s a routine office visit, or an aide just trying to take vitals in the middle of the night while she’s sleeping. Just when I thought she’d settled, she’d hear the velcro of the blood pressure cuff and she’d start crying again. And in some ways I don’t blame her. All these strangers, all wanting to touch her and talk about her. No. fun. But we had one nurse who decided to go above and beyond. To not just tolerate it or try to “stay away” and not make her upset. She recognized her fear, recognized that she has more medical stuff ahead of her, and she took responsibility for Emily’s feelings about medical staff and started being really intentional about winning her over. She was creative and playful and engaging without overwhelming her. For example, she recognized that the gloves were an object of fear. So she made a funny face balloon out of them and turned them into something fun. She then advocated for her with all the other staff and got Child Life involved to help make things fun. From then on, every person who came in knew that they need to put in some extra effort to help our girl not feel so afraid. And it was such a gift. Such a relief. It didn’t take long, and didn’t take much, before Emily was clearly willing to offer some trust and pretty soon her whole demeanor around this nurse changed, and she started to let down her guard with the other nurses and aides too. This nurse, Carol, was a blessing to us and I’m so thankful for her wisdom and concern, and frankly – her ownership of her patient. She saw beyond the diagnoses and charts and med schedule, and she saw our girl and she didn’t run away in her own fear of not knowing what to do with a child that cried every time she walked in the room. She fought for her trust and she earned it. And in doing so, she encouraged me to speak up to future medical staff and push them to do the same. Because yes, it’s asking more. And yes, her medical stuff is the priority. But her emotional well-being is equally as important and since we’re not going to be strangers to medical staff, it’s important she feel as okay as possible about it all. Nurse Carol has set the bar high and I hope to hold others to it going forward. A huge thanks to ALL nurses for your kindness, strength and perseverance in what is often a difficult and thankless job.

 

 

Transition Time

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Our oldest celebrates her 11th birthday tomorrow and I can’t even wrap my head around having a middle schooler who is quickly becoming a young woman right before our eyes. She’s fantastic and at least once I day I think to myself that I truly don’t know what I would do without her. I’m really going to miss her when school starts next week, but I’m excited for her to have a great year.

Andrew celebrated his 8th birthday this past month and will be starting third grade at the Montessori school in our town. I homeschooled him last year which was definitely the right thing for that year. We are equally confident that this is right for him this year. It’s a financial sacrifice, I’ll be honest. We are carrying a fair amount of adoption debt, and adding private school on top of it leaves us with some big question marks about how all of the payments will be made. But the public school system just doesn’t have the services and resources to provide the environment he needs to succeed in school – academically or emotionally. It adds a layer of complexity to our days as I have to drive him to and from school each day. But after seeing how he responded during his two day visit in the spring, we are really excited for him to get started and thrive!

James starts Kindergarten at the same elementary school Gabi and Andrew went to. He has a very kind, loving and experienced teacher. He’ll be going in the mornings for a half day. He’s got a ways to go in terms of his new hand and fingers and the fine motor skills required for school are going to be a challenge. It’s not only retraining his muscles and hand structures, it’s retraining his brain. He was so used to using only his right hand while the other one was in the fixator and cast. It’s still his default to use his right hand for everything. And his brain has to learn for the first time, how to use his old index and middle finger as a thumb and index finger now. If you pray for him, please pray specifically that the scar tissue would further break up, that strength and range of motion would increase in his fingers and hands, and that he would have the personal emotional strength to press on towards the goal of a fully functioning left hand. We need this hand to be ready to go when it’s time to begin the process on the other hand.

James was reunited with Ping Ping this last month! We have so enjoyed seeing these two together and seeing her with her new family. We try to see them at least weekly. They’ve gone to the 4-H fair together, our adoption group pool party, and just played at each other’s houses. PingPing loves babies so she really enjoys being with Emily too, and it’s been neat to see her interact with all of our kids. So grateful to God that the little girl we met less than two years ago is now a cherished daughter and sister!

And finally Emily…baby girl turned 2 this past month and has been with us for two months this Sunday. We had a brief respite from all the medical appointments, and then last week we had a very full day at CHOP. Next week we have several appointments at DuPont Nemours in Wilmington, DE for second opinions, and then back to CHOP to meet with a surgeon that we couldn’t see last time because we got behind in schedule when her MRIs started late. We have another big round of bloodwork to do but thankfully got insurance approval to do it at our local children’s hospital with the help of child life and hopefully a little Versed to help her relax – this worked GREAT at CHOP. We are slowly getting some answers, and putting the pieces together of different things related to her diagnoses. We anticipate the first surgery in October which will have us inpatient for up to 5 nights and then we’ll begin serial casting of her club foot as soon as her back has healed enough to allow that. We will have to drive to DuPont for the casting every week for 6-8 weeks. DuPont is almost 2 hours one way. The hope is that we can attain a good enough level of correction that we can maintain it just through nightly bracing and a walking brace during the day. Her club foot is derived from the nerve damage from her spina bifida, so she will likely always require some sort of brace to maintain correction and help with mobility.

Developmentally, she is doing great. She’s saying more words now (shoes, buh-bye, hi, dada, Flash -the dog, book, ball) and she’s really attaching to Kevin more. We are just starting to see the beginnings of her turning to him to meet her needs and not just for play. Her favorite thing is doing Ring Around the Rosie! It’s so cute! 🙂 She’s sleeping well overall and eating okay although we’d like to see her start to gain some weight. She had lost some at her last visit and if they measured her right in China in April she hasn’t gained any weight since then.

As the summer wraps up and school begins we are feeling the time of transition coming on in a lot of ways. Definitely pray for us if you think of it. We can’t always share everything publicly that is happening, but there are a couple of bigger things happening that are definitely pushing us to keep our eyes on God and grow our faith.

This is our girl

International adoption in China has changed dramatically over the past 5-10 years. I shared about this when we were in process for James because I was asked so often how we could so “easily get a boy.” One of the major ways that it has changed is that it is now primarily a special needs program, meaning that the majority of children placed for adoption have at least one identified medical or developmental need. These span the spectrum from a repaired cleft lip/palate, hearing/vision loss, limb differences, complex heart disease, spina bifida, cerebral palsy to global development delays and many, many other needs. In some cases it’s a mild form of these things and in others it’s more severe, or there are multiple conditions.

For this reason, the majority of families go into this process knowing that they will have to be open to at least one of these needs. The list of needs that we were open to in our first adoption was fairly conservative – at least to us. Things like hearing loss, cleft lip/palate, limb differences, hemophilia, etc. We felt comfortable that we could provide care for these needs and manage the impact within our family. But having walked the road of a medical need with James, and the road of behavioral needs with our other son, and having witnessed the amazing stories of so many other adoptive families who’ve brought home children with much more significant needs, we knew that our list would be longer this time. Because we’ve learned that by God’s power, we are stronger than we knew, and every moment of hard work is absolutely worth it.

So, our road to Emily was a little bit different because instead of signing up with an agency and then waiting for files or only looking at their list, we sought out our daughter first by watching advocacy pages on Facebook and advocacy websites and looking at files from a variety of agencies. The needs were a factor as we looked at files, but before we ever saw her file, we saw her face. We saw her personality as she bopped up and down in her crib and we found ourselves laughing and smiling as we imagined her looking up at us from the crib in our home waiting for us to hold her. We saw her need for a family. We wanted her.

But…she wasn’t available. Other families were reviewing her. We thought the door was closed. So you can imagine our excitement when the agency rep came back to us and said that her file had not been locked in and we could review it and consider her! We watched her videos again and were amazed because you would never know that this bouncy, happy girl was created with a medical need that often means a child has a lot of difficulty with gross motor development. As she crawled around eagerly on the play area floor, chasing a toy, we found ourselves cheering her on. This little one that wasn’t letting a spinal issue stop her from doing anything. And as she held on to that beach ball, in her FANTASTIC Celine Dion shirt, we knew we had to learn more because we really, really hoped she was the one.

Fast forward several days of intense conversations and research and our pre approval paperwork and agency application was on its way! We had learned that Emily has an official diagnosis of tethered cord syndrome and clubbed and shortened right foot. A tethered cord occurs because something is tethering the spinal cord – something is pulling it down. (This can actually develop in adults later on in life and the rate of adult diagnosis in the US is rising significantly.) In Emily’s case, what is pulling it down is a benign fatty tumor in the base of her spinal cord. The International Adoption doctor at CHOP believes it is what’s called “Lypomeningcele.” It is a form of spina bifida that occurs in the womb. In all likelihood, it’s impacting her hip and is what caused her leg to be shortened and clubbed. “Spina Bifida” can sound really scary to people and we understand that. It was pretty much all new to us. But it was not really scary. Why? Because of a little girl named Sydney.

Sydney was three years old when we had the privilege of teaching her Sunday School class for a year. She’s a teenager today (ummm…I feel old!) Sydney was one of four special needs students in our class that year. We had no training, no experience in teaching children with special needs. And at times we felt overwhelmed not knowing if we were doing it “right.” But God was at work even then. Because we will never forget the determined, joyful, spunky little girl that would walk herself into the room each week with the assistance of her red walker, ready to get right into the morning’s activities. Smart as a whip, this little girl never let anything stop her. She kept her family on their toes, determined to keep making progress and never look back.

Could we parent a Sydney? Yes. In fact, we wanted to, and now we GET to.

Emily will likely have minimal issues with things like walking or movement. But we don’t know. Her prognosis overall is really, really good from what doctors at both Mayo Clinic and CHOP have seen so far. She is likely to need multiple surgeries and she’s likely to have them within the first few months of being home. We know a lot, but we also have a lot of unanswered questions. So our first few weeks home will look like a lot of doctor appointments, second opinions, and scheduling therapy evaluations.

And here’s the rest of the story…

Emily, will likely blow right past all the limits and expectations we put on her. Just like her brother.

Emily, may get new diagnoses or they may change. And she’ll still be our Emily.

Emily, will face any surgeries with a family by her side to comfort, nurture, encourage and help. Any time of day, any time of night.

Emily, will be loved and treasured because she is Emily.

Yea, we have a lot of questions. And as waiting parents it is soooo hard to have unanswered medical questions. But the other questions matter more – questions like, what makes her laugh, what does her laugh sound like, how does she like to be comforted, what will it feel like to hold her, does she like being outside, what are her favorite smells, does she like to sleep on her belly or back, what’s her favorite food, what kind of music makes her happy…questions of the heart. Questions that aren’t skin deep. Because that’s the Emily we are bringing home. Not the girl with “xyz” diagnoses. She’s just Emily and she’s already so loved.