Category Archives: Medical Stuff

I still can’t believe it.

It’s truly miraculous to me. Two weeks ago, the surgeon made an almost five inch incision down her back. Through all the layers, de-bulking a lipoma (benign fatty tumor) and de-tethering her spinal cord so it could move freely in the spinal column. Shifting her lower spine back into place, and putting the spine back together. This delicate work required meticulous concentration so as not to create further nerve damage. A neurophysiologist monitored nerves throughout her body with tiny needles placed in her feet, skull and other places. Ultimately, the lipoma could not be fully removed. They got as much as they could with the precision of a laser. Over four hours later, they closed her up with meticulous internal stitches and sealed it shut with Derma Bond, and brought her back to us.

Infection, spinal fluid leak, nerve damage…the potential complications and risks were truly scary. How would we keep her laying flat for 48 hours post-op? Would she be in awful pain? How would we know – she has such little language and communicating about pain is really hard. What if we went all the way home and THEN she got an infection? What if the concern they had about possible new nerve damage in her left foot meant we’d now have two feet requiring treatment? What if her bowel/bladder issues got worse after this?

Two weeks later and I am in in total and complete AWE of the healing God has allowed for Emily. Her incision site is stunning to me. I don’t think they could have done it any better if they’d had the best plastic surgeon in that OR. Not only has it healed without any complications, but it’s healing in a way should leave a very minimal scar. To look at it, you would think the surgery was several weeks ago. We are so incredibly grateful. The surgeon, and all the doctors did an amazing job. She’s done so well, we didn’t have to go back down for the scheduled follow up appointment this week!

The other procedures yielded good news overall. She’ll need some additional urological procedures in the future, but some of the “worst case” scenarios were ruled out!

She will have a follow up MRI and Urodynamics in late January/early February. She begins weekly serial casting of her club foot January 3rd which should continue for about 6 weeks. We had hoped to start this right away, but after her surgery was delayed two weeks, we orthopedist doesn’t have availability until January. In the meantime, she has a PT evaluation in early December and we’ll have to repeat some blood work to rule out a couple of things that flagged in the first round. Nothing we’re significantly concerned about, but need to rule out.

It is a relief to have this surgery behind us. To have the unknowns answered and to see her almost totally back to herself is truly unexpected. I was honestly prepared for a lot longer recovery and to have at least of the common complications. I look at her back, I watch her move, and I still can’t believe it. She’s incredibly strong, we are incredibly blessed, and God is so gracious.

One Month Together

One month ago today we met Emily and became a family. In so many ways it feels like much longer because it feels like she has been with us almost all along. Her personality is such a great fit with our family and she brings us incredible joy. We love being able to make her happy and know that we are meeting her needs for unconditional love and a forever family and ultimately to show her the perfect love God has for her.

We landed back in the US 3 weeks ago today and Emily has been transitioning really well. She sleeps in her crib in her room for naps and at night. She usually goes down pretty well, but occasionally wakes up once at night or needs me to stay with her a little longer in the room. She wakes up happy and ready to eat and play. We get to celebrate her second birthday this month! We are so, so thankful that she didn’t have to spend any more birthdays without a family to celebrate her life. She is curious, funny, determined, smart, and brave. She’s actually a little daredevil – the higher and faster the better for her! She loves to go outside, go in the swing, play in the sandbox, ride in the Power Wheels Jeep with James, and be silly. She LOVES water and swimming – we have to work to keep her face out of the water actually. She’s even settled in with our big dog finally. She tries to get close to him to pet him now! She is still nervous about Kevin picking her up, but she really enjoys playing with him now and isn’t upset if I’m not in the room with them. Their bond grows by little bits each day and we know it won’t be long before she’s ready to fully embrace him.

Her language is delayed due to institutional life and the change in native language. But in just one month we can see rapid progress in her receptive language understanding. Her expressive language is very limited, but she has been saying “Mama” for awhile and just in the last week she’s started saying, “Buh-bye”, “Nigh-Nigh”, “Da Da”, “Eyes” and tonight she is trying to mimic “One, Two, Three”. She loves to make her own little “woof” sound to imitate Flash which is adorable. The International Adoption Clinic gave us some great guidance for how to help her speech and language improve. They would like her to have about 50 words in another 4 months with some 2 word phrases. If she doesn’t they’ll reassess for possible speech therapy.

We have already had several doctor appointments this first month. As we shared a few months ago when we were in process to adopt Emily, she has a tethered spinal cord which is caused by a lypomeningocele (a form of spina bifida) which seems to also be impacting her lower right side -hip, leg, foot. It also likely impacts her bowel and bladder function and we’ve been referred to a pediatric surgeon specialist to evaluate that issue a little further. She had a full cardiology workup to confirm that her PFO had closed and that the murmur they heard was innocent. Everything turned out fine for that, so she now has a sedated MRI for her spine and pelvis later on this month. In two weeks we will be going to Baltimore to see a specialist in club foot at the same Limb Institute that James goes to. This is a critical second opinion because the orthopedic doctor we saw at CHOP was not a good experience (I’m being very generous when I use those words) and because this Doctor has decades of proven experience. We’ll also be going to DuPont Nemours in Wilmington, Delaware for a second opinion on all of the spinal, urological and orthopedic issues during the first week of September. We had heard great things about DuPont from many families and the Orthopedic doctor there did her fellowship under the doctor in Baltimore. We would prefer to work with a centralized team of multi-disciplinary specialists in one location. But we also need to go with who we feel most comfortable with and believe is the best for her. I felt really good about the Urologist that we saw today. He would work with us for the long-term in managing her bowel/bladder needs and thankfully he works out of a CHOP extension campus that is less than 40 minutes away. We are also hopeful that whatever orthopedic specialist is the lead for her care that they can utilize the therapy hospital we go to for any of the casting and bracing she may need.

Because she is adjusting so well in such a short time it can be easy to forget that this is a big change on everyone else in short time. Please keep praying for the family dynamic. I am looking forward to getting into a routine with school starting although it’s going to be an intense year as we anticipate at least 1 surgery for Emily plus the ongoing orthopedic treatment, and starting the next series of surgeries for James’ other arm. For now, we are trying to go one day at a time and I am super thankful we came home to a summertime schedule that is not nearly as demanding as the school year. A year ago at this time, another adoption wasn’t even on our minds. And here we are with this amazing little one that brings us a very special type of joy. It gives us strength as we face whatever may be ahead.

James Update

James will be 6 weeks post-op on Wednesday. Overall, things have gone well in his recovery, healing and rehab therapy. The external fixator frame will be on for several more weeks and during that time our primary task is to keep the arm clean, the incision places stable as they heal, and to stretch and massage his fingers and arm three times a day to increase flexibility, range of motion and strength. He also does some exercises to make sure his upper arm and shoulder area remains strong. We’ve been doing therapy with his OT once a week but we’re going to go twice for the next few weeks because she does such a great job working with him and he needs a little extra help right now.

Pin site infections are very common with external fixators. The surgeon sent us home with an antibiotic prescription with three refills – that’s how common they are. We saw some of the signs of an infection developing this weekend and last night we started the antibiotic. This morning his OT confirmed that he definitely has an infection going on. So, please pray for swift healing and comfort. It limits what we can do in terms of the therapy because he is so sensitive right now. Thankfully he’s not showing signs of high pain or fever.

James had the additional complication of significant blistering immediately after surgery. Basically, his vascular system could not absorb all of the swelling so it pushed up through the top layers of the skin. The largest and deepest one was on top of his forearm, but the entire incision line along his wrist blistered and there were multiple other spots as well. Initially it was rough because they were big and fluid filled. But they have dried up, and scabbed and are pretty stabilized. A couple of the little scabs have fallen off. I treat them with betadine “painting” daily to try to prevent infection. It’s likely there will be some scarring. The infection has caused renewed swelling and his OT saw a couple of places where new little blisters are forming. It seems his vascular system functionality is just on the weaker side for these types of issues and this is in line with something called TAR syndrome. TAR stands for Thrombocytopenia Absent Radius Syndrome. It’s a genetic syndrome and James has several signs of it – completely absent radius bones, but thumbs present, lactose intolerant, frequent nosebleeds, weakened vascular system. Low platelets are also common, but many kids grow out of that and James has not had an issue with that. We saw a pediatric geneticist in January to begin the process of testing. Our insurance company initially denied coverage for the testing. Another China adoptive mama whose daughter is from the same province as James, and has the same condition, told me about a lab that covered the testing for their daughter. The geneticist’s staff reached out to that lab and they are going to cover the testing for James! However this does mean another blood draw. We had hoped to do it concurrent with his next round of post-op bloodwork in the hospital, but they barely got enough to do what they needed for the routine post-op stuff, so there wouldn’t be enough for this test too. It barely filled two infant size vials. So we are going to arrange to go back to the PICU nurse at the children’s hospital nearby and we’re hoping Child Life will help us get the vascular team to come in with their ultrasound so they can help the nurse locate a good vein and get it over as quickly as possible. It took three adults to hold him down last time and it was still a struggle. You can imagine the trauma that is for him.

We are headed back to Baltimore this week to see his surgeon for X-rays and a checkup. We have been turning the bolts on his fixator frame one full millimeter every other day. Essentially, this is stretching the frame and his soft tissues out so that the bottom of the wrist bones and the top of the ulna bone get aligned properly. The wrist bones settled back a little too far down the ulna which is very common with children who don’t have this surgery until they are older. It would’ve been less likely if he’d had it done as a toddler. This has contributed to some of his nerve discomfort and needing to take Oxy Codone each night to sleep. We’re hopeful that things are in place now so we can discontinue the turns and that he’ll feel less discomfort in the weeks to come.

If you stuck around long enough to read all the way to the end – thank you! I know this was long 🙂  Thanks for your prayers and support. We look forward to sharing a picture when his arm is all healed up. For now, we are grateful for how far he has come and what a trooper he has been in handling this tough stuff. We are excited for the day when the frame and the final cast come off and he can enjoy working with his new arm and hand!

 

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.