Category Archives: Radial Aplaysia

Round 2

We met with James’ surgeon in Baltimore last week for his 3 month follow up on his left arm and hand, and to discuss the surgical options for his right arm and hand. I had been concerned since his cast came off that his hand seemed to be puffy and swollen continually, and that he was not gaining the flexibility in his wrist range of motion that we expected. It turns out that my concerns were valid and there are a couple of things happening in left hand that will be addressed through splinting, possible minor revision surgeries in the future and monitoring things. His case is especially difficult because of how the severity of his radial aplaysia (Type IV) and his age at the time of surgery. Most children in the U.S. have this done as young toddlers. Basically his ulna bone and the wrist bones (or carpals) are not staying aligned as they should. The ulna is perfectly in place to keep his hand from regressing back to a clubbed position. But that wrist joint area is struggling. The soft tissues are still healing, hence the puffiness, and the bone to his new thumb is actually overgrowing some impacting range of motion in that finger which we want to be in an oppositional pincer grasp with the index finger as much as possible. The contractures in his fingers add another layer of complexity to the case. What this did do however, is confirm that we needed to go with a different approach for the other hand/arm.

His right hand actually has a natural joint that has formed on its own between the carpals and the ulna. Given what’s happening on the left side, it’s clear that we need to utilize that joint and not disrupt it with a traditional Ulnarization procedure. So, the Ulna will actually be broken completely just a little below the wrist, and then rotated several degrees to set it up to eventually be a 90 degree turn, thereby straightening the position of the hand and arm while still getting the ulna into the position that will allow it to prevent the hand from turning in again. The tough part is that this is a much harder recovery. It will require six months in the external fixator with a lot of turns at first and extra X-ray follow up appointments. It will be much more painful as the bone has been broken and the turns always cause a lot of nerve pain. We are hopeful that he will also get a little bit of length from this procedure as the right arm is slightly shorter than the left and of course both are shorter than a typically developing arm.

Because of the longer and more intense recovery time, we wanted to get the surgery done asap so that he could be fixator free for the summer. (We are going to hold off on any procedures on his fingers on the left hand until at least next fall.) But we also have to start Emily’s serial casting which means weekly trips to Delaware in January, so we were really hoping we could do it before then. We got word yesterday that they have scheduled him for December 6th! It’s good timing in that he can get through the initial weeks and enjoy Christmas, and since his surgeon and the orthopedic doing Emily’s leg have a good relationship he is fine with having some of James’ X-rays done there when she’s already scheduled for a visit to help us consolidate trips.

Kevin will stay home with the other three kids this time and it will just be James and I. We’re hopeful to just be inpatient two nights and get home asap. His spirits really lifted last time once he got home and the distraction from the pain was good for him. I wish he didn’t have to go through all of this, and in many ways it’s daunting knowing what is ahead in terms of the extra assistance he’ll need with daily activities, his pin care and treating likely pin site infections, but I’m also glad to get going because we are ready to have these big surgeries behind us and we can look forward to a fun summer together!

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.

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!

 

Day Three

We’re ending what was a very full day with a fever 🙁 He’s sleeping now with pain meds and Tylenol which brought it down about a degree after an hour. We’d expected to go home in the morning. So, we’ll see. We took a lot of wagon rides but he also wanted to try walking! He won’t plant his foot fully with the IV line in it, but he walks on his heel and can tolerate holding his arm up in the Ex Fix for a few minutes. He’s also trying figuring out his balance with this heavy fixator on one side, so the walking was cautious and somewhat hazardous! 🙂
He had a session of OT which he soldiered through, just working on range of motion for his fingers, which are currently pretty swollen and of course there is a lot of tension in his hand right now. They removed all his dressings and cleaned up his pin sites and treated a bone blister that had developed. It looks pretty rough and I’m sure doesn’t feel real great. He is super, super sensitive about anyone seeming like they’re going to come near his arm and by tonight he didn’t want to even try to wiggle the ends of his fingers for the docs and nurses during their regular check-in because it hurt too much.
Earlier in the day we visited the playroom and then got to connect with a family we’ve only met through Facebook to this point. They came all the way from the Czech Republic to have the same surgery here and although he was a little out of sorts from the business of the day, I could tell that being able to see another child who had the Ex Fix who was able to do a lot and whose arm looked a lot better than what he had just seen on his arm, was very helpful. They even brought James a gift and were so kind to us with their encouragement. And James loved that he is a police officer because that is what he tells us he wants to be some day! He was totally worn out by mid afternoon and slept for two and a half hours before we had to wake him. During his nap, the surgeon came by to check on him even after a full day in the OR for him. I can’t say enough good things about this doc – just the best!
Gabi and Kevin and Grandpa came up for dinner and to hang out for the evening. We prepped for going home (aka Kristen going through a bag of medical supplies with Kevin – ha!) and Gabi played games with James.
I’m going to save my other thoughts for a second blog post. It was a day full of activities but I’d had a lot to reflect on tonight. Hoping that tomorrow our little man will wake up strong and fever free!

How to Pray

It’s finally time! The packing is done, the paperwork is done, almost all the prep is done…here we go!

The boys and I had a great trip down to Baltimore. We went through Philly so we could see all the construction cranes, bridges, big boats, airplanes flying in and of course the stadiums! (E-A-G-L-E-S!). This kept us chatting and occupied for half the trip and then I was happy to let them watch Cars while I caught up on my Q Podcasts. (Soooo good by the way – listened to the ones on pluralism, activism and technology & relationships). We’re here now and so thankful that our “home away from home” for awhile is a lot like home because we’re with supportive family. Pre-op is tomorrow at 9:30am and surgery is 8:45am on Wednesday. It should last 3-4 hours, and we’ll have an additional hour of waiting after they’ve sedated him as they prep. They will allow me to stay with him until he’s asleep. We’ll attend a class on caring for his external fixator while he’s in surgery. A child life rep will liaison with us and we’ll meet him in recovery before he wakes up. We’ll be there for an hour or so before we’re moved to his room.

Some specific prayer requests for this week:

1. Good sleep and health for everyone.

2. Safe travels for Kevin & Gabi coming down Tuesday night

3. James is a very difficult stick as many of you will remember from our experience trying to draw blood. Because of this, they are not requiring pre-op blood work (yay!) and they are planning to sedate him first and then do a central line in his neck for the surgery and post-op. He really only has one good vein in one spot and even there it was really hard to work with so they’re hoping this will do the trick. It will be uncomfortable and they’ve told us he may be more hesitant to get moving afterwards, but the alternative could be worse, so that’s the plan for now.

4. Tagged on to that – pray that I would handle the needle aspect of this experience better than I have in the past. I have a bad vasovagal nerve which does not regulate my nervous system well in these situations and I tend to pass out very easily. We know now how to better prepare for that and avoid it but I’m just praying that I’ll have unusual strength and it won’t impede being able to support James when he needs me.

5. For God to guide the hands of the doctors and nurses that they would have wisdom and insight to make good decisions.

6. For the pain management to be effective and prevention of any infection.

7. For our other two as they deal with Mom & Dad being gone and in and out, seeing their brother go through this, and things just being out of their routine.

Thanks so much everyone! We’ll keep you posted!

What’s Ahead

On February 22nd, we will embark on the first of four surgeries that will take place over the course of 18-24 months resulting in much straighter wrists for James, a little longer arm, and new, functional thumbs.

Why did we decide to move up the surgery?

From surgery to final cast removal, we’re looking at 3 ½ – 4 ½ months, which would have meant James starting his Kindergarten year with the external fixator and/or cast. Kindergarten means a regular school bus route with kids as old as fourth grade, and it means a traditional classroom with over 20 kids he doesn’t know and one teacher he’s never met. He’ll require help every time he needs to use the bathroom, and lots of extra watchful eyes on him for safety on the playground, etc. In his current school situation he rides a very small bus with other preschoolers and an aide. There are only 16 children in his classroom with a lead teacher and two assistants. It’s a classroom that has traditional and special needs students. He has already established a trusting relationship with his bus aide and teachers and classmates, and feels very secure in this environment. The classroom is ideal for his needs in the recovery phase. He is just so happy and relaxed on the bus and at school. As we weighed these two scenarios it was clear that it would be much better to move up the surgery so his recovery would happen in his current environment. And, bonus! He can now go to the beach next summer, which wouldn’t have been possible if we waited because he would be wearing the External Fixator and sand is a big no-no with that thing!

What is Ulnarization?

Ulnarization is a surgical procedure that was developed to correct radial aplaysia, the congenital birth defect that James has in both arms. He is missing his radius bone and his ulna is 40% short. However, he has good range of motion with his elbows making him a good candidate for this surgery. (If he didn’t, then the surgery would essentially serve to put his hands farther away from his body thereby reducing function – i.e. making activities like eating even harder)

In addition, he has developed an “ulna dominant grasp” meaning he primarily uses his pinky and ring fingers for function. Before ulnarization was developed the only surgical options available wouldn’t have been a permanent solution for James because individuals with ulna dominant grasp usually regressed back to the bent wrist position. But with ulnarization there is no regression! We’re starting with his left hand since it’s his dominant hand so that he can begin re-learning how to write and other fine motor things that are important in this stage of early childhood development.

Who will perform the surgery?

Dr. Shawn Standard is one of two doctors in the U.S. who does ulnarization. He studied with Dr. Paley who developed it, and he has become one of the “go-to” surgeons for parents seeking a long-term solution for their children. He practices at Sinai Hospital in Baltimore.

How long will the surgery take? How long is recovery?

The surgery is at least a few hours, and during the surgery we’ll attend a class on the external fixator that James will be wearing. The external fixator is a large metal brace that stabilizes everything in place. It has pins that will have to be turned very slightly several times a day and monitored for infection. We are having covers made for it both to protect against infection and just to provide privacy when in public.

We’ll be in Baltimore for two weeks. The plan is for surgery on Wednesday with a Saturday discharge home to Kevin’s parents who live 20 minutes away. James, Andrew and I will stay there returning to the hospital daily for PT and continued assessment. Once home in NJ, we’ll be going to PT 2-3 times a week at the same place James currently goes for OT. They have an aquatics rehab option there too which is highly recommended by the surgeon’s PT/rehab team.

The Ex Fix stays on 2-3 months. Every case is different and we really won’t know until after the surgery. We’ll return to Baltimore to have it removed and at the same time they will do the Pollicization surgery. This is the surgery that involves removing his current thumb and moving his index finger over to be his new thumb. So he will have four fingers but much better function. He will be in a cast for approximately six weeks after this surgery and then there will be more OT/PT as he works with his new thumb.

In preparation for the Ex Fix, we’re having someone make alterations to a lot of his shirts. We’re also looking for an alternative car seat, and thinking through the daily routines of using the bathroom, bathing, eating (he currently uses his left hand), sleeping with an ex fix on his arm, and him just having the use of one hand. He always surprises people with all the things that he can do, but he does often need both hands to do them. So this will be limiting for him and no doubt that will have emotional impact for him.

What about the other hand? Will there be more surgeries?

We do plan to do his right arm/thumb as well. The timeframe on that is uncertain, but typically families opt to do it about 12 months after the previous one. There are also options for further limb lengthening procedures down the line, around 8 years old. But we’re going to take it one thing at a time.

We’ve known this day would be coming for awhile now, so in many ways, we as parents are ready to get started. But James will be terrified. There’s just no way around it. Any child would be scared, but a child with a history of trauma involving abandonment and neglect, just experiences things like this differently. Some of you may remember the trauma of getting his blood taken when we first got home. Well, we have to do that again in the pre-op. So before we even start with IVs and stuff he is going to be panicking. Ugh…

James has seen the pictures below and he knows that Dr. Standard is going to “make his arms straighter” but the concept of being asleep and not feeling anything, or the wounds healing is something that he, naturally, can’t understand or accept. We don’t talk about it a lot, and don’t feel the need to. It’s still months away, and for a child of his age who can’t have a good grasp of time it would be more harmful than helpful to be discussing it this far out.

Between now and then we’ll be busy with paperwork for the hospital, insurance, school, therapists, and hopefully getting some meals made in advance as we’ll no doubt be getting less sleep and everything will be a little “out of rhythm” for awhile.

If you’re curious about what the Ex Fix looks like, and/or seeing a “before and after”, you can check out the pictures below from a friend whose son had it done at 18 months old. Believe it or not, I think James’ arm is actually a lot thinner than this toddler, so it’s really hard to imagine this contraption on him, but the end result will be very worth it and we’re just so thankful to be able to give him the opportunity for better function!

ulnar-polli-before-and-after 13597_940883082699776_8452162649278173592_n