An Unexpected Turn

I would like to take a moment to thank you all for your love, support, thoughts, and prayers. We felt them all last Thursday when we made our trip to Nemours duPont Children's Research Hospital where Liam was evaluated for his candidacy to receive assistance from their Wilmington Robotic EXoskeleton (WREX) device which would provide him with freedom of mobility in his arms so that he could easily feed himself, hold crayons and draw, and wrap his arms around our necks.

Liam was not considered a candidate for the robotic arms at this time. This turned out to be unexpectedly great news. The doctors and therapists (five in all) that evaluated him agreed that he shows so much potential in the progress he has made so far, that they are concerned that the WREX device would only hold him back. It was recommended that we continue the aggressive therapy he has been receiving since birth. They offered tips and advice which would accelerate these efforts. They asked us to keep them updated with photos and videos of his progress and perhaps sometime in the future, he will be considered again for his candidacy for the WREX device once he has reached his expected potential.

In the meantime, the doctor, who is a specialist in Arthrogryposis, and the occupational therapist on her team recommend that Liam gain as much passive motion in his elbows as possible. This means that they want him to be able to bend his elbows a little more on his own. The occupational therapist fashioned an elbow splint to be applied to Liam's left elbow while he sleeps so that it will start bending as well as his right elbow currently bends.

While we are on the subject of great news, the physical therapist examined his use of his new ankle foot orthotics (AFO) and determined that he is ready to be walking any day now. She predicts that he will be walking in them, unassisted, in two months! Before the physical therapist saw him, the doctor had just suggested that he may need a cumbersome leg brace which would reach from above his hips to his feet and help him develop walking muscles over time. Thank goodness that won't be necessary! 

The physical therapist also recommended we no longer use the supine stander which is pictured in an earlier blog post, as at this point, he needs to work on balancing on his own two feet. Furthermore, she suggested we cut holes in a pillow case, put Liam's legs through the holes and let him walk, catching his falls with the pillow case so he can learn to balance himself. Alternatively, we could use a pair of denim jeans for the stronger, sturdier fabric. My husband's stepdad suggested we use Liam's overalls! 

 You can see how ready he is to take off running! 

We certainly feel our trip was worthwhile. Liam was evaluated by doctors and therapists specializing in Arthrogryposis. They took one look at him and knew everything about him and his needs before they examined his joints and body. This is what they do and they are exceptional at it. They would like to continue seeing Liam for treatment and future surgeries to loosen the tendons in his elbows and wrists. They also asked us to consider returning for therapy services on top of his existing therapy services. They see what we see in Liam. Hope for his Arthrogryposis.

However, we do not currently have out of network coverage with our health insurance and continuing treatment with these specialists is beyond what we can currently afford. We are discussing strategies and options at this point and are open to suggestions. We ask that you continue to keep us in your thoughts and prayers. Thank you all again.

Using Technology

It sure has been quiet around here, hasn't it? Well, we're still here and Liam is growing up and proving to us each day what he can do. So where do I begin? To start, here is how he is eating his food these days.

Snack Time

We are still working on his arms, loosening the tendons in his elbows using therapy, so that someday he might be able to bring a spoon or his fingers to his mouth. He's almost there, but he has a little way to go. In the meantime, he's figured out that he can pick up finger foods with his mouth and this is the only way he wants to eat now. We can help him if he has trouble picking something up, but only if he's tried to pick it up himself first.

Interestingly, a couple of my friends sent me this fascinating article. It's a beautiful story about a little girl with arthrogryposis who is fitted with "magic arms" to help her bend her arms so that she can bring food to her mouth and draw with crayons for the first time.

Here is another amazing article about another little boy close to Liam's age with arthrogryposis. He was also fitted with an exoskeleton to help him move with greater ease.

So how does this work? A huge obstacle for people with arthrogryposis is gravity. As described in this medical journal entry about arthrogryposis in the elbow joint, strong  flexors in our forearms allow us to effectively bend our elbow joints against gravity so that we can easily touch our noses, feed ourselves, pick up objects above our heads, and so forth. However, in the case of  patients like Liam, who display arthrogryposis in his arms, these flexors are weak and his tendons in the joint are tight, so his elbow does not bend with ease, thereby creating a struggle to resist gravity's pull to the center of his body.

To remove the obstacle of gravity from the equation, a device called the Wilmington Robotic EXoskeleton (WREX) was designed using 3D printing technology and has been undergoing clinical trials. I am currently corresponding with the responsible research hospital in hopes to have Liam fitted with a WREX device.

In this correspondence, it was brought to my attention that this blog lacks videos displaying Liam's range of motion capabilities in his arms with or without assistance. This week, I kicked off a Youtube channel where I will post videos from time to time, such as the one shown below, of Liam's abilities through his therapy and playtime sessions. Everyone is welcome and encouraged to subscribe to the channel.

Pending Breakthroughs

I realize it has been a long time since I've posted any updates and it hasn't been for any lack of progress in Liam's developing independence. He has been busy these last few months as we set the course for his next milestone breakthroughs. In September, his therapy sessions were renewed as per a bi-annual evaluation requirement. Last month, he was measured and fitted for a new supine stander which will be customized for his unique needs. 

However, Liam has been showing a lot of determination to learn to stand on his own two feet. He really wants to take off running especially when he sees other kids close to his age taking off. I decided to put together a little riding toy to see if it would encourage him get used to the idea of using his legs. It came with rockers to attach to the wheels to start off as a rocking toy, but Liam didn't care for that function. So I took off the rockers and here is the result. 

Now, even his Physical Therapist questions whether he will even need the customized stander by the time it arrives. Even during therapy sessions when she stands him on his feet, he no longer resists and instead continues to instinctively push down into his feet increasingly bearing more of his own weight through his legs. 

Practice standing in Physical Therapy (look at his arm bending!)

To further add to the topic of Liam's independence, we are also seeing much more use in his hands and arms. He has even started to bend his right elbow independently! In response to this breakthrough, his Occupational Therapist has spent the last few weeks designing a customized splint to fit to his elbow to encourage him to use it more. She has also taken one of his feeding spoons and creatively applied a combination of weather stripping from the hardware store, a tongue depressor, and electrical tape to fatten up the grip and lengthen the handle so that Liam can attempt to feed himself. For now, we are working on getting him accustomed to the elbow splint so that he can get more range in his elbow before we tackle the self-feeding obstacle.

Bending his elbow! (He's only crying because he was cranky. He gets this range in his elbow by himself).

Customized elbow splint.

Playing with the splint on.

What's New?

You're all familiar with the saying "no news is good news," right? This certainly applies to Liam currently. Next week, we return for a routine check-up with his orthopedic doctor for the first time in 4 months! Why the exclamation? Well, it's pretty exciting that we have not needed to see this specialist for so long, considering the first 8 months of Liam's life meant weekly visits for cast changes and two separate surgical procedures to his ankles. We are all certainly blessed!

Liam isn't walking or standing on his own yet and we are still working on his mastering sitting upright unsupported. However, the stander, mentioned in the last post, has worked wonders in strengthening the muscles that will help him to stand.

Initially during therapy, Liam's physical therapist would stand him up supported against a couch or ottoman and try to help him strengthen his leg muscles in that way, but Liam would just scream and cry. After three 15-minute sessions in the stander, we tried standing him up against the ottoman again and he instinctively pressed his heels into the ground and stood (with support) tall and proud as though this was what he was born to do. The stander has also helped him to enjoy his ExerSaucer more than ever, giving him more strength in his knees and ankles to bounce around.

Also, so as not to leave anything out, Liam's arms and hands are still making good progress. He uses them more than ever to play with his toys and reach for things that catch his interest. Lately we've noticed him bending his elbows when he presses his hands against our arms. Where there's a will, there's a way!

Making Steps Toward the First Step

Our big boy turned one this month. Though I wrote a letter to him for his first birthday expressing my pride in him, I still find it difficult to sufficiently put it into words. He is a hard worker. He doesn't like doctors and therapists messing with him and making him do things with his body that feel uncomfortable to him. But I think on some level he really does understand that he is deriving benefit from everything he has gone through because he tends to maintain a tolerance that I find myself envying.

His newest challenge is in the form of a "supine stander," which will strengthen Liam's legs and teach him to become more comfortable with standing on his own. As you may recall, his legs had been in and out of casts (Ponseti method) for the first 8 months of his life. The primary objective of the casts was to straighten out his clubbed feet. They also served to initiate mobility in his ankle and knee joints which gives long-term benefit to his arthrogryposis.

As of now, we are still struggling with Liam being able to sit up completely on his own, unsupported. Also, we don't expect him to learn to crawl because his knee joints are still too stiff to bend fully. Now we are teaching him to stand, using the stander, hoping he will someday take the initiative to stand on his own; and eventually take his first step. Seeing how well he tolerates the stander, I believe we are well on our way in the right direction.

Happy 1st Birthday Liam!

To my Liam Solo on your first birthday,

Can you imagine the feeling I felt one year ago today when our Aunt Patty called from the hospital summoning me to the delivery room telling me “if all goes well, you’ll be new parents by noon?” The day had finally come! Yet how did it get here so fast? I was sweaty and cold all at once. I couldn’t make up my mind! So I put on my brave face and went in.

You see, the whole pregnancy was an entirely surreal experience. I knew you were there, I could feel you. I wondered what you would be like. You seemed so calm. Would you always be that way?

Aunt Patty was almost right; she only missed the mark by two minutes. You were born at 12:02 p.m. The doctors and their students were huddled around you for so long. I only wanted a peek. To pass the time, I maintained forced conversation with the anesthesiologist as I squeezed the life out of your dad’s hand. He suddenly fell quiet and beckoned me to turn my head.

There you were in one of the students’ arms. I met your gaze and I watched your tiny eyes dilate as they gained focus of mine.

While I was pregnant, I must have read hundreds of articles in baby books and magazines that buzzed about the connections a mother makes with her child during the pregnancy. I had thought that all of those article were preparing me; teaching me how not to drop my newborn child or giving some insight to just how many poopy diapers I can expect within a 12-hour period.

What I didn’t expect was for everything I read to no longer have any credence or value the moment our eyes met. Liam, you are my kindred spirit. I knew it the moment I laid eyes on you. I think you knew it too. What’s more, you are also your dad’s kindred spirit. You are so us. You get us and we get you.

God knew to give you to us. Somehow, He knew, in spite of our inexperience not only with parenthood, but also with the present special need, that we would be the right fit for you. He knew the whole family, as amazing as they are and have been, with their words of encouragement and their loving acceptance of you; that they would be the right fit for you.

You are an amazing child, a gracious soul, a kindred spirit; one that brings such joy to all of those that deserve it. My pride fills to burst for you.

Your first year of life has been met with many challenges that many adults have never had to face. Your strength and drive to succeed are incredibly admirable. It just comes so naturally to you. You are in the hearts and prayers of many. I see and feel the love around you every day.

In the face of challenge and adversity, you are a shining beacon that gives hope to the rest of us. Your life is truly a blessing. And may it always be.

Happy Birthday.

With all of my love and heart,

Mom

A Year in Review

1 day old

In just 15 days, Liam will be one year old. Time flew by quicker than I could have ever imagined. This little man has grown and changed so much over the year that I feel the need to review his pictures and videos in awe of his ever-going progress.

Now, in the midst of planning his birthday bash, I felt it prudent to share with you the joy we have experienced in the last year in watching our son blossom from a sleepy-headed newborn with a restricting joint disease to an intelligent and adaptive infant who is more than ready to jump out of our arms into a full run the moment he learns to walk.

13 days old

Going home - 8 days old

Even though his knees are still a little stiff, he is trying to get on them to crawl or maybe scoot around the floor. When he is in the pool, he kicks his legs like a little fish. This little man is going to be mobile very soon. Watch out world!

8 weeks

I hope this post properly conveys just how proud we are of Liam and how grateful we are to all of you who have supported us all in the journey on his road to progress.
(This blog is very unforgiving with picture placement. Apologies for the mishmash).

1 month

8 weeks

3 months

8 months

8 months

6 months

4 months

6 months

7 months

9 months

10 months

9 months

11 months