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.

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!

Road to Progress: Part Three - Success!

Liam is 8 months old today. And to celebrate, his casts were removed for good! I know this is a much anticipated update. Believe me, I've been anxious to reach this point too! Liam's surgery has been a great success and now I can give the update of updates the occasion warrants. First of all, let me preface by saying this has been a difficult journey and we are certainly blessed with a strong and motivated little boy.

Day of Birth

We are also blessed with the love, support, prayers and encouragement of many and for that we are eternally grateful. We thank God for all of you and for giving us this wonderful baby boy. We are greatly thankful for the expertise and care Liam has received from his orthopedists, nurses and his therapists. If not for the technology and treatment available  today, Liam would not be where he is now.

Day of Birth

Where is he now? Free of the burden of any further surgeries. That's right. His orthopedic doctor confirmed that given the progress that Liam is showing through his treatment and therapies, he does not see any need to intervene any further with surgery!

Waiting for final cast removal

Waiting for final cast removal

So here we are, 3 1/2 weeks after his last Achilles tendon lengthening procedure, patiently waiting for the last casts to come off. These heavy things (probably about 1 lb each) had been on his legs since immediately following his surgery. He is very strong!

Immediately after cast removal

Liam's doctor successfully achieved the 90 degree angle he was aimimg for with this last surgery. Going into the surgery, the doctor thought he might need to insert pins in Liam's heels to help with the lengthening. If that would have been the case, then Liam would have needed to be placed under  anesthesia again. After the rough recovery he endured from his surgery, I am thankful this step was not necessary.

Enjoying his new freedom

We may have reached a break, but the journey is ongoing. Liam will need to wear special boots with a  Ponseti bar between them to maintain the new angle in his foot. We are instructed to keep his feet in the boots for 14 hours a day, most of which should be at night while he sleeps. This is expected for at least 6 weeks at which point his doctor will determine if we should continue with the boots.

Boots with Ponseti bar

An Update

Liam is scheduled to have a second surgery to lengthen his Achilles tendons on Monday, February 25th. He will wear casts on both legs for 4-5 weeks straight without change. When they come off, he'll be in special boots with a Ponseti bar to help him maintain the ankle length while they continue to heal in that position.Your prayers and support, as always, are appreciated.

Super Baby

It's been a little hectic lately scheduling Liam's pre-op exams, surgery and yet still fit in therapy sessions. I will keep posting updates as they come.

First casts with new orthopedist