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.

Play Time

One of the many challenges for an infant with any kind of restrictive muscular disease is finding motivation to explore the world around them. Fortunately, Liam has been very motivated since birth to seek and explore his environment. In the beginning, my husband and I were instructed to give Liam therapy in his hands, arms and shoulders during feedings to loosen up the tightness in his muscles and his joints. Regular therapy sessions have instructed us on different approaches to take to maximize his range of motion. 

It has been one of our goals to teach Liam how to move and play independently, therefore providing himself with therapy while having fun with it. As he gets older (he is now 8 1/2 months old), he becomes more alert and aware of everything around him and what he wants to do with it. No matter the obstacle, if he wants to do something, he will find a way to do it. An obstacle he faces right now is his special boots with the Ponseti bar. But even with this device on, he plays and moves. Currently, his favorite mode of transportation is rolling over onto his belly and continuing onto his back, repeatedly. In a blink of an eye, he is across the living room moving this way, Ponseti bar and all!

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