Adaptations

It's hard to believe that in just a few days, Liam will be 9 months old already! Time has flown by so fast and this little boy is growing even faster. He is as fun and as motivated as ever. What a joy to have around! Also, Liam's orthopedist and his Occupational Therapist have said that every one of the arthrogrypotic patients they have worked with have been exceptionally bright and quite distinctly so. We can already see that Liam is very smart too. He had started to say "mama" and "dada" at barely 8 months old! What an incredible guy!

One of my goals is to give Liam the gift of independence. It became easy for me to see now how much we take our independence for granted once I realized that Liam may not even be able to feed himself for several years to come unless we take the necessary steps to facilitate self-care. I have asked his therapists to help me brainstorm ways that we can adapt his feedings so that I can start teaching him how to hold his own bottles and eventually to bring his own spoon to his mouth. He may seem a little young for doing all of that now, but now is the time for him to start learning. 

The challenge that Liam is facing is that his elbow joints are still too tight that they do not fully bend yet. They are getting looser, thanks to the daily massages and regular aggressive therapy he has been receiving. And while we haven't thought up any major adaptations yet, we have figured out how to prop his bottle in such a way that he can hold onto it while giving his fingers, thumbs and wrists the mild stretch that they regularly need. He really enjoys it!

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

Technical Issue

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Benefits of Therapy

When he was just two days old in the NICU, Liam received his first therapy session. The therapist worked very carefully on his tiny, yet exceptionally tight, hands and arms while teaching my husband and me the importance of spending 5 minutes several times a day giving his arms and hands very gentle therapy. She instructed us that it was best to perform these little sessions during feedings so that he was distracted from any discomfort he may experience. He could not move his own arms and shoulders at all. His fingers did not open from their tight fist position. When we tried stretching his arms at the shoulder joint, they would barely lift more than 15 degrees away from his body. Because of therapy, both through our efforts and through the efforts of professional therapists, Liam has come a long way in these 6 months.

Routine therapy has taught Liam how to play independently and has taught us as his parents how to play with him so that his joints may continue to loosen. In my last post, I uploaded a short video of Liam playing with a spoon. None of my family, even my husband, had seen him do that before I posted it to this blog. That is an example of the multitude of daily victories we are rewarded through persistence. Liam is so motivated by his therapy sessions that he spends the rest of the day trying to accomplish a new obstacle he was shown. We reward him by cheering him on, showing him how thrilled we are with each new development. He is an amazing child.

A Modified Approach

Modified belly time

In addition to the serial castings that Liam receives in effort to increase mobility in the joints of his legs, he must also receive aggressive therapy not only to work the joints in his upper extremities, but also to help him reach major milestones that are expected of all infants his age. His joint restrictions make meeting certain milestones more difficult, such as the ever important belly time.

We have had to make several modifications to help him achieve such milestones and while he may not entirely achieve them in the average time window of most infants, his milestones are certainly emerging through the efforts in his therapy sessions. Because of the joint restrictions in his arms, Liam cannot raise his arms over his head or even very far out to the sides of his body (such as in a wingspan motion). But one thing I have learned on our journey so far is that if a baby wants to do something (and Liam is no exception), then that baby will do it. Even though I don't need reminding that he is a normal baby, he does seem determined to remind us that he is just as motivated to learn to function as though there are no restrictions to his movement. In short, Liam is driven to succeed, no matter the obstacle.

Below is a video demonstrating the restrictions in the joints of Liam's arms. He cannot bend his elbows as the tendons are so short, they do not bend at all.