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

Pool Therapy

It's hard to think of anything more relaxing than going swimming on a hot summery day. That is what Liam did over the past weekend for the first time and he loved it! We have a little float for him to recline in and go with the flow. He was kicking his legs to paddle himself along and even started smacking the water with his hands to cause little splashes in the water, all while shrieking in excitement and laughter. It's safe to say I know what where Liam will be spending a lot of time this summer!

 I can't get enough of these pictures of Liam in the pool, so I have been sharing them for all to see this amazing boy enjoying the pool. Over the summer, we plan for his therapists to do their work with him in a wading pool. The water does wonders on his joints. He doesn't get upset or fussy when we work his muscles in the water. It also certainly helps him sleep good!

Work and Play

It seems we are always looking for new ways to help Liam increase mobility in his muscles and joints. Well, it turns out, that over the course of the last few weeks, Liam has shown us a thing or two in what works best for him. When his physical therapist introduced him to a toy that he can activate by sitting and pressing a button, he was thrilled and shrieked in excitement.

Overnight, he seemed to be sitting up so much better on his own. Keep in mind, that though he is 10 months old, he is still struggling even with prop sitting. This is due to the awkward positioning of many months worth of castings on both of his legs. He has not been able to work to this milestone without a major obstacle. In the meantime, we have worked on other milestones, such as rolling front to back and back to front which he has mastered.

Most recently, we have been trying to find a way for Liam to effectively play with his toy laptop computer. It has these wonderful buttons that he loves to press. However, the restrictions in his elbows, wrists and shoulders prevent him from controlling the toy. Then I remembered we have a little stool that converts to a little chair. We use it as a makeshift desk for his little computer. Now, for the first time, he is motivated to press the buttons with his individual fingers rather than the flat side of his hand.

Can't you see I'm working here, Mom?

This little guy is going to be a computer whiz like his Dad!

We are also seeing a lot of increased range and mobility in his shoulders. We can lift his arms pretty high and open them up pretty wide. But the distance he can stretch himself is a different story as he is challenged by the shortened tendons in his joints. But as he continues to explore his environment and play with his toys, the tendons stretch and loosen and create less of a challenge each day. Also, of course, aggressive therapy plays a major role in his continued success.

Playtime and Other Things

Just as the last several months, this past month has flown and now we are few days away from Liam's 10th month birthday! I have been witness to a steady increase in his alertness and perception of his surroundings. In therapy, Liam has been introduced to toys that create a "cause and effect" scenario. For example, when he presses a button or a switch, the toy will make a loud cheerful sound or release another toy such as a ball. His success in activating such toys is lately met with a delighted screech. It's so unexpected, I haven't been able to catch it on video yet.

Further to Liam's success with his toys is that he is even more motivated to learn to sit upright unsupported. This is also somewhat unexpected. After many months of castings on both of his legs, we expected Liam to be further behind schedule in this milestone. In this, he is proving to be an overachiever and in a good way!

And speaking of milestones, we have accepted that Liam will likely learn to walk without ever crawling due to the restrictions in his elbow and shoulder joints. However, he is rolling around all over the place. So we now have a large play mat for him to roll all over to his heart's content. He loves it!

As a last note regarding toys, he particularly favors any that he can easily get a grip with his hands as pictured
below. His favorite is a rubber ball with holes all around it so he can hold on to it and move with it. It provides an incredible stretch to his fingers, hands, wrists, elbows and shoulders that he does all by himself! So, to any others out there who know children with arthrogryposis in the upper extremities: this toy should be high on your list!

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