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.
The story of a boy named Liam and his journey in a life with arthrogryposis.
Wednesday, July 31, 2013
Saturday, July 20, 2013
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
Friday, July 5, 2013
A Year in Review
1 day old |
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 |
(This blog is very unforgiving with picture placement. Apologies for the mishmash).
1 month |
8 weeks |
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