Myself, my husband Wayne, and our wonderful little boy Liam would like to express our sincerest gratitude to our family and friends. Thank you all for providing a shining beacon of love, support, and prayer every step of the way. Being new parents seems challenging enough in learning the ins and outs of caring for an infant. Not to mention those times when a baby cries and you just can't seem to figure out why. I'm not going to pretend this added challenge to new parenthood has been easy. It will likely be one of the most difficult experiences in my life. But through the love and support of our family and friends, and the positive impact it is all having on Liam, I am encouraged daily to keep going strong.
Furthermore, I would like to thank everyone who reads this website. You are encouraging me to share our experiences and offer hope to those who need it. From day one, I have received requests from some of Liam's care providers to either start a support group or lead one for arthrogryposis. They have been inspired by what they describe as a positive outlook and attitude, the motivating force behind Liam's desire to succeed. Where other parents and families might feel discouraged, we push away those feelings and plow on through with all of the positive reinforcement we can muster. I hope this blog proves to be a good start in providing support where others need it. I feel a little overwhelmed with the idea of leading a support group since I am currently just a pupil. But your support to me as a reader of this blog is helping me on my mission. And for that, once again, I thank you. Sincerely. Thank you.
5 comments:
God bless you and your family.
I have the utmost faith that God will carry you through.
Your son is beautiful.
Thank you for the work you put into your blog. My daughter is 7 months pregnant with a little girl who, at the 20 week scan, was predicted to have arthogryposis. I've had to practice with that word...
Right now we know only that the upper limbs are affected. Time will tell what else. I am trying to carefully educate myself about amc, without unnecessarily scaring myself with worst-case scenarios. Your positive outlook, and the photos of your smiling boy, are reassuring reminders of children (and parents) not being defined by what is wrong, but of who they are.
My daughter also has a 7 year old little boy. They live in England, and I will be helping out in the beginning. I am in Maine - they are in England...so hard to be far away! Thank you again for your posts.
I am so happy my blog has inspired you! When Liam was first diagnosed, we were also told that his upper limbs were affected, but whether anything else would be was completely unknown until he was born.
Liam was born with clubbed feet which very commonly occurs along with arthrogryposis. So far, all of the orthopedic intervention Liam has undergone has been to correct his clubbed feet. He has been prescribed "aggressive therapy" to treat his arthrogryposis. In fact, this is the worst case scenario we were given upon his diagnosis: possibly years of therapy. I wouldn't have been told that unless I had asked! So of course, I was up to that task. He receives therapy in our home 4 days a week in 45 minute sessions.
One other thing Liam's orthopedist has said that I think is worth mentioning is that every one of his arthrogrypotic patients 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!
With all of that said, I have no doubt you can expect your Granddaughter to be just fine. Life is a journey for everyone, if in different ways. I wish you all the best. The most difficult part of it all will be living so far apart. Please know that you have my love.
Hi Lisa,
Thanks so much for this blog. Our little boy, also our first child, will be born in June with bilateral clubfoot and an underlying likely diagnosis of distal arthrogryposis. We're so grateful to have had advance time to research and prepare ourselves emotionally, spiritually and mentally for what this next phase could hold. I've been hungry for stories from other parents about the practical, day-to-day aspects of therapy, interventions, castings, etc. As you know, there's not much out there! It's been great to read up on Liam's progress and see how powerful parents' belief and support of such wee ones can be. Thanks so much!
Jessica
Hi I found your blog through a search and I am now following it. Thanks for sharing Liam's story. He is so cute and I love how he has made real progress. This is an inspirational and informative blog.
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