Riley amazes me every single day. How he has adapted after going through so many changes in his mouth and after his 1st surgery, I'm just so proud of my little guy. I look back at photos from that day of his surgery, sometimes I really don't know how I got through it. It was so many prayers and kind actions from friends and family that really pushed me through. Its been 5 months since his first repair surgery and he is doing so well, but each new phase comes with new challenges. Right now he has an artificial palate that is tacked into the roof of his mouth, and the soft tissue on his soft palate is temporarily closed. So as you can see in this picture, there is a hole between the plate and the tissue of his soft palate. Its made eating solid foods quite a challenge, because he doesn't actually swallow. This is a picture of the artificial palate that he has in right now. The dark spots are the tacks that are holding it in.
Since birth, he has actually used the back of his tongue to push milk all the way back, so that it can simply just fall back down into his throat. Theres no actual swallowing. Now that he is 8 months we have the challenge of getting him used to more solid food. When he starts choking, we really have to kind of let him figure it out, because he has to learn. We have to let him feed himself. Eventually once he has his soft palate surgery in November the muscles will be closed and it will start to make things easier for him.
The few foods that are working for him right now are avocados & bananas. Those are the only things that he has been able to feed himself at this point. As he has his surgeries he'll be able to eat more as time goes on, but we would love any suggestions form other cleft moms for good foods to try until he has his soft palate surgery :)
The few foods that are working for him right now are avocados & bananas. Those are the only things that he has been able to feed himself at this point. As he has his surgeries he'll be able to eat more as time goes on, but we would love any suggestions form other cleft moms for good foods to try until he has his soft palate surgery :)
Over all were so happy with how he is looking! Right now I have the task of massaging out his scar tissue on his lip to loosen it up. Not a fun task, but like everything else we've had to do, its necessary. He's such a tough little guy though, he gets used to everything and all of the changes quick. Right now were just enjoying everything about him and anticipating his next big surgery in November. I hear that the surgery's get harder and harder each time they do it. They are older and wiser every time they have a new surgery, so he'll start to understand whats going on more each time. He'll start to pull his I'V out, kick, and fight more. Its giving me a little anxiety, but just like the first one I know it will turn out ok.
I have been patiently awaiting your blog update. I have been following your blog since March 2015 when my unborn son was diagnosed with a cleft lip on the right side and most likely a cleft palette. Your story has been very uplifing, educational and inspiring. Thank you for sharing your experiences. Our son will be born in August and similiar experiences will be to follow. I would like to get in contact and share more as things progress for us.
ReplyDeleteI can't get over how seriously adorable and handsome this kid is!!! thank you for the update,i've been waiting to hear how he is doing. He is one special little boy and you are one lucky momma to have him. I love you oh so much!! miss your faces!!!
ReplyDeleteLove your posts! Your little guy is looking so great! My son was born in December with a cleft lip and palate. I love reading your posts and being able to relate! My son also has a little hole between his soft palate and the prosthesis. LOTS of food comes out his nose when he swallows, meals are very messy! It's amazing to see how they adapt to what they have to deal with!
ReplyDeleteI didn't realize i was logged into my old account when i posted before, but feel free to check out our blog at laurendjanderson.blogspot.com
ReplyDeleteStumbled upon your blog looking for encouragement, insight anything besides the same facts, something real. I have been balling since your first post. We are at the very begining of all of this, just found out our son has a complete lateral cleft lip and unsure of what else.... We are so devastated but this gives me hope, so scary and painful to see but so beautiful. Your son is so gorgeous and you and your husband must be so strong! Prayers from our family to yours.
ReplyDeleteOh my goodness you are so sweet! I know that it all seems so scary, but that the unknown is even worse! But being married to someone who has gone through it, then having my son, I can tell you right now that you should not be devastated, however, I know that It's easier said then done, but you are going to be soooo in love with your sweet cleft babe and wish that you would have worried less, and enjoyed more. It sounds so weird but I really can't imaging Mac, or Riley any other way. Please let me know if you ever want to talk or have questions about anything ashleyhuish1@gmail.com. Congratulations on your little one!
DeleteThank you so much! We know he will be beautiful and so incredibly loved, even more so with his beauty mark. It's just the fear we have that is devastating... of the pain..the unknown...a million things (as you know). Seems sort of unbearable right now but seeing and reading your family's story has helped so much. I would love to talk with you anytime!
DeleteThank you so much! We know he will be beautiful and so incredibly loved, even more so with his beauty mark. It's just the fear we have that is devastating... of the pain..the unknown...a million things (as you know). Seems sort of unbearable right now but seeing and reading your family's story has helped so much. I would love to talk with you anytime!
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