Hudson's mito affects our entire family, it has changed our lives forever.
My post will reflect our mito in pictures...I really encourage you to read my sweet, dear friend, Heidi' s blog post
Jack and Hudson appear very different in the way this disease affects them. Our pain, our fears, hopes and dreams as moms, are all the same when it comes to our boys. If you want to read a moving and heart tugging post about the reality of this disease, I send you to her platform.
http://jackryan4.blogspot.com/2011/09/awareness-week-surviving-life-with-mito.html?showComment=1316799514998#c4651756399596778123
For us, this is our mito in pictures......
A sweet boy who fights to live on a daily basis
He doesn't have a drawer filled with toys, or markers....but a drawer filled with medicine syringes
There is no cure, so he takes a cocktail of vitamins plus several meds to reduce his seizures...they can't be stopped!
He eats nothing by mouth, he is g tube fed, so we keep a storage of bolus tubes and extensions so he can be fed.
Every month boxes of his "food" are shipped to our home. Amazingly he grows steadily only being fed medical formula through his g tube
A little boys room is to be filled with cars, toys, puzzles and games...Hudson's room looks more like a make shift hospital...all the above pictures are the supplies stored in his room. His suction machine, and a drawer of suction supplies. His pulse ox, and its supplies.
Hudson gets several hours of therapy a week. His muscles are weak and he bares no weight, which could lead to further problems we are trying to avoid
AFO's aid in his feet not getting disformed
Hudson has been hospitalized more times than I can count in his 4 short years.
Hudson sleeps a lot, because his battery is always on empty.
At the end of the day, I wish this wasn't my blog, I wish these weren't my pictures and pictures of my precious 4 year olds life....the reality is...I own this blog, and my baby is so sick I can barely wrap my brain around it because the pain cuts too deep. Our reality is an incurable disease that slaps us in the face daily.
Only by the grace of God, I do what I do to give the very best to my Hudson. Only by His grace, can I find joy in the pain....only by His grace, am I able to blog about the pain.
I pray God has a miracle in store for this mito world we share with so many.
7 comments:
Tears, tears, tears. Precious little Hudson! How I would love to hold and kiss that little man! Your life mirrors mine. Your words are my thoughts, and your pictures, our reality. I know how bad it hurts. My father-in-law told me recently while Talon was in the hospital, that being that God is love, and we know that He loves our children more than we ever could, that even though we don't understand why our babies suffer like this, they must have such an incredible purpose and God an incredible reason for this to happen. One day, we will understand and I have a feeling we will be thanking God for it. Love you guys! Always on my heart!
Krissy and Talon
hugs! and prayers!
Reading this post makes me ache for Hudsy! Poor baby! Then Mom, Dad and brother and sister have to watch him struggle. I can't even imagine that.
Yes, Curtis struggles but nothing like Hudson and your family as a whole.
I pray for him daily and your family, too. Sorry for not commenting more
Shari
I will continue to pray for a cure! Love you guys!
You are beautiful and amazing, and Hudson is so blessed to have you!!! We pray for you guys daily!!
Great post, and super job sharing what it is really like wit Hudson's Mito. Much love, Clara-Leigh
Gavin doesn't have Mito, but his life in pictures would be similiar to Hudson's. You are right, little boys should have draws of toys and fun, NOT medical supplies! Speaking of supplies....where did you get all those syringes?! WOW...I'm jealous! I am always running out of them, and no one seems to carry them around here! I always have the nurses save them when Gavin is in the hospital, so I can take them home and reuse them.
Praying for a miracle for your sweet boy, and the many who are affected by Mito! Love, Big Hugs and Lots of Prayers!!!!
XOXO
...danielle
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