So yesterday Jack underwent Gtube surgery as he begins to lose the ability to chew and swallow. By far one of the hardest transition as Jack has progressed in this disease over the years.
He has tolerated the liquids and currently he is receiving formula feeds. His body, so far, is doing pretty well. He definitely had a sleepless night of trying to get comfortable and not getting there. He decided to wait till sunrise to shut his eyes while I cleaned his bed for the 4th or maybe 5th time.? I have witnessed a lot of stomach contents that leaks that I just had no idea I would be viewing. And now on a regular basis. Thankfully I was so tired it didn’t phase me.
Today we have our training on care, usage, and troublshooting with his new medical devices (Mic-Key button, tubes, pumps, bolus, syringes…). And hopefully he will be able to taste some food by mouth today. His blanket has not been cutting it. Jack loves food and it’s so heartbreaking to neglect him of it. Thinking pancakes, sausage, strawberries and yogurt will be ordered up, his fave foods!
I like to think he understands all of this, that he walks so closely with his God that it just all make sense to him. And as far as my journey with him, I continue to be amazed at his bravery, strength and continuous laughs during Disney movies (the best). Moms broken heart repaired by a single smile or giggle.
Thank you all for the prayers and please keep them coming as he heals and I adjust.
Juliet continues to share her journey, “my brother has a YouTube. And I get to feed him with the YouTube!” She’s amazing.
Jamie thinking of you Jack, Juliet and your hubby on this journey.
Jack is a strong little man !
Hugs and prayers coming your way
Thank you Anne.
Just want you to know that I am keeping Jack and you all in my prayers. Sending love and hugs to Jack and to you!
Thank you Paula.
Just love those photos of beautiful Jack when I can’t see him in person!! Pancakes, sausages, strawberries and yogurt sound pretty darned good to me right now too, LOL! Loving you like crazy through this huge transition. XOXOXOX
So glad Jack has his sister to help with the YouTube!! Only an innocent child could offer the humor when needed the most! Pray that God continues to have his angels watching over your angels!! Our children are our most precious gifts and need our love thru all their journeys!! Hugs to you all… And hoping you can find some “Merry” at this time of year!! Bonnie and Steve K.
Jack is frequently on my mind and in my heart as is your entire family. May God continue to bless you with his grace, peace, and love as well as a wonderful sense of humor. Will continue to pray for all of you.
Thank you Mindy – God is good!
Our thoughts are with you and we hope Jack is doing okay after the surgery, MPS II boys do love to eat. Our son has Hunter syndrome too, severe form, he’s on ERT, but he didn’t make it onto the UK intraceth. trial), now aged 9.
I missed you today at bible study. I’m happy to hear that things went well today, at least under the circumstances. Best wishes for you, your entire family, and most of all, Jack. Hope to see you soon.
PLEASE CONTACT DR. PHIL & THE SHRINERS —-THEY HAVE LARGE RESOURCES AND MAY BE ABLE TO HELP YOU WITH YOUR SON’S PROBLEM
GIVE THEM A TRY. DO WHATEVER IT TAKES LEAVE NO STONE UNTURNED AND GOOD LUCK TO YOU !