• BeautyWithin
    316
    Hi Friends! May is National Feeding Tube Awareness Month. I share this because my youngest son was diagnosed with Ehlers Danlos Syndrome/JHS in January. After being on an extended "adventure" of ER visits, doctor appointments, testing and multiple hospitalizations, he had surgery to place a feeding tube. He's 5'7" and was down to 96 lbs! We have switched to a much better GI doc. I started this post this morning just to raise awareness for Ehlers-Danlos Syndrome but we won't stop there. After a rough weekend and another visit to his GI doc today we have a plan. My guy has another surgery coming up in the next 2 weeks. Hopefully this will be the final surgery and hospital stay for us. Every day I am inspired by his incredibly witty
    sense of humor. But today was hard, very hard. We would welcome any encouragement and prayers.il13vfz0hh6x926o.jpg
  • Moonlitnight
    1.7k
    I had to look this up as I'd not heard of it before. What a challenge and concern it must be. I will most definitely pray for a successful surgery and much improved health. How old is your son? xoxo
  • BeautyWithin
    316
    Thank you so much! He is 14.
  • Moonlitnight
    1.7k
    He looks adorable and such a lovely smile. I get upset if my daughter has a sore throat so this must be a constant worry. xo
  • Katooshie
    788
    here is my prayer...let the surgery be successful snd his recovery speedy and FULL!!
  • Katooshie
    788
    he looks so joyful and handsome!
  • Katooshie
    788
    Please keep us posted! We are all WITH YOU!!!
  • HeatherE
    110
    Thanks for sharing your story- you and your son will be in my thoughts! Nothing is harder than watching our kids struggle. :heart:
  • Lynn
    492
    Yes thank you for posting and sharing with us. You can count on my thoughts and prayers :pray: :hearts:
  • Misty
    400
    I too had to look up this medical condition, as I had not heard of before. Try and keep positive in these difficult days. It is always so hard when something happens to your child.

    Sending all my thoughts and prayers to you and your family for a good outcome.
  • Deleted User
    0
    This user has been deleted and all their posts removed.
  • buckeyegal1963
    623
    You and your family are in my thoughts and prayers. As a parent, I can only imagine how difficult this is. Your son has a million dollar smile, he radiates strength and determination, he's got this! Stay strong, stay positive!
  • BeautyWithin
    316
    Thank you all for your kind words. So appreciated.
  • Katooshie
    788
    How is our boy today?
  • BeautyWithin
    316
    You are so kind to ask. He's having a hard day today. PT was minimal but he tried. And I'm grateful for that. Hooked up for a feed now. Was able to get half piece of toast in. Waiting for Dr's office to call back to coordinate surgery. Hoping Monday. Gives us time to organize and for him to process. So grateful for you all and your kind words.
  • Katooshie
    788
    Can you tell me his first name so I can pray for him?
  • Moonlitnight
    1.7k
    Good idea Kat. There are actual studies confirming that if EIGHT people pray about something, at the same time, healing occurs. I believe the great Dr. Lynn McTaggart has written a book about that. It would be wonderful if others would "sign up" and we all establish a time and do this. I am certainly game.
  • Katooshie
    788
    Totally believe in the power of prayer, especially GROUP prayer! I am completely on board for a group prayer for this little guy. He deserves to be healthy and so does his mom deserve that for him! Let's DO this!
  • Moonlitnight
    1.7k
    Yes lets! Anyone else? Once we have eight or more people, we can figure out a time.
  • Katooshie
    788
    I will also take his need before my church for group prayer on Sunday if mom wants it. We have hundreds in that group and we all pray corporately for these needs! :) Let's lift this up to Universal LOVE and get this job done!
  • BeautyWithin
    316
    Finally had a minute to check back in and do something normal for 5 minutes. Matt will be going inpatient Monday, we are staying at least through Friday. Pending results of the multiple tests that are scheduled through the week, he might have surgery Friday afternoon. You are all incredibly kind. We are so grateful for your kind words and prayers.

    To tie this into hair stuff...each time we went inpatient the nurses and techs were all like "Your hair is so great. How in this place do you get it to look so good?" Lol. I told them all my secret and they were like, "Nah, girl. Seriously? Get out!" Haha. Plus I was able to direct 1 who might've benefitted from some wearable hair to some helpful websites. Hair ministry at the hospital!
  • Lynn
    492
    As your son is lying in a hospital bed and you still take the time to reach out to help recruit another women into our ranks....you truly are my superhero!! God bless and thank you dear for the update xoxo
  • Moonlitnight
    1.7k
    That is great! "Hair ministry at the hospital" :rofl: Looking forward to an update on your big little boy.
  • Katooshie
    788
    You are our minister of hair! Good for you! Looking good even in a health crisis is a grand thing. My wig is off to you! Literally! :)
  • Katooshie
    788
    Here is a prayer for Matt today: Lord, let Matt's surgery be a great success! Guide the hands of all those who work on him. Let Matt recover quickly and FULLY. Be with his family through this challenge and give them peace. AMEN (and so it is!) Keep us updated, honey! We are there with you in spirit!
  • Moonlitnight
    1.7k
    AND SO IT IS.
  • Lynn
    492
    Bless this day, your son, your family, the hospital staff and you. Be strong and know all your sisters are praying along with you.
  • BeautyWithin
    316
    Thank you all so much!!! We have seen a big change in Matt's outlook this weekend. It takes a while to wrap our brains around what is coming up this week. We are very grateful for all of your prayers and believe it has made a difference. We have peace in the midst of the journey. So thankful for all the new friends I have made here.:smile:
  • Moonlitnight
    1.7k
    How wonderful. The prayers will continue until Matt is fully well again. xo
  • Katooshie
    788
    my son had brain surgery when he was 12 to remove a benign tumour. It was a challenging time but 12 years later he is married with a baby son and working his dream job...enjoying a home that we bought with money we prayed in! Matt will fully recover and live a very happy life!! Amen!
  • BeautyWithin
    316
    Brain surgery. Oh my. I can't imagine what it was like to go through that. So glad he is well. Wonderful to hear he is happy and healthy now. We are looking forward to having normal at some point. Thanks for sharing your story with me.
  • Katooshie
    788
    you're welcome. Looking forward to normal for you and your family too!
  • Misty
    400
    Blessings to you and your families. Sending our love and prayers.
  • Bethcole
    9
    I had no idea there was a feeding tube awareness month. My son had a feeding tube and also a trach. We spent many days and months in the hospital. I will be praying for you and your son.
    Our son went to heaven 6 years ago, he was 20. Today we have a 19 month old foster daughter that has a feeding tube.
  • BeautyWithin
    316
    no2fhaablnewgswn.jpeg
    Hi everyone. Just wanted to do a quick check in and update. Switched off with hubby yesterday and brought sibs to visit. Made Matt laugh. Pic is from last night, he was people watching. Little sis left stuffed animals so he "wouldnt get lonely." Multiple tests each day. Had a PPN line put in to supplement nutrition. Endoscopy later today. Surgery tomorrow at 8. Thanks to all for prayers and encouragement.
    Ps. Doc walked in Monday and says, "Ooh, I love your hair." Lol. Later chatted with our night nurse and mentioned i wear my hair so she wouldnt be surprised when she came in for night checks. She says, "No worries, hospitals are a judgement free zone." I started pondering.... everywhere should be a judgement free zone.
  • Lynn
    492
    totally agree! Thanks for the update sweetie will be praying tomorrow at 8:00
  • Moonlitnight
    1.7k
    That is such a poignant photo. I will be saying prayers for Matt today and tomorrow and visualizing him smiling and everyone happy, even the stuffed animals (that was so cute of your little girl). Sending Mom and Dad my very best as well. Lots of hugs, Antonia xoxo
  • Katooshie
    788
    Prayers for our boy Matt for a FULL speedy recovery! And may you and your whole family experience peace and joy and grow closer as a family through this! Such a beautiful touching photo!! Sending love support and strength to you all! Thanks for the update!
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