Annabelle is getting weak.

She is tiring so quickly and having a harder time hiding her pain from us. She squints and gasps while holding her belly and then lies if you ask what is wrong. Her appetite is slowing and her spirits are dropping. Ive watched this evolution happen before, we haven't been here for almost a year but it's happening again. I have no idea what has initiated this decline but I pray we find help soon.

Last week I contacted our GI. We need help with her bowels asap. She prescribed a new cocktail for us to attempt to help Annabelle.

• 2 x 4oz cup of Miralax mixed with warmed apple juice (1 dose in the morning and 1 after she's asleep)
• 2 tablespoon mineral oil thru g-tube (1 dose in the morning and 1 after she's asleep)
• 10mg Douculax 
• Prunes
• Lots of fluids
• 1/2 sized Fleet enema 1x day until fully cleaned out
• A&D ointment on her bottom to protect the tears and bleeding 

This cocktail does NOT include any of her daily medications or treatments. This is only to help her lower GI move stool.

Her tummy is miserable, and reasonably so. She's always crampy and terrified to have a BM which only makes matters worse.

Her energy is depleting. I took her to the store and she couldn't walk more than a few aisles without being carried. She cannot ride her bike one street away to the park and make it back home, which means she can no longer ride her bike during walks that are further than 3-4 houses..

Saturday night, while Annabelle was asleep, she rolled out the bed and fell on the floor. A usual occurrence for a toddler in anyone else's home. A terrifying moment for our house at midnight. I ran to her bedroom as she cried in disoriented pain.. When Annabelle rolled out of the bed, she was hooked to her feeding pump and tubing. She had rolled herself around the tubing and when she fell, the connection ripped from her stomach before the safety disconnected before fully ripping the tubing out. When I found Annabelle in the floor, I noticed the tubing was unhooked (which is something she typically does on her own when she isn't feeling ok) and I simply cut the pump off to give her a break for a while. I tucked her back into bed and we all went back to sleep. The next morning she laid in bed moaning in pain. I asked her repeatedly what was wrong and she wouldn't tell me. Finally she began to cry and asked me, "Mommy, will you look at my tubey? Something wrong." It was bleeding. The bleeding had slowed down from the 9hrs prior that the injury happened, but her poor tummy was a mess. Her nightgown was covered in blood and her stoma (hole) was torn. Mommy guilt flood my entire body. How did I not know last night that this happened? Annabelle BARELY cried, I thought she just scared herself and fell out of the bed. Oh my poor baby :(
Her tummy is much better but very sore. A sore gtube is not very helpful when dealing with a poor lower GI system.

We need help and guidance from skilled doctors that understand this disease. We are at the mercy of their expertise on what our next steps should be for Annabelle and the treatment of this disease and how its destroying her GI system. Our prayers are never-ending to get Annabelle to the hospital she needs to be. Right now shes tired, she's sore, she disheartened but she still smiles thru the pain. She is so strong.