Frustrating Sunday Plea for Help

How many drugs can a toddler be on and continue to decline? She isn't moving rapidly downhill, and for every smile and giggle we are blessed.. But Annabelle is certainly not making progress in the last several weeks. She's on heavy prednisone and antibiotics and only coughing and hacking worse. Her nose constantly runs, she's wheezy and congested. None of these are as uncomfortable for her though as the chronic constipation. I'm giving her Miralax twice a day with the max dose ordered by our doctor.. And every day , I have to rush to my trembling child yelling holding her little hiney. Her poor butt bleeds.. Enemas and more of an enemy to Annabelle than helpful. I wish they weren't but she just fights so terribly and spends hours SCREAMING(!!!) afterwards. It's traumatic enough that I'm beginning to loose focus on which is worse. We need help for our doctor, as usual.. But we just don't have quite the right doctors.. As usual :(

Her birthday is right around the corner! September 20th. Planning her party is beginning to tug on my heart strings so heavy, I am having a hard time finding the motivation to even plan the party. How do i make my child a birthday cake when she can't have a cake? Can I serve food or will she had just lost all her foods from the scope a week before? Planning is hard. Being a mommy and wanting only the biggest and best for your strong little girl, it's enough to drive you into a hole during times like these! I've said it before and again , holidays suck!

We're still on schedule for the OR, September 16th - the closer we get to the date, the more I don't want it. I just don't see the purpose any longer. News for Annabelle is always discouraging and if we find she's in bad shape still and we still having gained control of our last relapse , than we will begin to face ever harder decisions that still aren't helpful! We need help. Annabelle NEEDS a doctor and a miracle. She needs her true diagnosis and a hospital to take us and fight until we get everything we need. All were asking for is a diagnosis and treatment plan, that's all our family wants and could ever wish for. Please, this year we need that miracle and prayer answered. How about this month? Is that too much to ask for? Help for your baby that's suffering? That's all we ask... Answers and help for this strong little girl. Someone hear our prayers, please!!