A Happy Post!

I really hate to eat my words later – but I am too excited to not share. 

Annabelle is doing so wonderful right now! ….i just don’t know why.

Granted, she is sick with her sissy’s shared cold so she doesn’t look so fantastic, she has a snotty nose, her coughing is just terrible and her temperature fluctuations are making our hearts skip a beat in nervous anticipation over what it may do (remember before, anytime she would run a temperature, it would take days to balance itself from unconscious 93 degrees – 104+ and unresponsive) Right now her temperature gradually rises and will balance itself with a luke warm bath. We aren’t giving her any meds – just watching to see how her little body fights this. This is the first time Annabelle has been sick since last year, when she went into auto-immune and landed herself in the hospital. After 3 months of no relief from the illness, her first endoscopy was performed and led to our first diagnosis of her Auto-Immune Disease, Eosinophilic Esophaghitis. I’ve been scared to death to see what her body will do to fight an illness and the time is here, I am so very proud of her and relived!! Im also so grateful this is simply a cold and not the flu – that could easily be a different story all together. Fingers crossed she fights this like a normal little kiddo and we move forward. This is a huge test for Annabelle!!

I am also VERYYYYY happy to brag loudly for a moment over my latest accomplishment!!! Annabelle’s granulation tissue ended up producing a total of three trouble areas on her tummy around her g-tube. I hate, with a royal passion, silver nitrate treatment of burning the tissue off her stomach. I am scared to death FOR her and absolutely hate to subject her to that pain again. I want more than anything to avoid any of those treatments for Annabelle, so much that I cancelled our appointment last week at the last minute bc I was scared :( Last week during my time off work, I decided I would get very aggressive over fixing this granulation tissue at home, myself, and I did. 

It involved a lot of baths and a TON of sterile gauze to keep exposure to any dirt/germs away.  

I repeated a process of:

• soaking split gauze in witch hazel
• applying it around the stoma
• securing the bandaging with tape and covering with another dry bandage, more tape, to keep it from getting hit.
• cleaning it all off
• letting it dry out
• applying a concoction of house remedies + steroid creams to the granulation tissue
• taping it secure for 1 hour
• removing bandaging, I list this as a step in the process bc it's involving ripping tape off her tummy that is holding the gauze in place instead of allowing it to move around. So imagine having a band-aid/tape applied and ripped off her skin 5-6 times a day. While this is a miniscuel task, it's one of our dreaded :(
• cleaning site, another painful process... I am literally holding her down and scrubbing an open sore and bright red sensitive flesh with a qtip more than 10x a day.
• changing drainage from split gauze every hour
• repeating a bath etc etc etc. 
• around the clock.

It was a non-stop, exhausting process of messing with her poor inflamed tummy BUT(!) it worked!!! I AM SOOO HAPPY!! Beyond that, I am so darn proud of myself and Annabelle for letting me work with her so much the last several days to correct it all. I’ve now set my mind that well never go to the hospital for treatment again, lol. Dream High, huh?

I spoke with the wonderful nurse from the Surgeon’s Office a few times yesterday, and also the Metabolic Dietician and GI. We all share similar concerns about the residue in the feeding bags and treatment moving forward with Annabelle’s diet, safely. I have already begun making changes but I can’t move forward without some type of medically directed assistance to what we can do for Annabelle. We made an appointment for tomorrow afternoon and will flesh a lot of plans out then. I can’t wait to share them with you :)

Overall, I am very proud of Annabelle right now. We are approaching the year milestone from when this all began and my anxiety is building. However, I am so happy to be in this place with her, watching her smile and enjoy days without constantly being plagued with pain. I hope this lasts, I hope this isn’t only a phase or calm before the storm. I hope this is a change and I pray we determine a plan tomorrow to give Annabelle a little more quality of life in the form of more foods and ways to continue caring for and raising her safely.

I wish I could say this is all a fluke of good days, or that they would come in due time. But I am giving ALL this credit to you for the never-ending prayers and support for Annabelle. I truly believe, without a doubt in my heart, these are prayers being answered and we're watching a miracle unfold before us thru Annabelle’s living, breathing, laughing, smile. I do not know what the last year’s intention was to put our family and life in the perspective it’s transitioned us, but I do know that we’ve found the best loving support system along the way. I do know I have seen miracles unfold before me and I believe we are watching another right now. 

At least that is my biggest prayer, 

Let this be a miracle, let this be the time in which Annabelle is relieved from all her pain and suffering from the last year. Let this be the change and hope we have all been pleading for. Let this be the moment of ending tears and worry. Let this become the flood of resources, help & direction we have been searching to provide Annabelle with the best quality of life she deserves. Please God, let me be correct in this prayer and wish.