Anticipating The Storm

Yesterday was another day of long appointments for Annabelle and I. Her appointment was scheduled for only a 30min window that I was willing, yet nervous, to attempt during my lunch break - it ended up involving multiple doctors and quite the conversations about sweet Annabelle. I walked into the appointment with confidence and a nervous stomach - I left yesterday with an even more nervous stomach and much less confidence, more understanding of whats going on but a boat load of more fear... about whats going on.

Annabelle has begun to loose weight again, despite the increase in feeds. Her appetite is nearly gone - she may, *may* eat an ounce or two of foods/fruits/veggies/smoothies/snacks all day total. I just cannot make her eat. I don't know if she's in too much pain to eat, I don't know if the acid is making her tummy hurt, I don't know if the EoE is still so very much out of control that the process of food working down her esophagus is more work than it's worth. Or, maybe she just does not have an appetite at all and therefore she doesn't have a desire to eat. The feeds she is getting do not 100% make up her nutrition needs, she is still responsible for consuming a bit of the calories on her own but she isn't.

This weekend, I decided we would go to the store and local produce stand and I would purchase every single safe food in her diet. We did. I made a buffet for her from one end of the kitchen to the other. Snack plates, bowls, cups to carry, drinks and foods accessible everywhere to pickup and eat as she plays. She wasn't interested a bit. I gave her favorite snacks in a plastic cup to carry with her (gasp, I even permitted her to carry it around the house / yard / living room etc) but it didn't matter, she barely took 5 bites and I ended up picking more crumbs off the floors than what landed in her belly.

Her weights dropping and there just isn't anything we can safely do about it. If we increase her Elecare feeds, we will begin to play with fire, as Annabelle's system crashes hard when she's solely being fed Elecare (we still have no idea what the ingredient in Elecare is that does this to her.. but we've found a sweet spot by offering many foods that seem to balance that level a little better).

One of the doctors largest concerns yesterday was the amount of prednisone she is on and without an end in sight. Annabelle is beginning to show many outward signs of steroid distress.

• She is undoubtedly presenting anger / frustrations from the long-term use of steroids. (I joke and call this baby-roid-rage, but in all seriousness, it's a scary thing watching your frustrated child so very angry and you know it's the heavy doses of drugs that alter her sweet disposition, and there's nothing we can do to change it). 
• There are reportable areas of swelling on all her limbs, hands / fingers, feet / ankles, cheeks and face. 
• There are skin changes, reddish/purple lines throughout her skin from steroid use.
• Not to mention the amount of restlessness, long nights of non-continuous sleep, and her incredible increase in thirst. Annabelle drinks nearly 3-4 cups of water JUST during the hours of 8p - 5a WHILE being hooked to her feeding pump and being fed. She is constantly thirsty. (But somehow, knock on wood, she's determined to potty train herself, and she's doing pretty good at it!) 
• Hair growth is a notable change that I just recently recognized. I remember this past fall, as Annabelle was coming out of her very worst months, we switched her formula to BCAD/Anamix, and suddenly her hair began growing! Her nails started growing and she began to wake up!! I hadn't paid much attention to these things for quite some time, until this weekend when both girls asked me to make their hair fancy. I put curls in Mady's hair and began to play with Annabelle's.... only to find that the hair still on her head, not on her pillow as usual, is so brittle, uneven, the top of her head has hair approx 2in give or take, the bottoms is a bit longer but not much. I kept playing with her hair and then it hit me 'her hair likely hasn't grown at all since the winter when we stopped feeding her BCAD/Anamix. The doctors yesterday checked over her body and also asked about her terribly brittle, breaking/split/paper thin fingernails. I rarely ever clip her nails any more. Like most her life, her nails just don't grow. 

If we remove the prednisone from Annabelle's medication cocktail, she will immediately loose her appetite even more so than she already has. Her weight will spiral down. And it's very very likely that her immune system will once again set into an out of control spiral. The plus side is, the testing / lab work we are constantly performing will no longer be blurred by such a heavy drug suppressing her systems. There are too many dangers to keeping a young child on heavy steroids for an extended period of time, don't look them up, it's terrifying. We know we can't keep her on this regime, but we also have no other choice when we don't have a clue what is setting her immune system into a relapse. We cannot afford for the EoE to do anymore damage than it already has, but we can't afford to keeping her on this cycle either bc it's clearly not working any longer. We are quickly loosing our #1 focus and goal with Annabelle: Quality of Life. Right now, we aren't there and she deserves much better than what we're doing.

I am desperately trying to secure an appointment with the EoE Clinic for their specialists to take a look at our latest biopsy's / re-scope and hopefully help us determine a new treatment method that doesn't involve drugs. From there, we can continue to test and draw the labs we need from Annabelle.

Our team of doctors are working diligently right now to move us to a facility, not within the state, but fingers crossed on the east coast of the US - for a peds neurologist that can address their concerns with all Belle's Neurological signs of damage/distress and also components that associate with Immunology that trigger Eosinophilic Disorders.

Her walk / run is not normal. If you watch her run, your eyes will cross at how funny it looks. She's becoming more and more unstable and clumsy when while walking. She's fallen down the stairs more times than I can count in the last month. She trips constantly over nothing on the floor, she has a hard time standing back up and she is tiring more and more frequently. Her disposition is so amazing however, that if you weren't looking for these things, you wouldn't recognize them. Her attitude and confidence is thru the roof - when she falls, she jumps right back up, when she slips down a flight of steps, she shakes it off and says "Silly Annabelle, I falled". But it's not ok. It's getting worse and more pronounced, and unfortunately, she's really starting to get hurt from all these falls. She has bumps and bruises all over her body, busted little lips and goose-eggs on her noggin all the time. CPS would love to visit our house, I just know it! (freaking terrifying).

The only highlight right now, is that her energy levels are beginning to deplete again. This isn't a great thing by any means, but I do like seeing her rest more frequently instead of pushing thru to a point when she can hardly stand because she is so tired. She asks to take a nap in my bed all the time, she pleads that we sit down and cuddle her more often than she asks we play games on the floor. She doesn't like walking from the car to the house/store, she cries to be carried and wants to be held the entire time. (Mind you - this child is the queen of independence and doesn't want an adult to get in her way for anything.. her asking to be held is anything but laziness / milking attention, this is Annabelle's way of truly expressing the fact that she's tired. And she must be! She didn't sleep during the night bc she was all jacked up with roid-rage!)

Yesterday when I picked her up from the nurse, Annabelle had just woken up for the day, it was 4:45p - she then slept all the way home, came home and played for about an hour and then was asleep at 7:45p. The days are beginning to shift. We're watching the calm before the storm begin to show it's ugly face and AK and I are worried to death. We know she will be ok, we've ridden these storms before, but it's the unexpected that we never know how to prepare for. It's the unexpected curve balls she throws, or the painful processes we endure that flood my heart and tummy with fear - starting now.

Hold on tight prayer warriors - we're about to take off once again. I will keep you updated and hopefully will have dates to share very soon for our next upcoming appointments!

xoxo