All in all, from a health standpoint, Annabelle did well. She had quite a few spells Saturday that came out of nowhere. She played well and steady - spent most of her time in the sandbox by herself, but she was happy. She was happy to be outside and FREE. We watched her little cues and stepped in when we needed to. She didn't play hard this weekend, but she did wear out quickly a lot on Saturday. I watched from a distance and when I noticed her little body was depleted of any energy we would step in.. she will play and laugh and run.. and then within 30second, she would have zero color to her face and scan the yard looking for help from mommy and daddy. She did awesome during the easter party saturday though, she played, she ate pretty well and she didn't over exhaust herself. She isn't the best easter egg collector - she's too focused on picking up one egg and praying it has a non-permitted candy inside and she can eat it before an adult realizes. lol.
Sunday was a hard day. I knew it was going to be hard, I anticipated it would be difficult and we weren't wrong.
The girls woke late Sunday morning, which was very nice. They came downstairs and thoroughly enjoyed their baskets, Annabelle's of which contained a few fun spring toys, outfit, bike helmet and safe candies. Soon after the baskets were destroyed all over the living room, we quickly pulled our family into Easter Sunday attire and headed to church. The Pastor says a prayer, we all respond in unison 'amen'... pause .. a moment later, Annabelle belts to the top of her toddler lungs "AAAAAAAAA-MENNNNNNNN!!!!". My purple face scans the church pews as everyone giggles and I begin my own prayer "Dear Paster, please dismiss for children's church soon!". Not soon enough though because soon following we had a wonderful singer share a song in solo with the piano. Not 30 seconds into the song I found myself in awe of her talent and watching her intensely at the stage. I then hear this horrid noise of sounds moving up and down but without a break... to my left, sitting with her feet directly in front of her and hands in her lap, Annabelle is rocking her head and shoulders back and forth, eyes tightly closed and signing as beautifully as she could with our soloist. Oh child of mine, Be grateful we're in God's house, it's Easter Sunday and all the grandmothers surrounding you are 'tickled to death' at your outward personality. Finally, it was time for Children's Church and Mady and Belle scurried off. I spent the next hour and half listening to the preacher explain to us what Jesus has done for each and every one of us, what God sacrificed and how there is such a bigger picture in this world that we can't understand, but must trust. I spent an hour and a half with tears absolutely pouring off my face. I left with the worst headache, zero makeup and a very confused but refined spirit.
Easter Sunday was hard.
We had two dinners to attend after church. The first was with my family and second was with AKs. We enjoyed more Easter Egg Hunts and Annabelle did much better at finding eggs to fill her basket. Anytime someone wasn't watching however, she would disappear with an egg and hide, crouch down behind something where no one could see her and work as fast and hard as she possibly could to unwrap a piece of chocolate that she knew she couldn't have. Every time, she would get caught, the candy would be taken away and Annabelle was again left with sobbing tears. Over and over and over and over Sunday this process repeated itself "Please mommy - please please Annabelle have some. Candy please? Sissy candy? Annabelle candy? Mommy candy? please, pleasee!!!" My heart broke over and over. There is no amount of pretzel, smarties, or jello that can distract the toddler from having what everyone else around her is enjoying.
Easter Sunday was hard.
We got home with just enough energy to exhale and collapse. I snuggled Annabelle far longer than I usually do, but not longer than she wanted.. She didn't say much or even wiggle away.. she genuinely laid in my arms and watched me as I whispered to her how proud I was, how happy for her I was, how grateful we are to have her with us, how strong she is, how much Jesus loves her and how much God will protect her. There are times, even with a toddler that they just know.. they know to be silent, to be still and to absorb the life around them.
Annabelle had a really tough day on Sunday, she had a good Easter weekend but it was still difficult - days are not as easy for our family as we all wish they could be. The more time moves forward, the more we desire to gain more out of this life's path we are on. In many ways, we are now able to do so much more than we were last year - while that blessing is never overlooked.. it's sometimes painful because we're tasting a piece of life we still pray to live and we aren't quite there yet. We may never be there, or we may be there in a few months. But for right now, our family is between a rock and hard place.. living within Annabelle's physical constraints and wanting to enjoy so much more out of life. We are wonderful at enjoying what we can, now, and will continue to do so. We know full well that life is about stopping and smelling the flowers - right now, that's still the pace we are on and without a doubt, we're smelling the flowers.
Feedings are going very well. We have a new medical supplier (thank goodness! finally!) so we are trying to figure out just how to use the new equipment and supplies. She is still taking continuous feeds all night and bolus feeds every 3 hours during the day. She gets a little over an hour off the pump, 4 times x day and within that hour we play play play and enjoy being free :)
She is eating wonderfully. Better than she ever has. But that blessing comes with an ugly, heavy curse.. one of which we are begging each and every one of you to help us pray for good news next week. Food can be a poison to her little body - food can also be the comfort and desire Annabelle enjoys to make her feel a bit more normal and like the rest of us. We are praying so very hard that we have a perfect set of biopsy's next week and we do not loose any foods.
All that being said, we still have concerns over several things that are not very clear to any of us. Annabelle is receiving a flood of calorie packed medical food via tube feedings, almost around the clock all day. She is getting enough tube feedings that she doesn't rely on any table foods for her nutrients. She is eating us out of house and home of table foods though that are safe. But she still isn't gaining much (if any) weight! She is also not able to play hard or long without depleting from energy so rapidly it could make your head spin. Her pains that used to flood her body all the time seem to be going away, which is such a blessing. Only on occassion does she have pains that we can't explain or resolve - she just says "Annabelle no feel good" or "My tummy hurts" ... "Snuggle you mommy, don't feel good.. don't play" But these occassions aren't frequent, we have more days of her little body being worn out and exhausted than days of pain and for those we are so very grateful. Maybe next week's procedure can help answer some of our questions ...
Please keep our little family in your prayers as your days move ahead. Say a good word for a safe procedure Tuesday morning. Pray for the safety, skill and knowledge of the team of doctors, anesthesiologists and nurses in that operating room with my little baby. Pray for only good views from the endoscopy, beautiful clean pictures that Annabelle's GI system is not under attack and perfect Biopsy's to say that all the foods in our diet are safe. Please pray for the sanity of mommy and daddy as we move forward with a stomach full of nervous, heart flooded with fear and love out of our control for our little girl as we take her yet again to a hospital OR. Thank you for your endless love as always.. and I promise to keep you all updated as we move thru the weekend and to the hospital Tuesday.
Happy (belated) Easter!
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