Overdue Update

First, I apologize for the delay in updates. We have taken some time to really enjoy family together, run and play, make memories and laugh entirely too much. AK and I enjoyed a much overdue adult weekend.. let’s be honest, it was 24hrs, but there were no children and excellent friends to sit by the beach with our toes in the sand and drinks in our hands. The last several days have been a breath of fresh air, long overdue for our family. We needed the break to rejuvenate and refocus to continue pushing forward. I began hitting a wall the last several weeks and I finally have the energy back to push forward even stronger.

While we have been snapping pictures and making memories, that doesn’t mean life has been the nicest to Annabelle.. in fact, it hasn’t gotten better much at all unfortunately.

We were so excited to begin foods again. I was over the moon to serve my little girl Sweet Potatoes! We gave it two weeks without any success in the process getting any easier. For example: Annabelle ate small, soft, diced little pieces of sweet potatoes on Friday – Monday and Tuesday she passed whole sweet potatoes in her stool… they were never broken down in the smallest bit. The sweet potatoes passed and then followed by very soft stools. The days it took for the foods to pass, she was beyond miserable.

I decided to take a step backwards.. I overlooked how difficult this must be to begin digesting food for the first time in almost 4 months. Physically, Annabelle can eat, she can pickup foods and put them in her mouth.. but GI wise, her tummy needs to learn what to do with solids again. I decided I would puree the most organic and softest sweet potatoes I could find and mix a tiny amount into the Neocate Nutra that she was being spoon fed and give that a shot. It resulted in the same issues = very uncomfortable, upset tummy and days and days of odd stools. By this time, her face began to break out. She was wearing hives around her neck, ears, cheeks and chest. The bumps were growing larger, multiplying and spreading down her body. This isn’t an Eosinophilic Esophagitis reaction, this appears to be an allergic reaction to me. I decided after two weeks, that just maybe Sweet Potatoes were not what we needed to be doing. I confirmed the rashes with the pediatrician and we removed food from her diet. She moved back to Elecare Jr and Neocate Nutra only again. It broke all our hearts, she loved eating so much and I had to take it back away from her :(

Meanwhile.

Last Friday Annabelle’s ear began pouring white, flaky, ashy residue from the insides of her ear. If you wiped it away, it would immediately reappear. It seemed quite odd to me and we kept an eye on it. AK and I went out of town and I made sure my mom (that was keeping the girls) kept a close eye on it. By Sunday it looked much worse, but she wasn’t in any pain. She never ran a fever (Which is CRAZY considering that is what this kid is notorious for!). I wanted to take her to KidMed Sunday evening because I was so worried it would turn into a painful ear infection overnight, and I am tired of seeing my baby girl in pain. I decided I would wait until Monday and call our pediatrician.

Monday we saw Dr. Young. We discussed a couple things while we were there.

1. Annabelle’s Ear. She has no clue what it is. She didn’t do any blood work. She didn't swab the oozing gross stuff pouring out of her ear. We decided this could have come from Great Wolf Lodge and she prescribed an antibiotic 
2. Delays that were not part of her medical records. I backtracked every blog entry that I had written about my girls over the last couple years, and wrote down any concern that I may have had while Annabelle was growing. At the time they were not concerns, but I noticed myself blogging “I felt myself become monotone as I watched Annabelle hardly crawling around when cousins her age are walking and running laps around her this weekend…. or, Annabelle is just as frustrated with me as I am with her these days.. If she would just try to tell me what she wanted, I would do whatever it is that she needs! If she wants a cup, just go to the fridge or bring me your cup kiddo! Im not a mind reader!” These were things that I found myself thinking and recognizing and I know I mentioned them subtly to her pediatrician during our routine visits but they are not in her medical files. Therefore I wrote all these things down and highlighted when Annabelle met her milestones.. all delayed. Sitting up: 9-10mon. Crawling: 10mon. Sleeping thru the night: 20mon. Even now, she just learned how to open a door at 22mon old – that should have been a skill she could grasp quite a while ago. Nothing is monumentally delayed by any means, which is why I never pressed these issues.. I just briefly mentioned them in conversation with the doctor that she wasn’t keeping up quite as I would expect her to. To be honest, I enjoyed her taking her sweet time, I know she is my last baby and I savored the sight of watching her speed crawl across the living room floor to attack her sister! Regardless, myself and the pediatricians concerns are that other doctors and specialists do not see any records of there ever being any delays, when in fact, even minor, there were delays. With all the notes that I provided, we attached an addendum to her medical records and resubmitted them to Dr. Teasley’s team in hopes she will recognize these are not new concerns, but are actually evolving issues.

Tuesday Morning

Annabelle woke around 6am, I changed her diaper. It was absolutely full. Shortly before 7a when I got in the shower I changed her again and remember saying “Did you jump in a swimming pool kid?!” because her diaper again was so very full. When the sitter got to our house at 7:45am she said, “Ashley, Have you changed this kid this morning?!” Annabelle’s diaper was so very full.. it was literally exploding. For all you parents out there, you know what I mean when I say the crystally, particles were covering her tummy as the diaper began falling apart from being so full. I asked the sitter to keep an eye on that ‘situation’ for the day and let me know how the morning progresses. Annabelle didn’t drink a ton the night before, and she only drank about 2-3oz when she woke up during the night. The sitter communicated to me during the day that each time Annabelle would have a cup, within 20-30min her diaper was slammed full of everything she drank. Between cups, she was dry. That evening I watched Annabelle and wanted to give it a try myself, darn if she wasn’t right. It was odd – I am still baffled but not overly concerned, just as long as she doesn’t begin to dehydrate. It's all being documented and I'll mention it to the pediatrician as soon as she calls.

Her face however is beginning to look worse. The sores that are pouring from her ear have now spread around her face. They are on her lips, chin, cheeks, neck, chest, tummy and legs. Annabelle’s immune system is practically shot and my concern now, is that if this isn’t just a random infection that will be covered by the antibiotic prescribed on Monday – her body is going to allow whatever this is to continue to spread. It’s gross, they are red open sores and she keeps rubbing at them. I have a call into the pediatrician today to discuss what we should do.

Last night was terribly rough. I am exhausted.. Soooo tired!! 

AK is out of town, again, and I was home alone with the girls. I got home from work late last night and felt defeated but somehow knew I needed to prepare for battle with the girls by myself. I gave Annabelle some baby food pureed Apples since it’s been a while since we cleared the Sweet Potatoes from her system. She was begging for dinner while Mady ate, so I gave in and mixed the baby food with some Nutra. Immediately once she was finished we moved upstairs to the bath. It hadn’t been 15min since Annabelle finished dinner and she pooped in the tub (yum, I know) and it was pure Neocate Nutra and Apples.. 100%. Her system truly isn't digesting food at all.. and it's been weeks - I want to believe that at this point her GI System would be working on some level again. And that isn't the case, whatever goes in her mouth, comes out in the exact same form right now. I don't like this combination :(

Girls were pulled out the tub and scrubbed downstairs in my bathroom instead. They got dressed and I put Belle to bed as Mady got to pick a TV show of her choice while I scrubbed the upstairs bathtub, viciously, for almost an hour. Then the bathtub turned into the toilet and sink.. which turned into organizing the linen closet.. reorganizing the kids closets and cleaning the playroom.. organizing the kids bookshelf.. move downstairs and scrubbed my bedroom.. decluttered and threw away any old things, scrubbed my own bathroom, under the sink, dismantled furniture to clean around, etc etc etc. It was one of those kind of nights where I got on a cleaning spree, much overdue, and decided I was finished living in filth. My house isn’t filthy by any means.. but lack of organization drives me absolutely batty. Mady helped out as I ran around scrubbing things. She is a stellar duster and I used her little fingers for baseboard cleaning purposes ;)

Madelynne asked if she could sleep in the bed with me and I agreed. I grabbed her pillow and blanket from her bed after I checked on Belle for the 69765415684 time of the night and tucked her in. By the time I got out the shower, Mady was asleep. I laid my head down around 1130pm.

1:00am

Annabelle wakes up screaming bloody murder. She didn’t want anything to eat. I couldn’t tell what was hurting. Her diaper again, was soaking wet. She was shaking with a temperature at 94.2 that took almost an hour to bring up. By 2:00am I started crying with her.. I didn’t know what to do or how to help my baby girl. She’s hurting and it’s breaking my heart. She looks into my eyes and expects mommy to be able to soothe her, to fix whatever is doing this, and I can’t. Mommy’s should be able to fix these things, or at least know what to do to help. Kid hits their knee, give them a wet paper towel and voila, All Better! They shut their finger in the door and there’s no blood.. put a bandaid on it and like magic, the pain is gone! Annabelle is begging for me to pull a mommy trick out of my bag and all I can do is sit there and cry with her. She finally gave up around 2:30 am and I went back to bed. My mind was racing. My heart was still in my stomach. My stomach was in my throat and my eyes were burning they were so tired and bloodshot from crying. I ran my fingers through Mady’s hair and cried myself back to sleep.

5:00am

She woke back up again, crying, but with significantly less energy. I pulled her out of bed after I brought her a cup and she laid her head on my shoulder. I sang and walked slow laps around her room as she whimpered. Some moments she cried hard and mad, some cries sounded so defeated and you could hear her just beginning for relief for it all to stop, and some whimpers were just that.. whimpers of exhaustion. I held her for about 30min until she fell back asleep and laid her into her bed, snuggled with her blanket and Lambie.

When I crawled back in bed, Mady had PEED in my bed! That turned into a sheet change at 5:30am in which I surrendered for the night and said, “Forget it, I'm up, I guess this begins the day.” I did laundry, cleaned a little more and took a shower. Both girls were back up together by 6am. Both were cranky which made a combination of three cranky girls this morning in Chester. I was so relieved when the sitter arrived at the house, I squeezed the girls tight, gave them both kisses and ran out the door. I called AK and said, “Get home! I surrender!”

This morning, I am drinking my weight in the strongest coffee that my office can brew. Im in a generally good mood, although I believe that’s just a reflection from my sleep deprivation. Let’s see just how nice this all looks at 4pm.

I’ve called the hospital and completed all the work for pre-admission before tomorrow’s big day. I am terrified beyond belief about tomorrow. I think the last EEG has scarred a bad memory and imagine in my mind. I have enjoyed Belle being home and not in the hospital last week, it was a wonderful break.. but now were back to the ugly reality. I feel so bad for her. After last night however, I am re-energized again for answers and praying hard that tomorrow will bring them for us. We are checking into the hospital at 11am. We'll be at MCV in the Epilepsy Monitoring Unit until Friday afternoon. I have no clue what to expect, I promise to keep updates coming. Forgive me in the delay the last couple days.

Finally – WHO SENT MISS ANNABELLE A GIFT FROM AMAZON WITHOUT MENTIONING WHO IT CAME FROM?! I cannot thank you enough for your generosity, honest, from the bottom of my heart I thank you. The smile it has put on my girls faces are priceless. FESS UP! Who are you? 

Please keep us in your prayers tonight for an easy day tomorrow. Say a good word for answers and strength, no stress or anxiety for Sweet Baby Belle and patience for mommy to get thru those days in the hospital while wearing a strong face. Thank you all, as always.