My blood is boiling.

Here’s an extremely high level of what has transpired over the last two days.

Dr. Teasley and her team are making our next steps forward, very difficult. She is not willing to see Annabelle before the August 22^nd appointment, despite her calendar presenting several available openings between now and then. Annabelle has the most incredible, beyond belief Prayer Warriors out there, cheering her on and doing anything and everything we can to find answers and help for this sweet little girl. It appears Dr. Teasley is not a fan of these efforts and has contacted my pediatrician personally to discuss how unwilling she is to accept Annabelle’s case. She pulled Annabelle’s records from the very beginning when we left the NICU and is now taking a step backwards and finding explanations as to why suddenly Annabelle is ‘so sick’ and all this has just begun. My pediatrician called me and is also frustrated because there is nowhere in Annabelle’s previous records that show concern regarding her growth and hitting milestones. My blood began to boil and my eyes flooded with tears, “Im sorry – I’m not following you right now. What exactly are you trying to tell me? What is your point and what are you trying to say?” Basically, all these issues are not noted in Annabelle’s records at the pediatricians office!

My jaw dropped. I tried hard to collect my thoughts and tap into a memory of almost two years ago.

I began to run off SO many scenarios that I have consistently brought up to our pediatrician. This is not my fault or responsibility to ensure they are all noted in her records, but I am confident they were all discussed.

• Countless upon countless trips to the pediatrician regarding Annabelle’s feeding issues, beginning as soon as she came home. I cannot begin to tell you how many days, almost every other day for weeks that I would sit in the pediatricians office and let Annabelle scream her head off until they helped me. They switched her formula so many times and pressed back on me trying to breastfeed, finally I demanded to see a specialist and that is when we found blood in her stool testing positive for both a milk protein and soy allergy – Annabelle was immediately moved to an Elecare based diet only and starting that day she stopped screaming and finally rested.
• At her 9mo checkup, I mentioned Annabelle wasn’t sitting up or crawling yet. It seemed all the other babies her age were doing so and she hasn’t shown any interest at all. She’s moving behind everyone else, is everything ok? 
• At her 1yr checkup, Annabelle wasn’t showing any signs of standing or being ready to walk. I was trying so hard to give her credit for being two months early, and also trying not to compare Annabelle to Madelynne’s milestones. The pediatrician and I discussed my concerns and he reassured me everything was fine. Annabelle was growing well, she was progressing and very alert and he had no concerns. Him and I discussed Annabelle’s progress a lot and I left the office feeling rejuvenated as Annabelle would just move at her own normal pace. And to be honest, I didn’t want to rush it. She will be my last baby and I want to enjoy every minute of seeing her crawl around. I didn’t think much else about it. After all, it wasn’t pressing or serious that she was behind, it was just odd to me.
• Every single week, many times multiple trips a week I brought Annabelle to the pediatrician from Christmas Eve thru mid-March. She was sick, so sick and nothing was making her better. We tried multiple rounds of prednisone, antibiotics and different regimens to help her. Finally I was profiled as one of those parents who habitually brings their child in for the same complaint when I really just need to stay home and allow it to run it’s course. After the comment was made, I scheduled an appointment with our GI Specialist – he performed an Endoscopy a week later and delivered our explanation for the last several months illnesses and diagnosed Annabelle with Eosinophilic Esophagitis. 

From that time in March, we have rarely been back to the pediatrician at all. On many, many occasions I have considered moving PCP to another office but I just hadn't made the effort to do so. I really liked Dr. Young when I got to see her, and the next time we actually needed to see a doctor, I requested to see her vs. who we were previously seeing. That is the moment all this began. She immediately took the bull by the horns and listened genuinely to my concerns. She raised her own concerns with Annabelle and her growth charts, she ordered labs and held my hand that "You're right mom. Something is going on.. we need to figure this out."  At that point I knew I wasn't crazy, I was so relieved that someone could validate what I was feeling and what "Just isn't right.. something is wrong with my baby". We have been working together this entire time, but until Dr. Teasley pushed back, Dr. Young finally put her own set of eyes on Annabelle's previous records and we started to find missing blanks. I am furious, but also so very confused. "Do you really mean to tell me that just because it isn't specifically noted the conversations that I had a year ago about whether or not Annabelle was hitting milestones, that those things really have an impact on whether or not she is sick right now? What different does it make?" To be honest, I didn't think twice about those concerns that I had a year ago.. they were not raising red flags for me then - perhaps they help pull pieces of this puzzle now, but just because they are not on record, doesn't mean Annabelle isn't in danger right now. 

Most our care was handled not in a pediatricians office, but in our specialists offices over the last couple years. When I felt the resistance from our pediatrician, I took the approach to only use them if I suspected an ear infection / strep throat or something similar. If I had growth, weight, GI concerns, I booked an appointment with our specialist. I learned very quickly with Annabelle to go directly to the source to get the help that I need vs wasting time with others that will not be concerned. Apparently this is biting me in the butt right now, because my GI is not driving this journey - my new pediatrician is. Im so upset. I feel like no matter how hard I've tried to help Annabelle, somehow I keep falling short and hurting her. This is the last thing I needed.

Since Dr. Teasley is putting Belle under a microscope with the mindset 'she isn't my patient, I don't have to see her', she is still looking for every plausible excuse as to what could be happening vs. helping us find answers. Dr. Teasley has pushed back once again and we have been handed over to Dr. Seinfeld. 

Dr. Seinfeld is the Neurologist that we saw a couple weeks ago that was less than a help at all. I wasn't happy when I left her office - she spoke to me about everything Annabelle doesn't have, and then asked me not to even book a follow-up appointment. I can see this going over well already. 

I spent my afternoon yesterday, absolutely torn to pieces over what is happening. I do not understand to save the life of me, how everyone wants to look the other way and not help Annabelle. This little girl doesn't deserve this.

I let every tear fall to the ground yesterday when I was on the phone with Dr. Young, she kept telling me "Ashley, I've got this. I am doing everything I can. I am finding you doctors.. we just have to sit back and be patient, we have to relax and just wait for them to see Annabelle." 

While I know she means well, and I trust she really truly does, this isn't at all what I wanted to hear. "You are a mom, you wouldn't stand for this! My little girl is SO sick and she doesn't deserve to be pushed to August 22nd before she gets attention! YOU WERE NOT UP WITH HER ALL NIGHT LAST NIGHT LISTENING TO HER SCREAM!! YOU don't have to see the face she wears when she is scared out of her mind before a seizure takes over her body! YOU don't have to fear every single night what the next symptom will be! Annabelle and our family needs answers. I promise you this, she has the most incredible, fierce team of people standing behind this little girl and we ARE trying to follow your lead. The army of Prayer Warriors and cheerleaders Annabelle has is so intense you wouldn't believe it. Listen to them roar and let them help us! We have to do something, and we will do anything to help Annabelle. Please let me trust you.."

Dr. Young listened and talked with me for quite a while. She agreed to call and personally speak with Dr. Teasley and the team again. She said she would do whatever possible to gain another step forward.. and she did.


Pediatric Neurology at the Children's Hospital called a few hours later and has agreed to admit Annabelle. 

They are admitting her into the Epilepsy Observation Unit at MCV on August 1 - August 2. They will be repeating another EEG with video surveillance to  monitor her seizures for 23 hours. This is Dr. Seinfeld's next plan. Depending on the results of this next test, Annabelle will be picked up by Dr. Seinfeld, or seen by Dr. Teasley. 

There are three other things (diseases/disorders, etc) that have been brought to light during discussions between physicians. I cannot remember what those are, but I believe I have them written down somewhere. There are a couple other tests involved to see if they are explanations for what is happening as well.

My prayers today are praying for full relief from whatever is consuming my little girl. I feel like she is being wrapped so tightly in this illness and is beginning to become robbed of the life she deserves. With each day I see her drown a little deeper into the darkness of what is happening and I am praying with everything I have for total relief from this. I guess I am praying for a miracle for my baby girl. I don't want understanding, help, guidance.. I want a darn miracle for my baby!

A step back - I do need some things... I do need patience and strength to not lose my mind over doctors and the healthcare system that is failing my child. We have big, big big problems with our healthcare system. I wouldn't see them from the surface if I were just an everyday patient with an ear infection - but when you get dealt with a crisis such as this, I cannot begin to tell you how greatly devastating the insurance companies and doctors can tear apart your life. When all this is said and done, I will have a lot of work cut out for me to clean up the messes I am making on this rough road for answers. I have uncovered so many ugly patches in the healthcare and hospital system that I never knew existed. That is for an entirely new post.



Today I packing the car once again. Making my usual round to the gas station before getting on the interstate and heading 64E back to the hospital. We will have Annabelle's patches taken off and read, I do not know if they will be reapplied afterwards or what the plan is. But she seems to be doing very well. They haven't seemed to bother her much at all and I am so grateful for that. Just looking at her poor back, I know it would drive me insane.. but Annabelle is a different story - that little girl is a rockstar, nothing can slow her down! I am praying for safe travels today along the roads, and hoping to spend some much overdue one-on-one time with my Madelynne this afternoon. Her and I both need it. AK should be slowing down at work tomorrow, fingers crossed, so he will be able to be home with the family more and try to plan for something fun for us to do. We have all been moving so quickly around one another and hardly speaking to touch base - I am hoping for some slow, relaxing time this weekend, all happy smiles and no pain. Fingers crossed!