Sunday, June 30, 2013

Weekend Update with Dr. Mom

All in all, Annabelle has had a pretty good weekend - nothing extremely eventful, just more of our usual curveballs to keep mommy and daddy on their toes. I kept the girls entertained mostly to keep my mind from wandering to sad places. Like I mentioned in a previous post, there is no reason for me to worry and be depressed before anyone even gives me a reason to do so. Im trying so hard to smile and enjoy everything going on around me - and please don't get me wrong, I AM enjoying my babies, it's just hard not to worry about the obvious.

Annabelle's temperature hasn't come much higher than 95 all weekend, this afternoon I keep taking it and it's staying in the High 94s / Low 95s. It hasn't moved much, so I am grateful. It's when it moves is when she has problems because it moves so suddenly. Now on the other hand, it seems every time her temperature is around 96, she begins these shaking episodes.

Last night she was running around and started to act funny.. she was tripping and falling all of a sudden. I assumed she was just getting really sleepy and losing her feet beneath her so I scooped her up. She clung snug to my chest and laid her head down.. I braced myself for a temperature fluctuation and held her, analyzing every bit of her warm skin... is it getting cold or hot? Finally, she held me really tight and started to whine - she stopped and then the tremors began. At first they started slowly, but then turned into very hard shaking.. much harder than I've ever seen from her from shivers if she's cold. We were outside this entire time. I didn't exactly know what was going on so I ran inside to start taking her temperature. It was 96. It only lasted for a few minutes.. It would get really intense and then slow down tremendously and then pick up again. This was around 7pm

She went to bed late and I expected and braced myself for another of our usual long nights together. At 1:30am I could hear her moan and start tossing around.. very quickly she began screaming frantically. I curled her up in my arms and held her close.. I wanted her to go back to sleep before she woke up too much. Just then as she relaxed with me next to her, her tiny body started shaking again. Slowly at first but then very hard shaking again just like before. I am starting to feel really bad for her during these spells, she's scared but silent the entire time. She wants to grip me as tight as she can because it's almost as if she can sense they're coming on.. I don't know if something is hurting her, if she's cold and shivering like I've never seen or what is going on. She is conscious the entire time.. not very coherent to the point I would trust to put her down to walk during these times, but she doesn't seem completely out of it as what I would expect a seizure to look like. They're happening every couple hours but like everything else that is going on, it happens without warning. The only thing I cannot relate this to are her fevers. Her temperature is normal during these which is odd. I can't quite tell if they come on during a sudden change because I haven't caught one to begin soon after I have last taken her temp. We will see.

Tomorrow AK is leaving to head out of town and I have a full scheduled ahead for the week. I am taking Annabelle to the pediatrician for another check-up and a physical to get cleared for Tuesday's Brain MRI. Dr. Young also wants to talk to me a bit more about the thought of Mitochondrial Disease. I texted her Saturday about this just as a 'Food for Thought' and she called me immediately. She said, "Ashley, you just really may be onto something woman! I have another patient with Mito and it took us YEARS to diagnose her.. the little girls family is taking out 3rd and 4th Mortgages and flying her all over the country for the best doctors to help treat this disease - it's quite difficult to understand and only a few doctors in the country actually specialize in it, but you're lucky - we actually have an EXCELLENT doctor at MCV that specializes in Mito! That's who my other patient is seeing and I think it's worth a visit to see her even if the MRI does indicate something going on." - So Dr. Young wants to chit-chat about the idea of Mito and hopefully we can get an appointment on the books to begin exploring that possibility. (If you want something to specifically pray for, or pray against... I would ask we pray Annabelle does NOT have Mitochondrial Disease.. that will be even more devastating news for my baby girl. Another invisible, chronic, painful disease with no cure. Please Lord do not let it be Mito!)

After our pediatrician appointment, I need to get the girls fed and back out the door and towards Midlothian for Mady's first Swim Lesson! She's so excited and I can't wait to see how much she learns :) Our day begins at 5:30am for both girls tomorrow so I can already see some Red Bull in my immediate future. Here's to prayers and fingers crossed we have an easy night tonight and the entire house gets plenty (MUCH NEEDED) rest! I pray we can get thru the next several days gracefully without daddy at home and the MRI goes smooth. I am always panicked about anesthesia, this will be her third time being anesthetized in 3 months - I think it's harder for me to watch than her to sleep for. I hope this week is easier on Mady than the last several has been and I PRAY we find answers for sweet Annabelle very, very soon. Preferably Tuesday!!

Saturday, June 29, 2013

I refuse to allow myself to 'Google' my child. I will not set foot in the deep, darkness that WebMD would tell me is wrong with my baby. There is no point. But one thing that I cannot shake, at all, are the words that keep repeating in my head when the Neurologist read off yesterday, "Mitochondrial Disease". The only reason this stick to me is because I see this label SOO often with other children that also have Eosinophiliic Gastrointestinal Diseases, specifically Eosinophilic Esophagitis. The more often I see children with both these combinations, it's starting to haunt me, maybe this is what we are dealing with. 

I have read two articles. TWO. That's it. You can research as much as you would like, please don't share anything scary with me. But I don't want to read anymore. This is the one thing I read: 
http://www.umdf.org/site/c.8qKOJ0MvF7LUG/b.7934627/k.3711/What_is_Mitochondrial_Disease.htm

The things that jump out at me are: 
  • Muscle Weakness and Pain, check and check - she's already been diagnosed with 'Low Muscle Tone' in various areas of her body, mostly her face. 
  • Gastro-Intestinal Disorder, check - EGID.. GERD.. you name it, we have a confirmed diagnosis. 
  • Swallowing difficulties, check - EoE. 
  • Respiratory Complications, check - Asthma and she also gets RSV every year. 
  • Developmental Delays, check - Her speech is at a 10 month old's level - we see a OT and ST every other week for these delays. 
  • Susceptibility to infection, check - Auto-Immune Disease. 
  • Fatigue - I feel like this is my baby each day lately. Some days/hours she doesn't want to get up, she only wants to lay down, usually on top of someone. And then other days she is full of energy and tries to play until she crashes. I think the fevers have a lot of play with that though.. but it's a separate thought if another doctor mentions Mito again.

I am in no way attempting to diagnose my child via the internet - but I would be lying if I said several of these things are not jumping out at me. It's makes it even more difficult to look past the other children that are suffering with Eosinophilic Esophagitis, also have this combination with Mito. 

The one super rockstar I enjoy following with EoE is Samantha, she is amazing and I love watching her journey unfold. I hope Annabelle can grow to be as strong and fearless as Samantha is. She also suffers from Mitochrondial Disease, and this short little video she made for awareness, explains a little about what it means.



Something else that I noticed this morning as Annabelle was laying on me in only a diaper. Her skin has suddenly begun to develop bumps.. I can't quite tell if it's a huge eczema flare, an allergic reaction to getting exposed to something, or what it is. It's covered her chest, arms, heavy around her neck and all over her forehead. I couldn't seem to find it in the usual eczema hiding places (behind her knees, on her legs, in the crease of her elbows) it's only on her chest and the front of her body. There is a little of the rash around the back of her neck and top of her back, but not nearly as thick and noticeable as it is in the front. Im certain this wasn't here a couple nights ago when I was giving her a bath, I would have noticed it then. I'll keep noting it and see if it spreads. I can't recall anything she's been exposed to beside at the hospital yesterday, that was the first time she's been out of the house. It's odd. 

Also this morning, she repeated the episodes of shaking. I went upstairs to check on her during her nap and her whole body was trembling in her sleep.. her temperature is 98.5 so I know she isn't cold, she's just shaking. A couple minutes later it slowed down and stopped. She hasn't had cold sweats in a couple days, and she doesn't seem clammy. I probably need to start taking her temp constantly to see if these tremors are because her temperature is fluctuating fast, or if it's just happening out of the blue even when her temperature is staying the same. 

Currently. I'm spending my morning re-organizing paperwork, FLOODS of paperwork and bills that are piling up from hospitals and visits. I usually stay very organized, but the last week has had me pulling random reports from my book for random doctors and last minute faxes, I need to pull everything back together today.

Im also trying to reconfigure our organization for all Annabelle's medications and formula's. My castle, that we call home, is getting smaller and smaller by the minute it seems! :)


Here's my poor, poor sad living room this morning. Must add more coffee.

Another disappointing day behind us.

Driving towards MCV yesterday afternoon, with a happy baby buckled tightly into her carseat behind me.. I tried my hardest to bring myself to a better place...

...All I could think about was the morning we were devastated about Annabelle's Eosinophilic Esophagitis diagnosis.... 
That morning on the way to work, before the phone call came in, I had all the hope in the world for my daughter. I had hope that she wouldn't have this disease, I still had hope that biopsy's would come back normal and she would be 'ok'. I spent those last several days dwelling on the worst case scenario (that we're currently living) instead of appreciating the ignorance of the disease we weren't confirmed with yet. I wish I could go back to myself that day, and all the days prior and tell myself to appreciate the feeling of 'hope and promise' that life as you know it may just be better than your worst case scenario. After that 7:30am phone call, my life has never been the same and never will be. My life was changed that morning forever by the news our Gastroenterologist confirmed by Pathology reports. I can never go back to the way I felt March 27th, because of the news I heard on March 28th.

Driving on 95N yesterday towards MCV, my heart is in a million pieces and my stomach is in knots. I hurt so bad because I honestly have NO clue what a doctor is going to tell me. I am clueless what is going on with my child, the only thing that will bring me comfort is someone to tell me "She's fine!" and all this over.. but I know that isn't a possibility. Anything less than that isn't welcoming to my ears. You never want there to be something wrong with your child, I never in a million years thought it would be mine, and here I am living this nightmare. As much as it's going to kill me hearing the words, I know I need to push hard and find the right doctor to tell me what's happening, for Annabelle's sake.

I take myself back to that horrid day in March. I wish I enjoyed the ignorance of the unknown before the doctor called me with the news. I had reasons to smile and hope, and here I am driving on 95 upset, and I have no reason to be yet. I decided to put on a new hat yesterday. Annabelle was enjoying herself in the backseat. I decided to crank up the music to her new favorite song and the two of us danced like crazy people while navigating downtown Richmond towards the Children's Pavilion Valet. I have plenty time to be upset after I learn what is happening, I can't lose focus on being sad now.. right now Annabelle needs me focused, smiling, and motivated to keep fighting for her. Faking that emotion is harder than anything, but I know it's important. And to be honest, listening to Randy Houser and dancing like a fool with a giggling little girl in the backseat, was much more fun than allowing my mind go to dark places in silence.

When we parked, I began unloading half my car for the appointment: Annabelle's books of medical records, my own personal notes, etc. Diaper bag. Gigi & Lambie. Annabelle that wouldn't walk. My cell/keys and pepsi that was an essential first meal of my day. Mom works at the Nelson Clinic next door to the Children's Pavilion so her and AK met me in the Neurology waiting room as I was checking in and filling out paperwork. Annabelle seemed to be in good spirits :) Sometimes I wish she would look her worst when we see doctors, but you know, at this point I don't ever wish her to have any bad times. I know there is something wrong, her bloodwork and records indicate we have issues.. I pray we only have good times, so I could care less what her face-to-face impression is to a doctor when she is smiling, I never want to wish those smiles away.

We started with vitals and she showed the nurse just how to do everything. Blood pressure cuff, stethoscope (side note. She loves this thing, and the pricey thermometer, she's asking for both things for xmas), temperature, weight, height etc. Did I mention I love seeing my little girl smiling?!

We didn't wait long in our room before Dr. Seinfeld came in to visit us. I explained the situation and the story to her, she seemed understanding and concerned, however, she seemed less than helpful for helping Annabelle. Just like every doctor - she doesn't think this is her area and Annabelle needs a Neurologist. My jaw fell to the floor. We spent a good amount of time talking with her and it wasn't all bad, but it wasn't helpful or getting us anywhere either. Couple highlights:

  • Birthmarks: She took notice to Annabelle's birthmark on her back and asked if she had anymore. She has several in her head and on the back of her neck. Most all her birthmarks are on her head and fortunately for her, are now all covered with hair. 
  • Mitochondrial Disease: At first when Dr. Seinfeld offered this possibility, it rubbed me wrong and ticked me off that she would mention it. She threw this at me by saying, "Sometimes we know there is something wrong but we do MRI's, Scans and can't find out what's wrong, they end up with a diagnosis of Mitochondrial Disease.. we don't know exactly what's wrong, we just know their 'Power House' isn't working properly". It made me mad that she said this because I took it as, 'I dont know whats wrong so let's slap the kid with a catch-all label and be done.'. 
  • She doesn't believe we are looking at something as significant as cancerous tumors on her brain. Annabelle hasn't suffered seizures that we know of, she wasn't showing any signs during the exam at the office. Based on the bloodwork, there weren't any indicators this is what's going on. But on the other hand, we always have to keep in mind that she has an Auto-immune disease that prohibits Annabelle from having textbooks signs for what is going on. Having a normal WBC Count isn't out of the ordinary for these EGID kids. So we have to take it with a grain of salt. We won't know anything until Tuesday's MRI.
  • She sympathized and apologized that she can't help get us answers any sooner. Which is crap. If Annabelle were admitted, we would have an MRI scheduled and performed immediately. It drives me nuts when people think I am an idiot in this medical world. Dr. Seinfeld won't admit her because she truly doesn't believe Annabelle's issues are Neurologically related. So much so, she didn't ask us to book a follow-up appointment unless the MRI indicated any abnormalities. 
  • Brain tumor vs. Brain development. This is the thing that made my stomach sink the fastest. Since the first two doctors mentioned getting an MRI to make sure there 'isn't something there', I have only considered a tumor (and were going to believe, completely benign). I've never considered her brain isn't developing correctly or normally. That isn't something that can't be removed or easily fixed. That scared me. This possibility weighed higher on the scale of possibilities than there being a tumor, under Dr. Seinfeld's opinion. Again, hopefully the MRI Tuesday will tell us everything we need to know. 

When I left the Children's Pavilion with Annabelle in my arms. I was very discouraged, I felt like I had another door slammed in my face - another doctor tell me something is wrong with my child, KNOW something isn't ok but still won't put forth the effort into helping her. Dr. Seinfeld wants us seeing a Endocrinologist immediately if the MRI is clear, which was scheduled late yesterday by the Pediatrician - July 9th at 9:30a, MCV Endocrinology. Next after that we will see a Geneticists.

I asked AK to take Annabelle home and I wanted to visit a sweet friend that has a little girl on the Pediatrics Floor, experiencing some similar issues to Annabelle in the GI world. She is seeing a flood of doctors left and right, I am so happy she is getting the attention and help she deserves, it also gives me an insight on what we would be getting if we were also a patient on the floor. If Annabelle were admitted, she would be seeing every single one of the doctors she needs within hours. While I was visiting my friend, she had me speak to the Social Worker on the floor. We chatted briefly the issues I was having with getting Annabelle the attention and help she needs, and she put me in touch with Patient Relations - my next step = I am getting Annabelle a Patient Advocate as we move further. I am done with everyone dropping the ball on my daughter. If nothing else, the next time I have to rush Belle to the ER, we will be seen, get the tests we need and admitted.

I got home last night after my visit and was completely monotone, in shock, upset, feeling defeated again and motivated more than ever. It was quite a combination of feelings, but the result of all of them was that I just wanted to go to bed without eating and sleep the night away. I didn't want to do that to my kids, I've missed Mady and Annabelle was seeming to have a good afternoon so I wanted to make the most of it. I called a friend in a pinch and asked if her little girl wanted to come over and play with Mady - I'll throw turkey burgers on the grill, she offered to bring the wine and we made it happen. The night was great. I was distracted from the day, my house was full of giggles and our friends were next to us.

Annabelle started going downhill soon before they arrived, she wanted to be held and not put down. She turned her head away from people every time they would look at her, she pouted and clung tight to my shirt as I sat with her on the couch. I didn't push and we took it really slow and easy with her for the night. Once I watched her temperature for a bit, I laid her down to bed and she went right to sleep. The girls were playing, we had a mini dance party with 4yo's strutting their best moves in my living room and I poured myself another glass of wine and cheers-ed our friends. Around 10:30 - 11pm I heard a scream from upstairs, just like clockwork, something was wrong with Annabelle.

AK brought her downstairs and just her appearance scared me more than usual. Her skin was pale, almost purple, but her cheeks were flushed bright red. It was very odd. She felt very cool and her entire body was shaking. Oh God she was shaking so hard! It took everything I had to keep her still and hold her tight. I asked for a blanket quickly and the thermometer .. we also needed Lambie stat. She laid on me screaming and shaking as I took her temperature, it was fortunately 96. I don't know if that meant it had previously been really low or really high, I had no way of knowing. All I knew is that she was hurting - her face was full of tears and her little body couldn't lay still. She wasn't comfortable in her own skin, she was hurting, she was shaking, she was clearly scared to death as she gripped my shirt as tight as she could, crying into my cheek and ear. I didn't want to cry in front of my friends. In fact, I haven't cried during this entire ordeal yet. I can't let a tear drop because I don't know if they will stop. I can't lose focus. Holding my baby girl in my arms, with dear friends watching me from across the room, the only thing I knew to do was rely on what I do best - sarcasm. "Oh it's ok friends. She's 21 months old, she's just testing her boundaries right now." They looked as entertained at the statement as I was when the damn doctor at St. Mary's said it to me. My poor friends faces showed just how helpless they felt, as I do every single day. We had a room full of people that love Annabelle with all our hearts, we all want to help her and no one can. Annabelle laid there bawling her eyes out until she finally calmed herself down to relax laying on my chest. She was soo tired. I hate nights like this for her. She's so exhausted, you know she just wants to sleep. But she can't, she can't rest because of the pain, she can't relax because of the fevers, she can't smile and play like a normal little girl because she just doesn't have the energy to do it. My God she needs prayers answered! She needs help!!


We got Annabelle back in bed shortly later. She fell right to sleep and repeated the same ordeal during the night, crying and whimpering often every couple hours. This morning she is very tired. Her spells of energy are becoming shorter and shorter. If she wants to play or laugh or annoy her sister, she tries to - but soon after she lays on someone and doesn't have the energy to get up and continue. After repeating this cycle over and over this morning, I finally just laid her down and made her go back to sleep. She needs the rest and sleep, I know she doesn't get it at night like she should. I always want to know for sure if it's just being tired that is making her act this way, or if this is something I should be documenting. Once she wakes up, I will be able to better read and understand whats going on. It's been two-three days since our last symptom presented itself, were due for our next one anyway! (Que the sarcasm and rolling eyes).

I would like to get her out of the house today if she is up for it. I don't take Annabelle out of the house at all much anymore because of the last several weeks issues in addition to her poor immune system. She needs the sunshine and fresh air though. If she seems up for it in a bit, we may try to make a trip out and enjoy the day a little. I know Mady wants to get out too. Heck, I could use the fresh air any chance I get as well ;)

Friday, June 28, 2013

Heading to the Neurologist TODAY!

New change of plans.

Pediatricians office called MCV Neurology late yesterday to discuss changing the Tuesday appointment, she asked to speak directly with a doctor and was able to get Dr. Seinfeld on the phone to briefly discuss Annabelle's situation. Dr. Seinfeld gasped and asked when she was currently being seen. When she learned we wouldn't be coming in until next week she said "That's too long - bring her in tomorrow!"

I'm not really sure where this leads us nor do I have any clue what this means for our MRI status. I am extremely hopeful that when we meet Dr. Seinfeld today that she will admit or at least expedite this MRI.

I did speak with my resource at MCV Radiology re: pushing up the MRI. The soonest we can get Belle in isn't until August as an outpatient. She found a slot next Friday. See, the isses are: Outpatient slots are far fewer than inpatient slots. On top of that, Annabelle needs to be sedated to have the MRI, so finding a slot for an MRI with sedation is even longer of a wait because that availablility is even smaller. I guess, all things considered, next Friday is actually probably a really fast date. However, we still have our MRI scheduled for next Tuesday at St. Mary's, and if we can't get one sooner than that - we will be at St. Mary's Tuesday. All that confusion to say - I hope Dr. Seinfeld can pull strings to move all this up faster. If not, Tuesday isn't that far away.. and to be honest, it gives me more time to breathe before learning if/what is on my daughter's brain. Just the thought has me physically ill, so I am finding the silver lining in waiting until Tuesday. However, for Annabelle's sake, we do need to know ASAP what is going on. I am leaving it all up to the doctors and big man upstairs to guide the next steps.

I don't know what I am hoping for. Part of me wants to know that these issues are a growth on her brain, that it's completely benign and can be removed. Once it's removed, all this can be behind us and we move on about life without having to live these nightmares ever again.

The other half of me wants to see absolutely nothing what so ever, in my daugther's noggin'. It terrifies me beyond belief. But if nothing is there - that leaves us with more questions unanswered. I want all this over as soon as possible. I want to be able to give my little girl relief immediately and not spend the next several weeks scratching our heads to figure out how to help her. This isn't fair. No child, or anyone for that matter, should have to go thru sturggles like this. Both my little girls deserve a break. My heart truly needs a break from pounding out of my chest 99.9% of the day.

Annabelle had a wonderful day yesterday and seemed to be doing well this morning. Last night she was alright until we got closer to bedtime and her temperature took a jump to 100 pretty quickly. The sudden change slowed her pace down pretty quickly. I gave her a bath and when she got out, she fell multiple times while trying to walk so we decided to take it easy. She ate well last night and ate this morning a little bit. She is due for another temperature spike or drop and I am nervous it will happen before we can get to the hospital today. I hope she can wait until we're at least there so they can see what happens.. and I won't be left alone with a critical child and clueless as to what to do. We will see.

So today will be eventful, and I have no idea what to expect. Stay tuned. I will try to update as much as I can as the day goes on.

Thursday, June 27, 2013

Here's how my day went yesterday:

Phone call
Coffee
Phone call
Panic - Annabelle's fever is dropping
Phone call
Coffee
Phone call
Schedule an appt
Phone call
Phone a friend for help
Check on Mady
Phone call
Call the GI, leave a message
Call Hospital
Call Radiology
Panic - Annabelle's fever is spiking
Phone call
Phone call
Respond to texts, thank people for help, send love to those that are melting my heart with selfless love for my baby girl
Phone call
Shower
Phone call
Phone call
Phone call
......

Trust me, there were a LOT more phone calls in there ;)

There was a lot of scheduling that was being done yesterday. I touched base with our pediatrician and her amazing team of nurses working for her many times during the entire day. She was working on scheduling the soonest MRI and also the Neurologist. I was doing the same, but by using my own resources and 'who knows who.. and who can pull which strings' / type of deal. We kept each other up to date with the changes we were making throughout the day.

By last night we had an appointment with the Neurologist at MCV Children's Hospital on Tuesday at 10am. We also had an MRI scheduled Tuesday at St. Mary's at the exact same time. I refuse to let go of either of those appointments and kept them.. my goal all day was to have an MRI scheduled before we see the Neurologist. I ended up getting in touch with someone high in Radiology and explained how upset and desperate I was to get my daughter care right away. I told her that we were seeing a Neurologist at MCV but I was sent on my OWN to get an MRI elsewhere before the appointment, that is NOT ok! The poor lady poured her heart out to me and said she will try her hardest to pull strings and see what she can do. I hope my sob story worked.. I need Annabelle seeing that Neurologist Tuesday, but I want that MRI first. I did confirm that when we are finished with the MRI, I will be able to leave the hospital with the disc to take straight to our doctor at MCV.

There were SO many other conversations that were exchanged throughout the day between various hospitals and doctors. I touched base with St. Mary's several times to go over the long questionnaire for anesthesia (since Annabelle will have to be completely sedated for the MRI). I wanted to speak to our GI for some odd reason, I think I was desperate for another MD perspective, and I just really wanted to rule out this being a GI concern. His nurses (all of CHKD) are truly so amazing. We discussed the story several times and he finally called me back and we talked for a while about Annabelle. He was puzzled and we discussed the possibility of this being a reaction from the Elemental Diet she is on, he said we would not be seeing symptoms like this. I asked if there are any concerns after the last scope he performed and he said, "If this were appearing a couple days after the scope, maybe, but not 4 weeks later. This just cannot be GI related... I can't agree more Ashley, I think you need to be in with a Neurologist immediately and begin scans. Also know, we do have a great Neurology team here if you ever need second opinions". It was reassuring to talk directly with another doctor, and I felt better knowing this absolutely cannot be EoE related. . . well, maybe I didn't feel *better* but I did feel like I am definitely heading in the right direction.

Monday I have an appointment with our Pediatrician for Annabelle's physical so she can be cleared for Tuesday's MRI. I am hopeful we can have that moved up before then, but the phone calls aren't coming in fast enough to tell me so. Fingers crossed.


Annabelle did well yesterday. Her temperature began fluctuating a little before her first nap, and we took advantage of her feeling 'tired / weak' and laid her down. Her temperature never changed during her naptime and she got plenty rest. My grandmother showed up around 10:30am with a bag of snaps, cucumbers and fresh veggies from the garden. She had her toes in the dirt that morning and came by to give us a break. Gosh I love that woman. She demanded I go take a shower and enjoy a lunch. I did need to eat, I haven't done so in days. And good gracious did I need a shower! lol. It took me two hours from juggling phone calls until I could break to take a shower... with my phone next to me on the towel rack in case a hospital called! I then took two hours with a towel on my head before I pulled myself together enough to walk out the door. AK and I had good intentions to enjoy a nice lunch, but the second I got in the car, I didn't want to drive far from Annabelle. My phone wouldn't stop ringing so I told him to just take me to Target to pickup the essentials I have been needing and then let's go get Mady. Gosh I missed her! I walked around Target completely silent. I bought the three things I needed and left without spending $20 (now we know there is something wrong!)

I feel like I am walking around in a haze. Like everyone is walking past me with healthy children and laughing and playing. I want to tap them on their shoulder and say, "Squeeze your baby. She's healthy". When the checkout lady asks, "Hi! How are you today?" I respond with a sincere smile and say, "Im doing well, How are you today? It's really getting hot out there, huh?" I feel like I am lying to everyone by wearing a forced smile on my face. I won't listen to the radio. K95 or 93.1 I can guarantee they aren't playing anything I want to hear right now. Im just numb. I am walking around like the biggest liar, faking happy smiles and playing tickle monster every chance I get. 

When we left Target, we headed straight to get Mady. I sat on our friends couch and we discussed briefly what was going on. I was so tired.. it hit me like a wall as I sat there with Mady under my arm and my feet curled underneath me. I guess the warmness of their home and the comfort of a good friend was just enough to make me exhale.. except I really wanted to fall asleep. lol. I was so happy to have Mady with me again though. I've really missed that little girl and I know she's missed us. You can really tell all this craziness is starting to hit her and she's putting her guard up. I just hope she understands that we are doing the best we can to help Annabelle and love them both so much. Soon all this will be over and life will resume into our normal chaos, but right now, Mommy needs to take Annabelle to lots of doctors to get her help. I know she can't understand, so for her sake, just as much as Annabelle's, I hope this ride of hell is over soon.

When we got home, the storms began to roll in. We had some great storms last night.. but of course, in the middle of them, Annabelle began to spiral downhill. She was playing just fine and then ran over to me as I sat on the couch looking out the window. I am a sucker for a good storm, the louder the thunder, the better :) I thought maybe she was scared from the storm, but then she wouldn't move. I checked her temperature and it was around 95. I didn't know what was next. Is it going up or down? I asked AK to get another thermometer and start checking it. It went up.. 99.. 101.. 102. I checked it rectally and confirmed. It didn't drop last night though, fortunately. It just spiked pretty fast and remained around 100. Annabelle laid on me for about 30min until I felt it was ok to try to get her to bed. I don't like laying her down if I am anticipating her temperature moving again, but after 30min I thought it was ok. And it was for the night.

Today I hope to make headway on appointments and get them moved up. I hope we can safely make it the days until we see a doctor.

I'm emotionless but focused.

Im numb.

Im emotionless because I don’t know what to think. If I start processing everything in front of me, I will drown in sorrow. I can find myself in the deepest, dark hole by just sitting in the floor with my little girls playing, and not three minutes later, I have a baby screaming and hitting herself. If that doesn’t hit you with a flood of heartbreaking reality, I don’t know what does. The hardest part is fighting for help and getting a door slammed in my face. If this were for myself, I wouldn’t care and I would just move on.. but this is a non-verbal little girl that needs help! This is my daughter, and not at her expense will someone overlook a sick child! I know it happens all the time in the medical field, but not with my daughter it won’t.

People used to tell me, and I always heard, “Mother’s intuition knows best.” I never thought I had it. Honest. My mom does though. She called me once, late late one night worried, “Are you ok? Are you sure? How about the baby? Something isn’t right. I called your sister already and she said they are fine. Go check on Mady.” I laughed when I hung up the phone.. Mady was fine, she had been in bed for hours asleep and I was watching a movie. I sat for just another minute before I felt guilt that told me, ‘Ashley, go check on Mady. Listen to your mom.’. I went upstairs and found Mady shivering with a temperature thru the roof and her crib covered in vomit. HOLY CRAP MY MOTHER IS A FREAK! My own mother’s intuition on the other hand sucks. I would have went to bed and slept peacefully all night.

When Annabelle was born, I don’t know if I was in kinda the same mindset as I am now: shocked we were in the NICU – my baby was born too early – Im sad that my body failed her and kicked her out far too soon. Something just made me fight to help my daughter, but not emotionally curl her up in my arms and just ‘bond’. When I did start to do that several weeks later, something always felt wrong. I told AK many, many times – something isn’t right with Annabelle. I didn’t know what it was and I couldn’t put my finger on it. Something just never, ever felt warm, comforting and ‘okay’ about raising her. At only a couple weeks old, we began having several GI issues. We discovered the allergies and I stopped breastfeeding and we moved her to a Hypo-allergenic Formula. It was actually Elecare, the same as we are on now, except we’re using Elecare Jr. I kept trying to tell myself that I figured out what it was when we learned about the couple GI problems and allergies.. until she was a year old and we began new issues. For 9 months we battled various reactions to foods, substances, seasonal changes, etc. I tried my hardest to be patient with the slow treatment we were attempting with the allergist. I pushed hard to have the most ‘normal’ lifestyle for Annabelle. The harder I pushed for ‘normalcy’ the more sick she got. The more foods we allowed her to have, the more ill she became. Finally from January – March, Annabelle got sick and never recovered. We did three rounds of heavy prednisone, she took two antibiotics for two months without relief. Her weight was dropping, she wasn’t eating without choking and her immune system was spiraling out of control. That is when I finally lost myself in our GI’s office, early one morning and yelled at him to help her. A week later we had our first official diagnosis. Once those words were read off, I knew ‘normal’ was out of the question from this point further for my daughter.(What is normal by the way? Who the hell gets to decide what that definition is? We are making our own definition of normal in our house as each person and family should do the same. I give up expecting everyone should be just the same ‘normal’, no one is. I’ll be damned if I tell my kid she isn’t!) I’m now aiming to shoot for the best ‘Quality of Life’. I wasn’t finding the support and help for the mission I was on for Annabelle in Richmond so I moved her care to Norfolk. I didn’t want tubes started, I wanted my daughter to have birthday cake on her birthday! In March, I really felt as though I can relax as Annabelle’s mom. I have found her diagnosis that I have been looking for since she was born. I can now live life and enjoy her for who she is. As ‘different’ as our life became during those first few weeks, somehow I found peace in knowing that I have full control of her care and I understand 100% of what is happening inside her body and what I can do to help. Now, don’t get me wrong, I don’t know everything, hell I probably don’t know 10%, but I do have a flood of amazing resources, friends living with EoE and incredible doctors, that when I need help or Annabelle has issues, I at least know where to go and what to do. THAT I have control of. When I need answers, I know who to use. And that is comforting.

That feeling of control and relaxation was short lived. Within weeks of meeting our next GI Specialist and Allergist in Norfolk, Annabelle began this flood of curve balls. I am back to that feeling again, I guess we can call it “Mother’s Intuition”. I never really understood what that felt like, but I do now. It feels empty. It feels helpless but it comes with the mental equillivance of 50 RedBulls of motivation to fight. It comes with a sense of fearlessness. It feels like your heart is sinking in your stomach, but sitting in your throat and pounding out of your chest the entire time. It’s blinding, deafening – it makes you beg, fight for things when you can’t physically see, hear, or touch what you are feeling inside. It’s silent. Just like the good Lord that is giving me hope, motivation and direction. It’s so silent. It requires me to stop thinking and just ‘shut up!’ so I can refocus and hear what it’s tell me to do next. Two invisible, silent things are driving me – Mother’s Intuition and God. I never, in a million years would have guessed I would be using those two things to help my daughter get well, but they are my most trusting sources at this point. The only two things that haven’t failed me yet, and two of the most terrifying sources – that if I turn my head away, I may get derailed so quickly I lose control. Slow Down, Pay Attention, Refocus and Keep Moving.

Wednesday, June 26, 2013

We're getting more clues, but not more answers.

I balanced doctor phone calls and work meetings - text messages, forwarding medical records, emails begging for someone to see Belle and also wrapping up projects at work that are coming to a close. I swear, after yesterday by 2pm, even I was utterly impressed with MYSELF for accomplishing so much! lol (I like to give myself pep-talks when I can). I wasn't making much headway with getting new appointments or being seen anytime soon - Dr. Kumar is actually sick and out of the office, which explains why I haven't heard back from the Endocrinologist. I moved back to my mom at MCV and asked her to see who is second best and what I should do - the soonest appt. at MCV is in December. I yelled, "She'll be dead in December!" I didn't mean to sound so abrupt, but that's the first honest thought that came to my mind. This kid is spiraling downhill and cannot/will not wait until December. She told me our best bet is to go to the ER - I declined. I'm not doing that, I won't go until there is justification they will see her and began floods of testing and not just kick her out the door. I have Mady at home that is also a top priority and I can't leave her.. gosh I miss that little girl.

Around 3:30pm I get a call from our sitter, I pickup the phone, "Hey girl, I'm in a meeting, what is going on?" She sounded panicked and I could hear the shaking in her voice, "Ashley somethings wrong, I took her temperature and it's dropping fast, she isn't acting right, you need to come now!" I didn't think twice, I slammed my laptop into my bag and booked it out the door. On the way home to get Annabelle, I called the pediatrician on her cell, "Hey there. It's go time - call MCV and tell them we're on the way. Her temp is dropping again. . .do we have any lab work results yet?" Dr. Young stayed on the phone with me the whole time as she searched thru incoming results, "Oh yes! They're starting to come in.. let's see what we have..... WBC, normal. Thyroid, normal - wow(!). . . . OMG ASHLEY GET HER TO THE ER NOW! Her Platelet Count is thru the roof! Im calling MCV. Get her in now!" 

I picked up Annabelle and the sitter explained her behavior during the temperature drop, she said she got very sleepy and just stopped reacting normally.. Annabelle was trying to get up but just couldn't move. I could tell she was shaken and I was remembering the panic in the doctors voice just 2min prior - I needed to get out the door stat. But there was Mady - begging for mommy's attention, telling me everything she knows that will make me happy, "Mommy, I kept my underwears clean all day! Are you proud of me?" "Mommy, Mommy! I drew you a picture, do you love it? Can I show you?" "Mommy.. please don't go....." This was the second day in a row that I've rushed home to gather Annabelle and flew back out the door leaving Mady in my dust. I love my daughter's equally .. but Mady is my Mini-BFF, I hate having to continue to abandon her, it breaks my heart. Seeing her sad, pouty face is painful and she doesn't understand. The only thing I can do to help her thru this is to keep her distracted and having fun. I do this by passing her around like a hot-potato between awesome friends... Mady has been a VERY lucky girl to have lots of sleepovers lately :) She's been visiting a lot of friends and having a lot of fun. I hope she is seeing it this way, and not that mommy and daddy are not with her. I miss her though, and it's breaking my heart. Annabelle misses her sissy, but I won't have both girls in a hospital - that's gross and just not an appropriate place for a 4yo. Nor do I want Mady seeing Annabelle in the hospital. It isn't necessary. 

On the way to the hospital I talked to a friend briefly before hanging up to navigate the chaos of Broad Street and the construction of 11th Street, etc. During that time, Annabelle had been talking to me when I looked back in my mirror and she started dropping her head.. I could see her trying to open her eyes but couldn't lift her head. At one point she sat up, but by the time I got into the parking deck, she was out again. I ran to the side of the car to pull her out and she was limp - completely unconscious. I laid her down to make sure she was still breathing and she was.. I scooped her up and ran towards the Pediatric ER where everyone was waiting for her. By the time I made it thru the door, she was starting to wake up and sit up.. still very disoriented but at least conscious. 

We checked her weight and vitals - I met a nurse and a couple doctors right away. We began an IV which fortunately only took one stick - the nurse was amazing that began the IV - I was shocked she got it right away with no issues. The entire process took about 20min though.

When the doctors and I started talking, they were baffled that her WBC (white blood cell) and RBC (red blood cell) count were normal but her Platelets were so high. They kept saying, "there may have been an error .. something may not have come back correct", we decided to reconfirm everything just to make sure since they were hesitant. Two hours later, all labs were back and they all confirmed the exact same, her Platelet Count was still shy of 700,000 and they want numbers no higher than 400,000 for children her age. 

We met one doctor and he was wonderful beyond belief. He asked so many questions that brought to light many things I hadn't considered. 
  • My pregnancy complication - Hyperemesis. Very high AFP Levels, Initially indicating Spina Bifida. Pre-term labor. Several unsuccessful (chemical) pregnancies before carrying Annabelle.
  • NICU - GI Issues during NICU stay. Stomach not emptying. Not moving meconium until day 4. 
  • Family History of a laundry list of health, genetic, and Endocrine issues.
  • We were at the zoo not long ago - she fed birds(?)
  • The Elecare Jr and Neocate Nutra were new to her diet and started shortly before all this began
  • Her upper and lower endoscopies were performed right before all this began
There were a lot of things that we tossed back and forth together. He was passionately concerned about Annabelle but truly didn't know where to begin. His biggest concerns were seeing a Geneticists and a Neurologist. He didn't see as many Endocrine concerns but definitely didn't rule out the need to go that route as well. His biggest concerns were the fluctuation in temperatures and symptoms that weren't disappearing but just adding on. He wanted her admitted, if nothing else for, "Failure to Thrive". He left the room and I felt like we were on a good track.

Then another doctor joined us about an hour later, I was expecting her to give us information about being admitted, instead she starting telling me things to do for fevers and to keep an eye on her.. I was confused, "Hold on, you're not admitting her?" Suddenly the ER had a change of thought and said, "Bloodwork is normal" - Wait, how?! There's nothing normal about that! You said it yourself hours ago! What about her high temperatures?! The doctor told me to just use Ibuprofen like we've been doing. What about the low temperatures and losing consciousness? - Wrap her up in blankets until it comes back up. "So you're really telling me that you're going to send her home like that and not figure out whats going on? Not one test? You've done nothing here but reconfirm the bloodwork we already had done yesterday!" She apologized and said they just won't admit her. I demanded she go back to the drawing board and try again. I can't leave this hospital with Annabelle on a good conscious, something is wrong with this baby and you know it! You cannot tell me she is ok, you need to figure this out! The doctor said that because it didn't appear life-threatening, they cannot justify keeping her, that she can wait for an outpatient visit. Freaking incredible.


Midnight the same doctor came back in. She apologized. She called several different departments trying her hardest and demanding to speak with the attending (is that right?) and even they denied keeping Annabelle. The problem with Annabelle's case is that she does have an issue, but we have no clue where to begin or where she needs to be directed - Endocrinology? Neurology? Genetics? Pediatrics? We have no clue, we don't know because we haven't tested - but because nothing is confirming one department or another, no one wants to pick her up to take on the case. And since no one wants to take it, we were sent home.

I drove home last night numb. My mind keeps going to a very scary place where I start to think, "Maybe I am over thinking some of these things.. maybe there is nothing to work with and she is fine. Maybe I am putting Annabelle thru this.... enough doctors have thrown in the towel on her, I should just listen to the professionals and take my baby home and just enjoy life with her... " - Sleep deprivation will make you think crazy things like that, so I've learned. 

When I was almost in my driveway with a sleeping little girl in the backseat, my phone rang. It was after midnight and my pediatrican was calling my cell. She was worried and wanted to know how things were going at the hospital. When I told her we were home, she was mortified! I asked her exactly what I had just been thinking the entire way home, and if Annabelle was really as sick as I was fearing she was. I haven't slept in weeks and to be honest, my mind is just shot - days run together - I can't remember to do simple things to save my life and second guessing just how bad some of these issues are seem to be haunting me. The words my doctor started to recite, quickly brought things back into perspective and reminded me that she as a mother, and as a doctor was concerned as much, if not more than I am. I started to get worried again, and I remember, "No Ashley, you're not crazy. Annabelle was very unconscious and not just heavily sleeping when you arrived at MCV" .. I started to vent to the poor pediatrician over the phone, "What if this high platelet count is because of a tumor, and we've never done one scan to make sure she's clear!" She paused for a while.. I asked her why she wasn't talking and she finally confessed, "Ashley, please don't worry because I don't want you to panic at all. My biggest concern about what Annabelle is going thru is that her temperature regulation isn't normal and her growth is odd. These two specific things raise red flags to me for one specific reason. The Hypothalamus regulates your body's temperature. The Pituitary Gland produces your growth hormone. Both of these things are located next to one another in the brain. High Platelet counts can point to tumors - The first concern I had initially was this, her bloodwork that came back is not giving me much reassurance that this is not what we are dealing with. Ashley, please do not take this worry onto yourself, but do not overlook the severity of what you are dealing with. You are fighting and doing everything you are supposed to. At this point, since Annabelle still has not had any scans or tests, and it doesn't seem as though a hospital is going to give you the attention Annabelle needs - I will just do it myself!" I was shocked when I hung up the phone with Dr. Young, but I appreciated her honesty. I am not terrified, or worried. I know if I start googling my child - I will find the exact same thing, so I can't be upset that my pediatrician confirmed what the internet would tell me. I love that she is staying on top of all this .. more than I am. Because the last thing I will do is WebMD my kid. She does need attention though and thank God I have a great doctor on my side and fighting for her. I certainly cannot do this alone. I don't know how to fight this battle, I am trying and I am learning along the way - but I am in over my head. I feel like my pediatrician is my best medical advocate right now and thank goodness for that. She is a great mother to an infant little boy and a wonderful passionate doctor to my little girl. I can't ask for anything more for my daughter.


When we got home, we plugged in Annabelle's Angel Care Monitor in case she stopped breathing. I was certain I wouldn't sleep last night. How could I? What would happen if her temperature spiked or dropped during the night? I could never forgive myself if I am downstairs sleeping and Annabelle is upstairs in danger. Gosh it was a miserable night. I think I slept in 30min increments. I stared at her on the monitor all night.. I made sure she was wiggling around. I couldn't rest knowing my daughter needs help. I couldn't wait for the sun to come up so I can get up and begin the next day of fighting for help.

Mom and I talked first thing this morning. She will consult with some more Endocrinologist and see how far she can get. I don't know how successful it will be, but it's worth a shot. I also talked to mom, which is a nurse btw, and ran the tumor/growth/brain issue by her and she also agreed that is her biggest concern about what is going on (why don't people tell me this?!) We are all on the same page that we just want this possibility ruled out. If we can rule something like that out, I think we will all relax just a bit. But until then.. too many red flags just keep bringing us back to the same concern.

I called our GI at CHKD and wanted to at least get their opinion or insight on what is going on. I wanted our GI to be updated with the latest on her condition. And although I know this doesn't seem incredibly GI related - even if they can offer another perspective, that is welcomed. These things began soon after her last scope.. her formula is new to the diet.. lack of actual food is a change.. all things that *who freaking knows!* could be contributing to whatever is happening. The nurse did discuss with me, that when we come down on July 16th to begin Patch Testing that Dr. Konikoff wants to definitely see Annabelle at that time, so I will add that to the calendar. Back to today's issues - she is going to discuss with Dr. Konikoff what is going on and get back with me soon.

I texted our Pediatrician around 7:30a, "Belle is still asleep fortunately, getting plenty rest. I don't know where to begin today. Endocrinology? Neurology?" She called me right away and like the golden woman she is, she told me, "Hunny, go relax and squeeze that baby. Get rest, drink coffee, let me do the work today. I have a team in my office and their only focus is getting this addressed. We won't stop until we get answers we are both happy with. Trust me."

She called back 15min later and said, "Get a pen. Ready? MCV Children's Hospital. Next Tuesday at 10a you're seeing the best Pediatric Neurologist the state has to offer. Stand by, I am working on an MRI now." I asked, "Do you think it will be soon? A couple days, next week?" She told me, "Ashley. Go get a shower and get ready to jump when I say 'GO', got it?" Yes mam!! :)


So now we are waiting. Mady apparently also slept until 9am this morning.. Mady and Belle both slept in for the first day, and of course AK and I didn't sleep a wink. Of course it works that way, right?! I hope Mady is having a great day playing with her friends. I know she is. Annabelle has been completely full of herself and playing all morning. She suddenly just slowed down like she hit a brick wall, but I don't know she isn't just getting tired. Only time will tell if it's a sign that her temperature is about to begin moving, we will see. I am drinking my second cup of coffee and attempting to eat for the first time in two days. Who knew it was possible for me to not have an appetite?! Maybe I'm sick too! lol! Gosh I pray we get answers soon.. I really need someone to cut this stress and give us some sort of break and ability to relax. I cannot sleep or rest or relax until we do. It just won't happen. No matter where we are or who offers to help us out. I won't rest until my baby is taken care of and I know she is ok. I won't stop fighting until we have answers. 



Monday, June 24, 2013

Monday's Downhill Slide

This weekend's happy times, were short lived. I had a feeling we were heading downhill Sunday when Annabelle's mood began changing again and she started to become monotone and quiet. Sunday night she started the coughing fits. She moaned and cried to herself for most the night Sunday night.. 1/2 of me was concerned that we were heading back to where we were last week, the other half of me thought, "I bet that brat ate some of that Vicks when she was playing in it.. no wonder she feels yucky!". Regardless, it wasn't a peaceful night for Annabelle.

She woke up in the morning bawling crying right away. That's never a comforting sound when you wake up every day praying, "Please, Please Lord let this be a good day for my little girl". We brought her downstairs and she didn't want to be put down, she didn't want to eat, she didn't want to watch Mickey Mouse, or play.. she was just upset, tired and not feeling well. She didn't have a fever, fortunately, but I was skeptical. I went to work knowing the day would be filled with anxiety. I drove on the way to the office and had butterflies in my stomach the entire time, "Should I be coming into work? Should I be at home?"

Around 11:30a I received a text - Annabelle was still not doing well. She wouldn't calm down since the morning and nothing was making her happy. I told her to continue taking her temperature and call me the moment it begins dropping or spiking. Within the hour her temperature dropped from upper 97 to 95, with fear that it would continue to fall, or it would begin to spike, I flew out the door and headed home.

12:30p
On the way to my house I called our pediatrician on her cell, "Annabelle's temperature is dropping, she has been crying all morning and hasn't eaten since yesterday afternoon. What do I do? I really don't want to go to the hospital yet. Can we talk thru this?" Together we came up with a game plan; Come to the pediatrician's office, we will begin bloodwork and get started on a bunch of labs. While we are there, if her temperature continues to drop lower or spike, we will have Annabelle transported to the ER from the office. This way she is always in the best hands no matter what happens.

When we arrived to the pediatricians office, her temperature was 94.1 - we immediately began on starting bloodwork. The moment you set Annabelle in that chair in my arms, she knows what is happening. Once you put the snug band around her arm, she starts screaming. I warned the nurses that she is SO strong, I will need help holding her still, and also, her veins are difficult, they roll and are never easy to get - so take your time finding your best stick. We looked around for several minutes, and although Annabelle wasn't being stuck yet, the anticipation was only building in her poor mind because she KNEW what was happening, and she just began to get more and more upset. It was heartbreaking. Finally we decided to go for a good vein in her hand. She made it the first time but then lost it.. she dug for only a good minute or so before we decided to stop. Her hand immediately swelled pretty large and I tried to take the opportunity between arms, to console my sweet little girl. There was no amount of consoling her, she wanted out of that chair, out of that room and to GO! Once we moved over to the next arm, my poor little baby started begging, screaming for "Lambie", it broke my heart as she scooped him up under her arm and laid her head on his and just cried. We looked for a couple minutes and then braced for the second stick on her right arm. Since this one was in the crease of her elbow, Annabelle tends to move her shoulder around a lot that moves her vein and starts rolling them.. which always results in losing the vein = more digging. We kept the needle in this time but it took several minutes of repositioning each time she would wiggle.. which was constant. She dropped Lambie and turned her little body and faced me with her arm behind her getting worked on. She wrapped her left arm around my neck and started screaming, "Mamama! Mamama!" with tears flooding her face.. gosh she knew just what to do to kill me inside! What can I say though, "Im so sorry baby, I love you, I love you, it's almost over, I promise........ Baby Annabelle, of mine. Everything about you is perfectly fine. I love what you are and I love what you do. Sweet Baby Belle, I love you." Soon after, we were finished, we settled on the amount of blood we were able to get.

Our doctor came in while we were cleaning up (side note. Don't ever wear new White House Black Market, white dress pants on the days your wiggly daughter is having bloodwork.) Dr. Young and I discussed Annabelle and what was happening, I communicated my fears with the fevers and she repeated several times, "Ashley, you have to take her in as soon as you know it's time. I understand and support you not wanting to go to the hospital, but when it's time, I will know you are making the best decision, and it's necessary. Call me the minute you decide and I will have everything ready for you when you arrive." We took her temperature again, and who knew having bloodwork done for 30min would raise your temperature to 96.5! Apparently all I need to do to bring her temp up, is piss her off enough. I kid, I kid! I decided I wanted to take her home to rest and we would stay in touch.

On my way home, I needed to stop in my office to collect my things. I have so many projects going on at work that I HAVE to wrap up.. life's curve balls are really hindering me from doing my job well and that itself is stressing and depressing me. I carried Annabelle inside, and while collecting my things, I was able to introduce her to a few of the people that are praying for her daily. It was nice to be able to give them a face to the stories I share about my girls in the office. Annabelle was limp, she was emotionless and non-verbal. She couldn't lift her head if she tried.. she seemed defeated and exhausted. I made the lap thru my office as fast as possible and ran back to my car with my laptop and notes to work from home.

On the 8m drive home, Annabelle leaned her head to the side of her carseat and whimpered the entire way.. not crying, just whimpering to herself. When I brought her inside, she wasn't interested in sissy, she didn't care to see anyone else. I made her a cup and walked upstairs with her.. very quietly and laid her on the changing table and just stared at her. She looked like a pale, but full red cheeks little girl that was begging for help in her eyes. I just watched her. "Annabelle, I am so sorry about today baby. Mommy is here and I am trying. I promise sweetheart.. I am doing everything I can to help you. Keep fighting and mommy will find the answers, I promise. I love you, I love you, I love you." She had a little tear fall out of both sides of her eyes and she just watched me. It took everything I have to not cry my eyes out with her. I changed her diaper, though it was completely dry. I offered her a cup and she pushed it away.. she still hadn't eaten all day again. Finally I laid her in bed and she didn't move. She just laid there.

I think seeing my child limp and emotionless is 100x worse than seeing her fiesty and screaming. At least then I can see and feel her energy and know she is fighting.. at this point I feel like she is surrendering, and she can't do that. She was so tired, and in her defense, she did exhaust herself fighting a needle at the doctors office for 30min, heck, I was tired from holding her down that long! She laid down yesterday afternoon but I don't think she ever really slept, at this point, relaxing is just as good as sleeping I guess. We'll take what we can get.

Dr. Young texted me Annabelle growth charts.

Here is her weight: You can see the roller coaster we have been on with gaining and losing weight. The spike was during the time of liquid prednisone and now.. hopefully we maintain the curve where she should be. She is still on so many medications and steriods that I know are keeping her weight on, but at least it's a healthy maintained curve. I am ok with it..



Here is her height: A child should maintain their curve.. even if that is on the higher end, or the lower end, it doesn't really matter. But a sudden drop on their curve is not normal. She hasn't picked it back up yet either. This is our pediatrician and Endocrinologists main concerns. The heights fluctuation also reflects around the times we were changing her nutrition and between diagnosis, it has raised flags in more than one area on our current treatment, medication etc. Something is just not right..



Tonight will be touch and go. If anything at all changes, if she doesn't begin to perk up, start taking fluids, temperature becomes unbalanced, we are headed to MCV. I still haven't heard from Endocrinology and wish they would return my call. I don't like waiting.. I don't like looking at my child and telling her to wait. I don't have a lot of patience lately... I want answers and help, now... yesterday.. last month.. last year!

Sunday, June 23, 2013

This weekend was full of promising smiles and giggles, and then hit with the reality of a little girl that just isn't doing well.

I don't know how kids do it. They are the most resilient, strong, optimistic, full of life and energy little people ever. I always say, “If I were in Annabelle’s shoes, you would just have to leave me in the hospital and throw in the towel. Im not as strong as she is”. She wears a smile, even when it’s clear she feels like crap. She tries to color and play with toys when her temperature is thru the roof and almost no matter what, you can always get a tummy tickle – belly laugh out of her. All these smiles, sometime come with false hope though. When she looks well, I want to assume that she is feeling well. When she is up walking around, and acting like a normal 21 month old, I give her the credit that everything is great. But the times when she doesn’t want to play or find something to do, and she wants to only be held and whimper, then I know she really REALLY isn’t well. AK and I know our daughter very well.. when someone else comments ‘oh, she looks like she is doing great!’ and Annabelle is hardly walking around and just staying monotone, we know that she isn’t feeling great. It’s hard to smile to the public, and to family and friends and stay optimistic when your daughter is in front of you and suffering inside and you can’t help her.. and you don’t want to burden anyone else with your worries or observations. More often than not I tell people, “She’s doing great” and smile. It’s easier that way, for everyone.

Saturday Annabelle had a great day. She was eating, playing, peeing and had her first BM is a very long time. She was annoying the heck out of her sister and what appeared to be back to her normal self. I cannot begin to tell you the happiness I feel, sitting back and watching my girls interact and playing together. Mady adores her little sister and worries about her constantly, I hate that she burdens herself with that worry – but it’s her sister. I make sure it’s healthy for her and she never worries about anything serious and she understands that everything is going to be ok.. "we just have to be very careful about food, very easy when she isn’t feeling well and listen very well when mommy and daddy need to help Annabelle. Other than that, she is your sister. You need to share, take turns, play nice or you’ll both be in time out!"

For a little girl that hasn’t eaten since March, she’s still very interested in food in every shape except eating it. She won’t eat, or try to 95% of the time. But she DOES want to be a big girl like her sister and mommy and daddy, and use a spoon, fork, knife. We pull out the play-doh and let her explore with utensils. If we are eating, she always wants to investigate what we are chowing down on. She peeks into our bowl or over our plate. Sometimes she opens her mouth wide and asks for a bite, but most the time she just reaches for our utensil and tries to ‘help’ feed us. At this point she should be quite skilled at using a fork or spoon to feed herself, but when you aren’t eating, it’s hard to learn those new skills! As much as I cringe at the mess she makes, I still let her feed me whatever is on my plate. She loves to do it and it’s too cute. A little heartbreaking when you think too hard about it, but what I try to remember is that she is enjoying herself being interactive and she is improving her fine motor skills at the same time. Here’s a short little video of Saturday morning J


Annabelle slept well Saturday night. She woke up coughing several times but without pain it seemed. Sunday was a slower day than Saturday. She never seemed to really wake up Sunday. She was pretty quiet, to herself and monotone for most the day. She was emotional and seemed to have tantrums over everything. We went with it though.. it’s hard to discipline a little girl that you know likely isn’t feeling well and is just exhausted. If she wants to get back into the pool for the 8486465 time of the day, darnit we’re going in! The sunshine and couple hours of pool time are just what we needed.. to wear us out. When we got home, it was a bit downhill. I wasn’t feel well again…. These darn headaches that won’t go away. Mady and Annabelle were worn out, but it wasn’t quite bedtime. We made Annabelle a small bowl of Nutra and sent her to bed early. She was silent and seemed to have gone right to sleep, the poor little girl really needed it I know. AK, Mady and I had dinner together and then attempted to clean the house.

In all the chaos that is going on, I have to say, one of the hardest parts is keeping my house and the simple things pulled together. It’s harder than I could have ever imagined. It’s not that my house is filthy, it just isn’t as prestine as I want it to be.. and it isn’t that I don’t want it there, I just don’t have the energy to do it anymore! I don’t have the motivation, focus, or drive to make it a priority like I used to. I tell myself, “Ashley you need to let some things go so you can continue to focus on only what’s important”.
·         Spending time with my family.
·         Balancing my time and love between two beautiful little girls.
·         Staying on top of medical bills.
·         Battling prescriptions between insurance companies, several times a week.
·         Making appearances to social events that keep our sanity and keep our family socialized with awesome people that love us.
·         Responding to texts, phone calls, emails
·         Paying bills and managing medical bills
·         Maintaining constant updates between Belle’s therapy’s.
·         Scheduling doctor appointments almost daily.
·         Administering medications around the clock
·         Watching Annabelle like a hawk looking for changes. Taking her temperature, etc.
·         And most recently, constant communication with the pediatrician and Endocrinology Team

I know I stay busy, I know I am tired and being stretched but I never feel as though I have it ALL together anymore. I think toys on the floor make me feel that way. If there are dishes in the sink or carpet without vacuum lines, I feel like the house is a mess and that in itself is overwhelming. I can probably live with it that way, but I cannot relax. Annabelle cannot, I repeat CANNOT get into food or accidentally put something into her mouth. If Mady eats a Nutri-Grain bar and walks into the living room and drops a tiny piece, I promise Annabelle will find it. She cannot eat something like that! Living in that fear makes me need to clean the floors constantly. Having dishes or laundry piled up will just stay on my mind until it’s finished. If I know the house is cleaned and everything is taken care of, only then can I sit down on the couch and truly ‘relax’. I sit back often, but I am so full of anxiety and worry that I need to be doing things, that I just don’t think Im actually relaxing. Does that even make sense?! lol Oiy

Back to Sweet Baby Belle. So Sunday evening, we all began cleaning.. Mady was in charge of toys and dusting and AK and I battled most everything else. Finally when it was bedtime for Mady, I walked her upstairs and got her into jammies. Annabelle was asleep in her bed and looked so peaceful. I kept looking over at her and she seemed ‘glossy’, I was worried she was having cold sweats again. I was so nervous to touch her though, I didn't want to wake her up! Once Mady was tucked into her bed, I leaned down to kiss Annabelle on her head and she WAS greasy! I gasped, “gross!” then I realized there was an empty bottle of Vicks Vapor Rub in the bed next to her. That little brat. This is her second escapade on smearing yucky stuff in her room. The first adventure was between Desitin vs. Carpet. The poor kid was passed out so heavily, but I had to clean her up and made AK get in the shower with her while I attempted to smear everything into the wood and remove all goopy sheets, blankets, books, Lambie’s, etc. It was fun.. messy, frustrating, but nothing we cannot laugh at. I thought AKs face would turn purple, and then I said “Wait! Don’t touch her! I need to get the camera!” He looked at me shocked, “WHAT?! ARE YOU KIDING ME!?” – Yes J By the end of it, we were all laughing and both girls were running around in jammies climbing on and off their beds before we snuggled them in for good night kisses.
 




















This is my life. Up – Down – high – low – hilarious and scary all at the same time. What a ride we are on and how lucky we are to be able to take the front row seat.. I just hope God knows what he is doing as he drives this roller coaster.