We're on a Black List.

This weekend has been the hardest we’ve had so far. I am watching Annabelle spiral away from me faster than ever. She is sleeping too much for my comfort. When she is awake she is irritable and emotional. She isn’t herself; she is not my Annabelle Grace.

My heart is shattered from Johns Hopkins Wednesday. The doctors I spoke with, the genetic counselors, the concern in their voice and the plea for us not to move Annabelle from their hospital all led me to trust their desire to help my daughter. I knew the drive to Baltimore, MD would be promising, I knew deep down we were literally on the cusp to answers. I was so happy for the very first time in so long. I was anxious for the news. I was prepared to hear the good AND the bad.

Annabelle and I had a long talk on the way to the hospital and we were both ready. This was the turning page in our journey – we didn’t know it was the last page for hope in the medical world. We didn’t know that day would close the book on us. 

My grandmother went with me to Johns Hopkins. The drive is really difficult with Annabelle sometimes. When her and I get in the car and she see’s me packing all our usual things for hospital visits, she immediately gets upset. That turns into a full car ride of anxiety for the both of us. And a trip out of state alone with her isn’t fair to either of our sanity. The extra set of hands and support is so helpful. When doctors are speaking, or I am checking in with registration, it’s nice to not have to handle Annabelle and allow someone else to play with her while I deal with the important things.

I keep considering whether or not to go into detail about what happened in that room at Johns Hopkins, but the more I reflect that day – the more heartbroken I sink, bitter I get and depressed I fall. We were supposed to be there to begin more testing, narrow down which type of genetic disease is going on, discuss possible treatment plans, talk about the future, iron out genetics. 

What happened instead was a team of three people entered our room, two of them did not make eye contact with me, only one doctor spoke. She asked me point blank, “Mom, what do you think is wrong with Annabelle right now. Look at her, what is the problem you are seeing in this room?” At the time, Annabelle was fine, she was antsy and misbehaving because she was in a room of doctors, she was yelling “Bye Bye!! Mommy! Bye Bye!!” because she knows what is next. She was full of energy because she was running on full adrenaline to get the hell out of there! I responded, “Well.. on the surface nothing appears wrong with her. That’s the hardest part of this. But all day she has slept. She tires too easily. Her pain is so erratic.” She asked me where all this was documented; my curiosity and guard started to rise with the conversation.. I told myself in the back of my mind, ‘this can’t be true.. she isn’t going to treat me the same way as MCV is she? There is no way…’ Our conversation quickly began to turn downhill… I asked told her, “I am sorry. Are we discussing the same Annabelle Bishop? Because this is not the conversation I was prepared to have with you today. I am not exactly following what is going on here. Can we discuss her bloodwork again? It is all very abnormal, that was a great concern just yesterday, should we talk about that please?” I wanted to reel the doctor back to the facts, the concrete reasons why we were in the office, all the black and white information we have in front of us. She responded, “Yes, Annabelle’s bloodwork is abnormal. But that was likely because it was a bad draw when you were in the emergency room. The bloodwork was abnormal but at this time I do not see any reason as to why we should repeat it.” I was shocked. I asked her, “Ok, documented problem #587466, Vaginal Bleeding in the emergency room. What is a plausible explanation for that?” This was the moment in which every fear, concern, and question I had came to light, the doctor lashed at me with great irritation, “THAT Mrs. Bishop! Was explained to you in the emergency room at MCV. It was a ONE time occurrence and hasn’t repeated itself. There was NO proof there were concerns about a problem from the bleeding.” My jaw dropped. I knew at that time MCV had contacted Johns Hopkins. I knew the visit was over. I picked up the business card that I was handed 5 minutes prior from this doctor and read the name, her name was NOT the doctor I was scheduled to see today. I read the names of the two Genetic Counselors in the room with me, neither of them were people I had spoken to over the phone or were scheduled to see. The visit was over. We were done. I dropped my head and didn’t speak another word. The doctor wrapped up the rest of the conversation, “Mrs. Bishop, I think you have done enough. You’ve done everything you can with this child and ruled out anything serious from the series of tests you have put her thru. You need to stop Mrs. Bishop, do you understand me? Annabelle needs a break, you need a break. You need to go home and just give your family some time. You need to stop putting her thru this.” I looked up with a furious face and tears in my eyes and a shaking voice, “My baby is sick. You don’t get it.” The doctor looked at me and turned around and signed a piece of paper and asked me to also sign, “I want you to understand that I have ZERO concerns for any type of Genetic Condition. Zero. There is no reason to schedule, follow up or pursue any further here at Johns Hopkins unless there is a specific, Physician referred issue that you would like our second opinion on. We have no reason to need to see Annabelle as a parent referred case any further, do you understand that?” I signed the papers and asked for a copy. She told me they would mail myself and our pediatrician and also our GI a copy of the days conversation that they see no concerns with Annabelle. My grandmother wore a horrified look on her face. She tried to initiate more questions and I stopped her mid-sentence, there was no use. I packed our things, didn’t make eye contact and did not thank anyone for their concern, time or help. I couldn’t speak words, I just needed to cradle my baby and get the hell out of the hospital. I wanted to run as fast as I could.. I wanted to break down and cry.. I wanted to scream.. yell.. hit a wall and PLEAD for someone to stop doing this to my family. I carried my baby girl and walked as fast as I could to the car. 

Traffic was hell. I mean hell. The day was non-stop drizzle rain, which means no one can drive and everyone causes accidents. The moment the traffic stopped, I saw a sign for the HOV, without thinking, I ripped the car onto the HOV ramp and bypassed the traffic. I wanted to call AK, I wanted to post an update, I wanted to text friends but I couldn’t.. I was in complete shock. Annabelle kept crying in the backseat and I kept yelling at her to stop. I had to merge off the HOV eventually and get onto i95. I fought my way from the far right lane to the far left and immediately found the next HOV lane, I had no idea where it would take me, but it was moving and 95 wasn’t so I took it. It was 4:00pm and I was fighting DC traffic in the rain. That combination, I am certain is what hell is made of. I knew I needed to stop the car, we needed to break from the traffic, Annabelle needed to be changed, we needed to eat and I needed to breathe. I asked siri to direct me to Potomac Mills and SOMEHOW, God paved a road with zero traffic straight from the HOV lane, to the parking lot of Potomac Mills. I didn’t even know it was possible but it was a damn miracle. My grandmother didn’t know what to say. I knew she wanted to break down and cry. I knew she wanted to have a conversation but together we were angry, speechless and heartbroken. She reminded me she was ‘there’ and she loved me by tapping my right leg from the passenger seat, I held her hand and looked at her and smiled.. we both looked back out the window. It was a silent drive flying around traffic. But the words just weren’t there. We had plenty questions but were both too heartbroken to discuss it. I parked at Potomac Mills and asked Annabelle if she wanted to go inside the Disney Store and pick out something fun for her and sissy. We walked laps around the mall for a short while. I called AK and tried to bring him up to speed, which consisted mostly of, “were on a black list – our child isn’t getting help anywhere and I don’t know what to do. we need to think creatively or start picking out a casket AK. Pray like hell for our family, I am so scared.” Around that time it hit me that I was going to be sick.

Annabelle was playing in the disease-infested kids play area of the mall.. I didn’t care, she was smiling and I didn’t have enough energy to convince her not to play and have fun, but sit in a boring stroller for two hours before sitting in a boring carseat for another 4. I looked around searching for my grandmother that went shopping in a nearby store. I needed her to come watch Annabelle so I could go sit.. or get something to eat, I hadn’t eaten all day again and it was dinner time. I finally saw her and stayed on the phone with AK as I made my way to a smoothie stand. I remember ordering a smoothie and cutting off the poor clerk, “Huh? Banana? I don’t care. Im sorry.. anything you have – your special, I just need something please.” I couldn’t see straight and was nauseated beyond belief. Spots were swirling around everywhere and I just knew I was going to embarrassingly pass out in the middle of this darn mall and scare the bejezus out of my grandmother. Fortunately that dramatic scene didn’t happen and after sitting for a while and drinking the smoothie, I started to feel better and my nasty mood started to wear off. We gathered Annabelle and made our way around the mall a little more before deciding to get dinner and hit the road.

Annabelle and I arrived home late that evening, shortly after midnight I believe. She was exhausted and went to bed immediately. The day was devastating. AK knew the moment I walked in the door that I couldn’t talk and just needed to go to sleep. The day was so long, driving wore me out in the pouring rain, Annabelle needed to be changed thru 4 complete outfits and arrived home naked in only a diaper because she either vomited or her tube drained all her tummy contents on her clothes every other time. My entire car smelled of stomach bile and vomit. I had two full bags of soiled clothes from the day. When I walked thru the door, I asked AK to clean out the car from everything as I put our little girl to bed. I gave her the biggest kisses. I thanked her for being such a blessing in our lives and for never giving up. I am only the mom in this situation, I can only stand over her and fight for her, but Annabelle is living the true hell. I am so grateful she doesn’t know what has happened in the world around her. I am so grateful that her innocence allows her to blow doctors kisses and wave bye-bye when we leave. My perception of the medical world is ruined forever, hers is beautifully innocent.

That was Johns Hopkins, fast forward to the last couple days. Annabelle is sleeping more than ever. She is refusing to take feeds orally which requires us to send them as a bolus. Because she continues to vomit, she isn’t able to balance her feeds very well. I have been keeping her on a slower feed rate, more continuous feed and longer stretch of boluses. She is sleeping constantly which makes this process easier in a lot of ways. AK and I have spent the weekend locked inside our home, it’s raining outside and I have no desire to change out of my sweatpants. I don’t want to shower more than necessary and I only brush my teeth for my own personal comfort so I can stand to be around myself. We’ve been cleaning a lot, reorganizing things which always makes me happy and cooking. Our girls are running around either naked or in jammies and have enjoyed the much needed relax family time.

We have a case of the Monday's

Annabelle seemed to have a pretty good weekend, all things considered. She did rest a lot but without excessive sleep.. which left her awake for much of the time but too tired to do anything. We enjoyed outside as much as we could because the weather was too welcoming to not to. Annabelle has been having trouble with her temperature suddenly again as well.. this hasn't been a problem for months and it's returned.

Yesterday afternoon at a family cookout, Annabelle was running and playing with all the other kids until I saw her begin to stumble from across the yard - I knew she needed to eat something so I encouraged her to come sit down.. she did but with her head on my chest, completely exhausted. She started shaking, but not as if she were having a seizure - she just felt like she was shivering. It was 85 degrees outside! I didn't think much about it and sat her in the chair next to me while AK made her a dinner plate. I continued conversations with family and friends and then looked down to my sweet Annabelle to the right of me, slowly eating and just staring off.. I kept asking if she was ok and put my hand over her arm - that's when I noticed how cold she was. I was shocked and quite surprised.. this hasn't happened in so long, I was almost nervous for a short moment! I asked AK to feel her and he felt her arms, legs and forehead and looked at me with such a serious face "She's cold Ashley, why? What should we do?" I told him, "I don't know.. do you think it's because she got too hot? Let's just watch her.. I don't want all these people to freak out if something happens. If she seems bad, I'll take her inside or we can leave.." Annabelle sat down for quite a while with me. It took at least 20min before she began to feel warm again. Her limbs were like ice, I have no clue what her temperature dropped to. She was shivering sitting there eating as all the rest of us were sweating and chugging iced tea. I just shook my head, put the usual smile across my face and made the most out of the rest of our evening. Annabelle shaped up very well afterwards..she resumed playing, just a little slower this time - taking breaks often to just sit on a toy, or stand back and watch vs. running. I could tell she was slowing down and she needed to get home. But she was playing, she was laughing, she was yelling, learning, she was living.. how can I pull her away from that?!

This morning Annabelle had to be woken to go to the sitter's house. She fussed a LOT on the way in the car and kept whining, "Mommy.. mommy.. hold". The best I could offer was my hand, twisted backwards like a double-jointed freak with my shoulder prying out of it's socket. I held her hand from the front seat until we arrived at the sitter's house. She seemed so sleepy, when I carried her inside (with her pillow that she insisted on bringing along), she immediately laid down - didn't acknowledge I was leaving and just curled up to fall back asleep. Today was the first day our sitter struggled to make Annabelle eat only 4oz every 3hrs. Each time Annabelle would hand her cup back and say 'done', the cup was still half full (half empty .. you say tomato - I say to-mato). Because she struggled just to drink a few ounces today, she didn't eat any food.. but Annabelle didn't seem phased by it. We got home and she still wasn't interested in eating.

I interviewed a nurse this evening. She was wonderful. Unfortunately the best time for her to visit us in our home was at 5:30pm - which is the crunch time for our family. It's within the hour that were all getting home, and the kids are Starving.To.Death! I immediately started making pasta sauce as soon as I got home and had that simmering for AK to finish preparing the rest of the meal to make baked ziti with Madelynne while I talked with the nurse. We discussed what things I was looking for with Annabelle. She shared her story about her daughter who just underwent brain surgery, and also has experienced complete hell with MCV. I felt like she could finish my sentences as I shared our summarized journey with Annabelle. We took a lap around the house and pointed out the way everything runs and our routines and systems. I think she will be a good fit. We will have to work on a good compromise for her hours and what times work best for our family, but overall - I hope something works soon. I will call the agency tomorrow with my decision after AK and I talk tonight.

We definitely need the help, Annabelle needs to be back home and within a nurses care, not that I'm not in love with our sitter - I am just terrified of the upcoming fall season and even more scared of whatever is next on her journey. I am always scared about what's next. I hate that fear that I carry - I wish I could have all the hope for the future, but that would be a lie if I said I do.. I pray for the future, but my prayers are generated from all the fears I have when I look ahead. I have a bad intuition about going into this cold/flu season. I hope it's just my irrational mommy fears kicking into high gear. Gosh I wish Annabelle could have OJ! I would boost her immune system really quick! haha

We've removed Potatoes completely from her diet to see if that helps resolve the horrible rash on her bottom. I have been battling this terribly painful looking rash that bleeds constantly without much luck. Sometimes I can get it to clear up a decent amount, but within a day it comes back. Because she failed Sweet Potatoes so quickly, our pediatrician and I decided to cut out white potatoes for a few weeks and see if that's the cause to this never-ending rash. If not, we will give her white potatoes back because I do not think she's flaring from an EoE standpoint - I think what I am seeing is purely an allergy thing.

That being said, all she is left with right now are apples that are safe. And green beans that are new, but she does not like them. I can't tell if it's a texture issue or what keeps her from eating green beans, but we cannot get her to eat them to save us. Her diet mostly consist of apples, applesauce, apple slices and baked plain apples to soften. Oh, and 36oz x day of Elecare Jr. That's it.

The rest of the day consisted of arguing with our Medical Supplier to get the correct supplies we are supposed to be receiving. They have been sending us the wrong syringes to use with Annabelle's tube, despite my correcting her over a month ago on the order (If anyone needs Luer-Lok Tip 5ml syringes, let me know and I'll drop them in the mail for you!). I also need Duo-Derm despite my insurance denying the coverage for it. Annabelle (like me and Mady), is allergic to tape, and the paper tape is much worse. Her poor face breaks out so bad. I also can only get her tube placed on one side so that has been the side to wear the tape for weeks (we change it often.. but it's always something on there), this weekend I had to truly give the right side of her face a break and pull the tube to the left side of her face, but still in her right nostril and tape it accordingly. Poor kiddo. I hate this damn tube so much - but it's also a blessing in disguise. A TRUE Love-Hate.

I attempted to request Mileage Reimbursement for our trips back and forth to Johns Hopkins, CHKD etc. To my surprise (sarcasm), they denied the reimbursement because Hopkins is out of the state. Shocker. Oh well, it was a nice shot at least.

Tomorrow we have an evaluation with the pediatrician before being seen by the genetic team Wednesday at Hopkins. I should hear from Genetics tomorrow sometime for all the final instruction before we come up. Our appointment is at 2p and we need to be in clinic no later than 1:30p. At least that means we can leave AT or slightly after rush hour to get there.. fingers crossed for a smooth trip.

Tonight AK and I are exhausted. I think it's the rainy Monday that we've all had. What a perfect day it would have been to stay home in sweat pants with the family and cuddle under blankets with a movie? Yea, that's the way I would have preferred to spend this rainy day! Instead our home is a lot more chaotic - the house needs to be picked up now that the girls are in bed and AK is installing a new garbage disposal because... well, life gives us lemons, constantly. And there is nothing more disgusting than a broken garbage disposal. I gave him about 2hrs before I demanded it needed to be replaced ASAP. Tis' our life! :) One day we will sit on a porch swing, a glass of wine in my hand and my head on his shoulder and we will laugh and shake our heads, "How did we ever make it thru that... ?" Until then, *yawn*!

Here's what our sleepy beauty looks like tonight <3 

Sweet Dreams World.

More Good News!

The Johns Hopkins good news was not the ending of the good news in our house.. it's continued. Your prayers are finally being heard and blessing are filling our home around sweet Annabelle .. keep lifting her in prayer and sending the well wishes our way! We need this motivation and energy for the next step on this journey!

We have had Speech Therapy - Occupational Therapy and Feeding Therapy.. assessments galore.. doctors appointments.. phone calls.. etc. It's all for a good cause and making positive headway!

Our appointment with Dr. Young was intended for us to touch base on Annabelle's progress and also address some questions I had with her skin. Once Dr. Young looked her over she smiled and said, "Ashley, you're not going to believe this! This just may be the FIRST 'common' thing Annabelle has ever given us!" I smiled and asked, "Ok, what the heck is it?" It's called Tinea Versicolor. It also explains the thick patches that have covered the back of her neck and top of her back. The spots are all over her legs, arms, shoulder and chest. Fortunately, they don't bother her and I didn't have any concerns.. we were just curious. So WAHOO! for Annabelle - I am almost inclined to write this down in her Baby Book as a "1st" for something ;)

Next, Dr. Young wanted to discuss the tube feeding progress.. I began talking while she scrolled thru her laptop. She smiled and looked down.. I didn't know what to think of her reaction. I didn't know if it was a subtle satisfaction with Annabelle's 'growth' at least, what I hoped would be 'growth'.. then she looked up with glistening eyes and said, "Ashley, Annabelle has gained... FOUR POUNDS in the last month.... wait, she's GROWN AN INCH AND A HALF!" Mind you, Annabelle stopped growing in her height almost 9mon ago and hasn't made any progress since.. she hasn't gained any weight since April when we removed all food from her diet. And since we have placed the NG Tube, she has grown tremendously! I cannot believe it. I fought back tears with every ounce of strength I had because I knew the moment the first tear would fall, we would both be sobbing like babies. I told her, "Dr. Young, I don't want to admit it - but I know it's working. I hate this tube so much, I hate everything about it - but it is saving my little girl and for that I am grateful and I have no doubts this is what she needs. I feel like I JUST met my daughter! Her personality is priceless, the affection she gives, the way she lights a room with her tiny spirit, the simple things that absolutely fill her day with happiness - this little girl is absolutely incredible, and I am learning and getting to know more and more about her everyday!" It was quite a happy time in the doctors office during this visit. Dr. Young and I both shared many motivational thoughts about this journey we are on together with Annabelle, what she's teaching us and how promising her future looks. We are blessed to have her part of our 'family' (Dr. Young), I wouldn't be able to fight this battle without her, that's for sure.

Annabelle had a really hard day Tuesday. She was EXTREMELY emotional, any and everything I tried to offer to help soothe her turned into a crying breakdown. The most hateful thing I did was buckle her into her carseat and that led her into a shivering cry with POURING tears for nearly 20min. She wanted to be held. She wanted me to carry and walk her all over the house.. around outside.. anywhere as long as I wasn't comfortable, doing what I needed or happy. She just wanted to be close. Im confident she was in pain, when she acts this way, she wants to be held close and she will not sleep. That was the hardest part of the day, I knew she was exhausted as she normally sleeps most the entire day but Tuesday she couldn't sleep, instead she just cried with her little head on my shoulder as I walked.. and walked.. and walked.. and walked..!! She slept well that evening though and I was able to catch a few welcomed smiles.

Her tube also came out and this time I didn't put it back in, I let it stay off for the rest of the day and prayed and begged that she would take her feedings every three hours orally and wouldn't make me put the tube back in until bedtime. Each time I have replaced the tube, I have struggled to get it in her left nostril - it will not glide in, the right side however will easily move directly into place. I don't mind it being on the right side, but I don't like having to tape that side of her face constantly and not being able to give it a break! Her poor skin is just raw I know and I wish I could give it some relief and I can't. She is getting much better about her Tubie though. She is allowing me to put a new piece of tape over her tube to keep it positioned without fighting me. (HUGE MILESTONE!) And when I am replacing her tube, she still fights but not nearly as bad and the recovery time is becoming a much faster process - as soon as it's over, I let her run away to play and she seems much better. She is also allowing me to hook each of her feeds up without fearing I am going to hurt her and if you ask "Belle, where is your tubie?" She squishes her little nose and points to her face :) Mady loves to protect her sister from everyone, including protecting her sisters feelings. On the playground the other day, Mady approached a little girl that was staring and said, "That's my sister and that's her tubie. It helps the formula get into her belly so she can grow to be strong. You don't have to stare at her, ok?" The little girl piped up and said, "Ok! Want to go swing?" Mady said, "Yes! I'll race you!" and they were off. It was quite a proud moment.. for me.. for Mady and deep down, I felt proud for Annabelle too although she had no idea the conversation that took place. This tube life is becoming part of our life. As much as I can't avoid it. I can't look at Annabelle and NOT see the tube yet. People don't pass us in stores or public without looking at Annabelle and then giving me a sympathetic warming smile of encouragement as they pass - people don't see my baby girl as Annabelle and me as her mother. They see Annabelle as a fighter and a sick toddler and see me as the exhausted mommy pushing the stroller and offer eyes of strength & warm hugs in passing. Adults are more curious than children it seems. They pitty Annabelle and our family - kids just want to know what the heck it is and then they move on. These experiences we are living may never go away as long as Annabelle has a tube taped across her face. I hope my skin grows thicker and I can stop taking those judgement I see in a strangers eye, directly to my heart. It will be ok one day - for right now, it's still quite an artificial adjustment that I am struggling to look past.

Speech Therapy is going well. Annabelle is finally putting two words together for the first time. She only has about 2-3 phrases (maybe?) but she is getting there. Her main 2-word phrase is 'have-some'.. that's her way of asking for anything we have that she wants (lately it's been food :( but at least there are words and no longer fits of frustration!). The speech therapist and I reviewed our short and long term goals for her, made a couple changes and agreed to touch base after Hopkins. Our 'Early Childhood Intervention' facilitator came to our house today to spend some time with Annabelle, she wanted to see us before our trip to Johns Hopkins next week and wish us well. They are a wonderful group of women, Annabelle has made lots of improvements since working with them and they are always very patient with us when Annabelle retracts back several steps (something she always does when she is undergoing a lot of tests.. she always takes a few steps backwards and I don't blame her).

I called to have an assessment performed for Annabelle to determine if she needs or qualifies for any additional therapy for feeding. The speech therapist asked that I take this step with Annabelle because she wasn't seeing as much improvement as she would like and knew Belle is capable of much more but needs the resources of an occupational therapist to support it. Meanwhile, since we've started to introduce foods back in, Annabelle is truly struggling to eat - ANYthing practically. There are a very few foods she can eat and actually swallow, and that varies by day. Today she could not eat apples, green beans, potatoes or chips without spitting them all right back out. She will take a bite, possibly chew a few bites, scrape everything off her toungue and then repeat the process. She will not swallow the foods and rarely even attempts to chew them. I have no clue what to do anymore to teach her this process! The same muscle you use to speak, is the same muscle you use to eat/chew - therefore if our expectations are for her to continue to improve in speech, they are also parallel to continue to show improvement in her eating habits. Both areas are failing so we all felt it best to reach out for support in every area to bring everything up to speed where it should be. The OT attempted to cut the apple into small pieces to feed Annabelle rather than her taking a bite on her own - just as I warned, Annabelle choked pretty badly, proving my point that she isn't chewing or swallowing properly when she actually does. We need some guidance at least so I can learn how to help her!



I also called Pediatric Connections today to demand an explanation for the time it's taking to find us a nurse for in-home care. I am using abusing every resource that I can find as childcare for Annabelle until they hire someone for us. Fortunately, I must have had a 6th sense because they found a great candidate. She is a nurse that has a previous history doing pediatric home health care. I am looking forward to meeting her. I will schedule a Meet & Greet in our home this week and if everything works out, hopefully we can start building a routine with our new nurse in the next couple weeks!

Please continue to keep our family in your prayers. I cannot thank you enough for the continued love, support, encouragement, guidance, advice and selfless offering to help our family in any way you can. All we could ask from someone are prayers. That's all we want. We have our family. We have lights on in our house. Madelynne said grace at the dinner table tonight and Annabelle was proud to finish the grace mid-sentence 'AMEN!'. My girls were tucked in tight after jammies, clean teeth and a story. We are all home and together. We are blessed. We are blessed. We are thankful and we have more hope for the future than you can imagine. I can feel it.. FINALLY! I can feel the intense excitement and passion of nearing a diagnosis for our sweet Annabelle Grace! I know it's on the horizon. I know we are getting closer! I know we could not have made it this far without each and every one of you. Thank you. 
Sweet dreams tonight. Count your blessings. Your family, loved ones, your healthy babies in their bed sleeping, thank God tonight for all you have. You're blessed. We are blessed for our girls, AK and I are blessed for one another and our family is blessed to have you. Thank you. 

Hopkins has stepped back up

I spent a lot of time last week pulling my hair out and struggling to find the most simplistic, fastest most efficient way to bring Annabelle to a diagnosis. Im scared to death to invest the time into reinventing the wheel purely because of insurance regligance.. but if it's what I need to do on my own, and put forth all the leg work - I'll do it without blinking. Because really, we don't have time to sit around and blink or think about what's next.. like a gunshot , we need to move as quickly as we can into whichever direction we need to run.

I spoke with our pediatrician several times and we framed a plan together. I called CHKD and asked to speak with someone in their Genetics team and explained our situation. Here's how that went.

• We can absolutely see a geneticist. However, the process of course is legnthy - and even if it takes only a few weeks to be seen, that is still a lost few weeks without answers.. so in order to expedite the process....... :
• I need to have our pediatrician order all the lab work and tests that Johns Hopkins has already ordered and also whichever tests they have determined need to be ordered next. (I didn't know my pediatrician could do this!)
• Therefore, I need to call Johns Hopkins and figure out just which tests these are that Dr. Young needs to order.
• In the meantime, I will work to have all the records, notes and assessments documented from Hopkins Genetics team moved to CHKD so they can begin to look at her case. 
• As soon as the tests are in from the bloodwork, at that time I can get in right away with a Geneticist at CHKD, WITH all my records AND tests and make it the most efficient visit with them to begin to *fingers crossed* formulate a game plan / diagnosis / treatment(!)

I called our pediatrician and she nearly jumped thru the phone with excitement. She also had news to share about the insurance issues.

• Medicaid does not cover anything at Hopkins because they are out of the state of VA. They will not cover anything at all moving forward.
• She called United Healthcare on my behalf as our pediatrician and pleaded her case as to why this child needs this testing performed ASAP. To both our surprise, United Healthcare agreed to pay for the Genetic Testing(!!!!), however, they will not do it at Hopkins because the hospital is out of their network.
• United Healthcare only covered our last visit to Johns Hopkins because we were considered 'traveling' and it was charted as an emergency visit... very different from a scheduled Clinic visit.

I understand now what has been going on. Frustrating yes, but a sigh of relief to know that at least they are now on board to follow thru with the testing.. we just need to figure out how to do it.

Now I just needed to speak with Hopkins and begin to move everything. . . . I called Hopkins and explained my plans. Immediately I was transferred to a Genetic Counselor. The lady that I spoke to was extremely soft-spoken and sympathetic. She began to apologize repeatedly for the confusion on the scheduling departments behalf. She explained to me that under any circumstances should I have been told there would be a delay in scheduling Annabelle based on her condition, I agreed... but... there is also this insurance thing that has been holding us up. She asked what was happening and quickly disregarded the concern. I informed her of my plans to move Annabelle back to CHKD where insurance would follow her in the state of Virginia and she advised me not to do that because of the amount of time we would waste moving everything, "I agree, and I do not want to move Annabelle's care, I want her with Hopkins, I want to continue testing - but you have to understand that I have been calling and received the run around for nearly a month. My daughter doesn't have months to continue to wait to be scheduled. We don't have the money to pay for this testing with cash. We barely have enough money to continue taking off work and making the Maryland trip! Above all, we need answers, fast and I am pleading and begging anyone that will listen to her desperate mother to help us. If CHKD is willing to do so immediately - that is who I need to follow, please help me move forward at Hopkins, or help me make the move to CHKD - regardless, we need to move and fast."

She paused for a long moment and asked quietly to talk with me about Annabelle's current condition and what changes have been made since we were last seen. I explained the placement of the NG Tube at their advice and the continued to decline. Not a fast decline, but definitely not much improvement like I prayed I would see. She apologized to me for what was happening to my daughter and began to speak words that made me both sick to my stomach but promised me hope on our journey. "Mrs. Bishop, I do not want you moving Annabelle, please hear me out. I am so sorry for what your family is going thru and to hear about Annabelle's condition - however, I want you to know that within this department, we have seen many 'Annabelle's', we feel as though we have a finger on what is happening to her little body. We continued testing, I believe we will find you a diagnosis. We have treated many of these same cases and would feel best to continue to keep her in our care at least until we can place a diagnosis and treatment for her." I exhaled and smiled the biggest sigh of relief. For the very first time I thought to myself "Oh my gosh, Im not alone! There are many more of me and Annabelle's out there!".. then the guilt hit me, "Oh no.. there are many more Annabelle's out there... my God I don't want ANY one, ANY child having to live this! :( " Once she explained the situation and their experience already with this type of condition, I knew immediately I cannot move Annabelle - the best chance we have to helping her is by keeping her in the hands of those that have experience dealing with this already. I agreed with the Genetic Counselor "Thank you. I will, I will keep her at Johns Hopkins. You tell me what I need to do and we will be there."

I was transferred back to scheduling and he confirmed more of my insurance information and assured me that insurance would be handled from here on out with Hopkins and that needs to not be a worry that I carry with that hospital any longer. He then read the most beautiful words, "We want to see you next week Mrs. Bishop. 1:00pm, a team will be waiting for you."

Thank God, we've made headway! We've made progress! and poor Annabelle couldn't escape my tight arms fast enough, the moment I wrapped her in them. This weekend was the break in the clouds that my sanity and stress needed. I felt energized (somewhat). My nerves are still shot and I no longer have any control over them.. but at least I didn't find myself in a sulking pit of sadness all weekend. I found myself outside and enjoying life with my little girls!

We went to the State Fair Saturday. I was truly worried to death about the trip. I packed half a pharmacy and parked super close in case we needed an emergency escape. As we walked around, I scanned and placed every single paramedic and medical personnel I could find 'just in case'. Annabelle did alright. She was tired and sat in the stroller 99% of the time. I took her on the Ferris Wheel and she cried until she gave up and laid her head on my shoulder and just watched the world around her. Annabelle enjoyed seeing the Animals, she was a bit surprised when she met a real-life cow for the first time.. I don't think she believed me when she recognized that a cow was not the size of the picture in our books at home.. in fact, a cow is much larger! :)

Madelynne had a wonderful time at the Fair. I was a bit disappointed that Annabelle couldn't have more fun, but this is her life. She was just too tired to enjoy much and that's ok. At least she had a better scenery than the four walls of our house and Mady was able to get out and run her little heart out.

This Week so far


Monday we have an appointment with Occupational Therapy to conduct an assessment to address Annabelle's continued therapy needs. There are a few things the Speech Therapist has addressed we need to have assessed, and I also would like to begin Annabelle in Feeding Therapy. She is still not eating well at all. On the days she really has an appetite, she cannot eat an apple and sometimes potatoes without spitting most of it back out to take another bite - then repeating the process. She is forgetting the Chew-Swallow process and I have no clue how to teach that to her. AK and I are both scratching our heads. Who would have thought that 6 months without eating, and she would forget how to do so.. I would have never guessed this is where we would be.

Tuesday Annabelle has an appointment with Dr. Young to touch base in the office again and also address some skin pigmentation issues that I have been noticed appear more and more lately across her body. The picture is a bit difficult to really tell what I am talking about (it's much more clear in person, I promise).. but there are three spots on top of her leg and one around the side/back of her calf. Her skin forms these splotches of WHITE skin.. they start out very small and grow larger and larger. They're everywhere. She has several around the back of her neck / top of her back that began looking like these and have grown so large that the entire back of her neck is a white patch of discolored skin.

The more I read about Inborn Errors of Metabolism, this is actually a common sign. I don't know if that makes anything more reassuring or not - but at least it does solidify that hopefully were on the right path to the correct diagnosis. 



Wednesday Annabelle has Speech Therapy and a consultation with our Clinical Coordinator with the county / Health Department. I need to sign more paperwork and discuss a couple concerns and changes that I want to make with her care moving forward.


We still have not had any luck finding care in our home. My wonderful grandmother has been a god-send and is staying home with Annabelle each day, rocking her and loving her all day while I cannot. I pray every 2 1/2 hours Annabelle will take all her feedings and I can avoid having to leave work to give her a bolus via pump to ensure the feed is met. I hate having to pull away from work - I need stability in my life for more reasons than one!


Annabelle & Madelynne's vain favorite past time is playing with my phone and watching themselves in the camera to take pictures of them self or the other.. I quite often pick up my phone to find 35 new pictures taken.. most the time they're blurry, but these were actually pretty cute. (I need to ask her how she changed the settings, and perhaps she can give me a tutorial on how to work my phone .. )

Plan B.. err....... Plan M, N?

I've made a small amount of headway and cleared a couple things with insurances as to why things are being brought to a halt.

1. Johns Hopkins will not accept Medicaid completely, not as a secondary insurance or at all. Because we have VA Medicaid for Annabelle, they will not follow us outside of the state for a diagnosis. Medicaid will follow us for treatment outside of VA but not to explore a diagnosis. 
2. That leaves us with United Healthcare. I still (and will always) continue to pay for a health insurance policy for Annabelle. I do not ever want to reach a point that she is denied medical care because of insurance reasons therefore I would prefer her to be covered by two insurance policies than reliant on only Medicaid. (That's working just swell for us now, huh? :insert sarcasm:) Because my employer does not provide me benefits, I pay for a private insurance policy that I purchased for myself, Madelynne and Annabelle. It's a Virginia specific policy but should travel and follow us. United Healthcare is pulling the exact same string as Medicaid, they will follow us outside of the state for treatment but not for a diagnosis. 

My pediatrician called today to touch base. She was upset because I haven't spoken to her in a few weeks and I confessed that I was holding my breath to believe the NG Tube was fixing all our problems :( For the first few weeks after the tube was placed, Annabelle started doing wonderful. This weekend she began a downhill slide and it's only progressed faster since. Yesterday I received a call from the sitter that her behavior changed abruptly and it was worrying our sitter. Belle was playing and suddenly started to cry and wanted to be held. She didn't want to be moved or put down, she laid her head on her shoulder and clung tight completely emotionless. I immediately headed straight there and found Annabelle in the same condition. We brought her home and Annabelle found herself an early bedtime without much fight. She slept for over 12hrs. This morning Annabelle has remained the same way. Extremely quiet, she will not speak any longer. She doesn't want to play or be put down - she only wants to be held with her head on your shoulder and snuggled tightly. This isn't normal 2yo behavior. This isn't ok... and I had to acknowledge that.

I told Dr. Young how Annabelle has progressed over the last couple weeks and we both agreed that this temporary pause in her exploration for a diagnosis cannot continue - I need to pull myself back together and put my viking helmet back on because the NG Tube clearly did not solve all the problems (I need to stop lying to myself.. really). We discussed our options and the situation heavily about insurance companies and Hopkins Genetics. Dr. Young explained to me that if I am relying solely on United Healthcare to cover this genetic testing, that I might as well kiss the prayer goodbye - it's not going to happen. I need to figure out another strategy to get the testing done.
Here is what we've come up with:

• Our best chance at getting this testing covered is by having Medicaid cover it. In order to do that, we really need to move back to the state of VA. 
• Dr. Young will see if she can find out what tests need to be ordered for genetics and SHE can order the labs. I can go somewhere to have the labwork done and then when the results come in, I take the results to a genetics counselor to finish the process.
• Dr. Young knows a genetics team and can pull some strings to have her seen, but the team is with the Health System (VCU). I didn't respond and she said, "I know hunny... we can slate that as Option C."
• When I was at CHKD, I asked and was informed they have a genetics team at The King's Daugther's Hospital. Albeit with a waiting list but I wonder if I moved the Hopkin's Consult information to CHKD and wanted to meet with them as an Emergency Second Opinion (with the persuasion of Dr. Young on the phone with them too of course), if I could get in sooner and begin the process there.

Those are my game plans for today. I have a flood of paperwork to process for Annabelle and her health coverage. I have more bills that are spiraling from every direction and of course it's also that time of the month again that all her prescriptions are running out and we begin the Refill-Insurance Denies Prescription-I call and plea with insurance-Pharmacy needs prior authorization from physician-Pickup script and likely pay it's full cost because insurance continues to deny. It's always a fun circus we run around. Maybe when I head to CVS I will push some pennies to buy a box of hair color to proactively start covering all the grey this kid is going to give me ;)

Agency Directed / Consumer Directed Home Health
This subject is plucking my nerves. I learned yesterday that I can continue to use our EDCD Waiver services of 42hr x week for Annabelle for basic home health care IN ADDITION to the EPSDT services of 16hr x day, 5day x week to cover the administration of her prescriptions, vitals, feeding pump and oral vs pump intakes. It's a lot of paperwork and strategic planning on who and how often we have all the nurses in and out of our home to help Annabelle (this is the exact moment in which AK reminds me, 'Hunny.. you need to be at home. You need to stay home with Annabelle, eliminate all the traffic, germs and strangers in our house and be with our baby girl, she needs her mommy'. That thought process remains in my mind constantly and the guilt is beyond overwhelming. But the reality is that today I need to buy a $500 prescription, and that isn't possible without us both having a job. It's a sad, frustrating reality and choice we have to make on behalf of our family... it's the world we live in). Anywho! Because the EPSDT Waiver is Agency Directed, I cannot hire the nursing staff that comes to our house, they do. But the process is that they post the job and I am notified when someone picks it up - it's been three weeks and no one has picked up Annabelle's care/job. That leaves us with zero nursing care and the responsibility on me to come home each day, every three hours to administer her feedings and vitals when she cannot make the oral intake. It's insanely frustrating and again, my hands are so tied that I have to stand in limbo and just hold my breath!

Please smile and wave when you see me on the news, I can't promise that my crazy won't lead me to this point one day. It's your baby - to an insurance company, Annabelle is a number and an expense they do not want to incur. In our lives, she is our Annabelle Grace and my baby girl. There isn't a mountain too high that I will not climb as her biggest advocate to help her fight.

I do want to say thank you. To every one of you that continue to pray, support and love our family without judgements. We don't always have great days, everything isn't always beautiful and smell like roses but we are real - we are living just like each and every one of you.. we're just trying to move about this life as gracefully as we possibly can with heads held as high as we can hold them on that day. 
Thank you for loving our daughter, both our daughters. 
Thank you for praying for my sanity and the strength of our family. 
Thank you for the endless amounts of words of encouragement - I cannot begin to tell you how heartwarming and 'real' it is to read your words. This hell feels very alone and isolating most times. I feel like I am suffocating and no one knows it. Annabelle only see's our family in our little Chester home at 2am when she is suffering and expects mommy and daddy to help her and we cannot. But to know that at 2am when we are alone in our dark house, terrified with our baby girl and clueless as to what to do - the flood of security and humbleness that we feel knowing perfect strangers, family and friends are praying for us - sometimes is all that gets us thru those nights. I don't feel alone much anymore at all. In the darkest, most quiet nights I rest knowing Annabelle's name was spoken in someone's prayers that evening. I cannot pray enough for her on my own but the amount of warriors that you all are, supporting her will carry us thru this. I hope one day to post the most amazing news that we have a diagnosis. I long for that day and my heart beats so hard just thinking about it. Together we will make it happen, WITH Annabelle we will find a diagnosis. We just have to continue jumping thru the pathetic healthcare's hoops to get there.

Happy 2nd Birthday Annabelle

I don't know how to begin to write this post.. I don't know how much detail to share with perfect loving strangers that are following my daughter's journey. I want to keep this post about Annabelle and the celebration of her second birthday, but it's taken me almost a week to write because my heart and mind cannot stop sobbing. I never knew her birthday would come with such a flood of emotions. I never knew how hard of a wall I would hit and that it would take days and days to recover. Ive never been so bitter and disgusted with the medical world and heartbroken watching my little girl. Our family has been delivered the very worst of the last two weeks and they happen to have fallen around our little fighters birthday. So here is my attempt to share with you all the high level, happy highlights of our weekend with Annabelle Grace. 

Friday, September 20th. Happy Birthday Annabelle!

Thursday night when I laid her in bed and hooked her machines to begin the night feeding, I found myself sitting on the floor with my chin resting on her mattress watching her. AK literally almost had to drag me out of her bedroom, "This is the last day of our baby being 1! She will be 2 the next time we see her!" I was so proud of her as I watched her sleep, but at the same time so sad to reflect on her last 'year'. I could feel the sensation of sadness filling my body but I pushed it away.

Friday morning I was awake and ready for the day far before she woke up. When Annabelle ran into my bedroom, I smiled and turned around and immediately began to sing and dance like a crazy person, "Happy Birthday to youuu! Happy Birthday to youuu!!!....." Annabelle looked at my with a horrifying expression, literally screamed and turned around and ran away! .. I ran after her singing and scaring her the best I could. We finished our birthday song with plenty tickles and giggles. Of course she had no clue what this all meant, but I was determined to make it a happy day for the family. Mady sang to her over and over and before we knew it, the morning was wrapping up as everyone made their rush for the door to part in their separate ways.

Friday was a stressful day at work for me. In the midst of working, I received a phone call from Johns Hopkins. As soon as the number appeared on my phone, I smiled and jumped with anticipation. The conversation quickly led my stomach to drop so fast I wanted to be sick. "Im sorry Mrs. Bishop, your insurance company, both United Healthcare AND Medicaid have continued to deny genetic testing with Annabelle. We cannot schedule her and our physicians cannot continue any testing.. Im sorry". The conversation was much longer and I pleaded for help, resources, other ways to work around this, I even discussed the possibility of moving forward as a cash paying patient and from the tone of his voice, that isn't even an option as you have to have enough cash up front to begin the process... there is no way I can produce the amount of cash that they are discussing. If we do attempt to proceed as a cash patient, the process changes and the consult will need to be reassessed with another physician - to get on the books to begin this process, will take us into the middle of 2014 at the earliest. She'll be dead by then without help. The rest of the details are enough to make you sick to your stomach and I refuse to type them. I hung up the phone and stared at the wall in a daze. I continued to blink to move my mind from what just happened and refocus on work and I struggled. I felt like my entire life just took a sudden shift - a drop 50ft down faster than you can blink and I don't know what to do. My stomach was empty, my heart was POUNDING thru my chest and I looked down to see the hives spreading all over my arms. It's my daughter's birthday, and what kind of news is this?! I was disgusted.... but still, I was at work and needed to stay productive the best I could for the day.

When I got home that evening, I swept Annabelle into my arms and sang to her over and over. I needed to cry but I don't like my babies seeing that.. it makes them feel helpless as if they've done something wrong. I like to wear a smile for Annabelle, always. AK wouldn't be home for a while so I decided to get in the shower with Annabelle. I love holding her skin next to mine and standing in the hot shower together. She lays her head on my shoulder as the water hits her little back and I can let tears fall without anyone knowing. I enjoyed that time with my baby girl. I kept talking to her about being TWO and how much I loved her, how happy I was and how much of a blessing she is to her daddy and me. Annabelle understands far more than anyone gives her credit for. She is extremely intuitive and absorbs so much around her that you wouldn't expect. AK and Mady arrived home and Madelynne was BEYOND herself with excitement about the big surprise that night. She knew we would be going somewhere fun and couldn't wait! I told her to go pickout a princess dress of her choice from the playroom and get ready to go. We dressed Annabelle as Princess Jasmine and then packed all her things to make it out the house and an evening around feedings. I feel like we have to pack half our house to leave these days.. but I try to do it as discretely as earthly possible... any effort to pretend there isn't a tube on my daughter's face and she isn't so sick is my #1 goal.

Disney on Ice - Let's Celebrate!
Annabelle LOVES 'mouse', Mickey / Minnie Mouse. Grammy wanted to do something for her birthday and asked what she would like. I was nervous about the first birthday our family would celebrate without food / going out to dinner (it's what we always do. birthday person gets to pick the restaurant and everyone joins). If Annabelle can't eat, darnit we'll go to a show instead! It was a great idea and worked out perfectly. I couldn't thank grammy enough. She is my rock lately and keeps my head held high and spoils my girls rotten when I can't.

Both girls had a WONDERFUL time at the show. I was beyond impressed at how much they enjoyed the characters. To be honest, I was impressed at how well the show was myself. Annabelle only became restless after intermission and once we hooked her up to the pump. She runs a fever every time she is on the pump, and she gets so sleepy - if she isn't in her bed, she's restless. Still though, she was wonderful and never whined or complained. Both girls had a wonderful time and Mady was in complete awe :) I felt so blessed Friday night. It was the best distraction from the day's news. I didn't even tell AK yet, I couldn't. I didn't know how to say the words out loud and I knew he would get upset and mad and there isn't anything we can do. I didn't want that distraction, burden or worry to ruin our daughter's birthday evening or party..



Saturday. Party Day! 
"You're the Apple of my Eye"


The only food that is safe for Annabelle right now are apples. I couldn't figure out how to plan her a birthday around no food or a cake, and then it occurred to me that I COULD serve apples.. apple juice.. apple chips.. etc. I'll make it an apple party! Apple Of Our Eye! It was perfect.

Saturday morning was a struggle for Annabelle. She didn't rest well Friday night and she was miserable most the morning Saturday. I was becoming so worried about her for the party and prayed she would take a restful nap. My anxiety was rising Saturday morning also. I needed to tell AK what Hopkins told me and I knew it wasn't going to be a pleasant conversation. I needed to start getting my house together and packing things for the party, but my mind couldn't concentrate. I literally felt like I was walking around in a fog and separate from my own life. I needed to put my game face on though. I needed to smile on behalf of my daughters. I needed to make the most of the day for everyone and I did. I gave myself a pep talk in the shower and begged myself to pull it together and relax.. we loaded the van and dressed the kids as cute as they could be and finally started to make our way to Carytown, Cartwheels and Coffee for the party.

I wanted to be there early to setup and have everything ready because I knew my nerves wouldn't be able to handle anything last minute. I was so anxious to get the day finished. When we arrived, the girls quickly began to play and the laughter started.

With each little friend that joined us for the party, the noise level grew. and grew. and grew. and grew. It quickly turned into complete stimulation overload in my head but I looked around and everyone smiling, and the kids running and playing and laughing and knew I was the only one feeling this way. "My God Ashley, what is wrong with you?! Then it hit me. Like a flood or a sky high brick wall it hit me, "Annabelle did it. She made it to the birthday we didn't think she would. She is playing and laughing.. but dependent on a feeding tube. Dependent on medications up the wazoo. She doesn't eat anything beyond apples. All her systems are being affected so very quickly and ...... insurance has pulled the plug to continue to help her. It's cheaper to bury Annabelle than it is to spend the money to waste the time digging for a diagnosis when she may not make it to the diagnosis anyway. Omg, so is this the last birthday my daughter will have? Is this the last party I throw for Annabelle? Is this the last time I sing her song? Oh my God - please let this day slow down and please help my daughter!!" I felt so alone in the most crowded, loud room of Carytown. My mind was flooded with the reality of what was happening and I couldn't slow it down. I found Annabelle in the room and decided I would attempt to make myself look busy so people wouldn't speak to me as I watched Annabelle and refocused to how blessed and grateful I am. She ran over to her sissy and surprised her from behind with tickles. Both girls gave the biggest belly laughs and continued to run and play. My heart slowed down a beat.. I exhaled and decided that would be my focus for the rest of the day. WATCH my girls and let them be my comfort during this day. I can get thru this...

Soon it was time to do the birthday 'cake' and begin opening presents. Annabelle needed a feeding so it was perfect timing to have all the kids join and start doing other things so Annabelle could be stationary for her feed (and, I could snuggle her as much as I wanted).

The 'Cake' was made of cardboard boxes and within each 'slice' of cake that he kiddo choose, there were prizes inside. Some prizes were toys, bouncy balls, stickers, stamps etc. It was my best alternative at finding a way to keep the 'cake' tradition in a birthday party and blowing out candles, but something that even Annabelle can enjoy since she cannot eat cake. It was a hit. The rest of the kids enjoyed apples and apple juice as Annabelle started to open gifts.

As soon as presents were finished, the party time allowance was wrapping up and my wonderful friends went to work to dismantle the party in record time. They loaded my car as I sat with Annabelle because she was hooked to her tubie and then I paid for the party. I was so grateful for all the friends that joined us for Annabelle's birthday. The overwhelming guilt that I felt after everyone was gone was intense, that I didn't get an opportunity to thank everyone individually enough. Annabelle did wonderful though. She loved every bit of playing with her friends. She ran around and played her little heart out until she crashed from sheer exhaustion, lol. But she did wonderful. At the end of the day, I think all the kids were worn out and had fun. That's all that matters.

Once everything was wrapped up and our final bags were packed, I told AK we needed to go.. but of course life happens and Mady needs to potty. I told AK again, please, I need to get out of here... Mady was going potty so Annabelle decided to make one last lap around the play area for some last minute giggles. My patience was gone and I felt like I would unravel. I reminded AK again to leave.. Mady couldn't find her shoes. Finally I looked at AK and grabbed him, "I am NOT kidding, I am so serious when I tell you I. Need. To. Leave. Now!" He looked at me terrified. I've never said anything like that before but he could feel my arm and hand shaking like a leaf when I grabbed him, he knew right away something was wrong and told me to go outside and he would have the girls in two seconds and meet me. The car ride was miserable. Every time Mady would touch her balloon and it made the noise, my skin curled and I would yell at her. Annabelle was struggling and needed a nap so she cried and apparently dug at her skin until she made her legs bleed. I needed to escape and just run away. When we finally arrived home, I laid Annabelle in her bed to rest while Mady found a comfy place on the couch. We unpacked the car and I exhaled. Friends joined us for dinner and provided the girls with friends and distractions and I retreated to my bedroom to 'clean'. I needed to be away from all the chaos, the noise, life. I needed to exhale and my friend knew that. She sat on my bed as I cleaned and we just talked.. she listened and I complained and let it all out.. I needed to do so. Annabelle was beyond exhausted after a short bit of playing and went to bed without a fight. We started her feed around 8p and she handled it very well.


Around midnight Annabelle woke up, screaming. She was miserable and terribly upset. AK and I struggled to figure out what was going on. Poor Mady couldn't sleep over Annabelle's crying and so I carried her downstairs for a distraction and change of scenery (btw, this isn't as easy as it used to be.. gathering Belle and heading downstairs now involves tubes: feeding bags, pumps, machines, IV cart, etc.) We gave her another dose of Omeprazole in hopes that maybe it was only her reflux that was bothering her. After a while she started getting sleepy and we laid her back down. I tried to relax and go to sleep without any luck. I tossed and turned and stared at the wall with wide eyes. Annabelle woke up again, crying, and we repeated the long process. Again I laid back down and tried to get to sleep. Annabelle this time, bless her heart, fell out of the bed(!). In our house, when Annabelle falls out of the bed, it seriously sounds like a tree fell on the house upstairs, or Mady fell from the top bunk. She apparently hit her face on her IV cart when she fell and hurt her chin. What a miserable way to wake up :( Belle was having such a bad night and I had yet to get some sleep.. both of our frustration levels were running out. Finally I managed to fall asleep... I drifted into the worst dream of my life... a nightmare of my worst fear...

My dream:
Annabelle is doing well from the tube and thriving finally. She is starting to speak and walk and act as a normal little girl should, but the diagnosis process is taking far longer than we expected. Annabelle's health starts to fall again and the seizures reappear. My biggest fear begins to play in my dream: Annabelle has a seizure and will not wake up from it. We rush her to the hospital and she slips into a coma. While in a coma, we watch her systems continue to collapse faster and faster until the doctors join us and ask us to make a decision on Annabelle's behalf. I remember in my dream yelling, "This isn't real! Wake me up! This isn't my life, this has to be a nightmare! Wake me up!" AK is holding me and trying to explain, 'hunny, this isn't a dream - we've known this could happen... we need to help our daughter as selflessly as we can. We need to do what is right for her and Mady and the rest of us. She deserves to be in a better place!'. I was so upset in my dream and kept begging for it to all stop - but it wouldn't. I wanted to escape the reality but I couldn't. Finally my dream carried me to Annabelle's funeral and I saw my baby girl in a casket. She was dressed in comfy clothes, with her Gigi (pink and white PBK embroidered blanket) draped over her and Lambie tucked under her arm.

Sunday
The imagine of seeing Annabelle laying there was enough to catapult me out of my sleep and sit me straight up in bed. I grabbed the sheets and opened my eyes as fast as I could and then it hit me..... I was going to be sick. I ran straight to the bathroom and couldn't stop vomiting. I was shaking like a leaf but there wasn't a tear in my eyes, I was in complete shock and beyond ill. There's no way in hell I could go back to sleep.. I didn't even want to go back into the bedroom. I made my way into the kitchen and tried my hardest to drink something without luck. I tried eating something without luck. I sat on the couch in a daze and watched the sun come up and my house begin to come to life from the darkness of night. Finally I decided that if I was going to be awake, I might as well start cleaning and be productive, the best thing that could happen is that it could distract me! I scrubbed, and scrubbed and scrubbed everything in my kitchen. I was SO happy when I heard Annabelle's pump start to go off that I was allowed upstairs to see her finally. I wanted to wrap her in my arms so tight and feel her warm skin and watch her breathe. I unplugged all her tubing and gave her a kiss. Then I climbed in Mady's bed and held her until both girls were awake. It was Sunday morning and I felt like I was a walking zombie... walking thru never ending days of hell.

The day unfolded and we set the house up for a small birthday party for Annabelle with only family. I wanted to have the party at the park down the road but the rain had turned the mulch/dirt into mud and truthfully I didn't want Annabelle exposed to any more outdoor allergens. I just crossed my fingers and prayed family wouldn't bring germs into our house and leave them.
 

 The party went well and I found myself a lot more relaxed and less anxious than the party on Saturday. I was still flooded with nervous and anxiety but on a more manageable level. I was at home and in my own comfort zone.. I was also too exhausted to put forth the energy of being a nervous wreck. Annabelle had a good day. She played her little heart out with her cousins and friends in the playroom upstairs. Finally it was time to open presents, and just as we did the day before, I hooked her to the pump while she was sitting on the floor and opening gifts. Annabelle's little expression is priceless when she see's something exciting, she exclaims, "Ohhh! WOW!!!" with a big smile. She is grateful for any and every gift, big or small. I love it. I love watching her little face light up and I love watching her get spoiled as much as she deserves.

I

I do this constantly.. I was sad to stumble upon a picture of me looking like this, but this is honestly what I do almost all day - I stretch the tension out of my neck literally all day and night. I'm surprised this isn't what 99% of pictures look like that I am in.. exhale Ashley, refocus, collect and paint your game face back on.

 She did very well for most the day. She did get tired as usual but fortunately for everyone she didn't have any upsetting bouts of pain, screaming or needing to go straight to bed. She just lounged on friends and family for some extra snuggles and love.

Annabelle Grace is hands down, the strongest little girl that I have ever met. She has been a blessing in our lives to teach us just how strong we can truly be even when we doubt everything we're doing. Annabelle has taught me to be the best mommy I can to Madelynne and Belle both. She has taught me to show how sisters should love and support one another, how our family will stick together during difficult times. I have unfortunately shown my daughters what it looks like when mommy hits an ugly wall but they also learned how much daddy also supports and loves their mommy when she needs help. I cannot be the only one in our family that is a rock, sometimes even the strongest ones fall apart and it's up to the family to continue pulling us together. 
This was the hardest weekend of my entire life, hands down. But my girls and husband have pulled me thru it. 
This has been the hardest year of Annabelle's life and I have carried her to every doctor I can, Madelynne has snuggled her sissy when she needs it and colors her pictures when we are away and daddy always makes sure she is extra cuddled when he is near. 
This has been the most difficult reality for AK to watch his little girl, both daughters, wife, family, home, jobs, etc struggle because of this nightmare we are living and have been dealt with. He must stay our rock, he supports all of us individually and carries every ounce of the weight in our household that I do not to keep us balanced. He is the second half of me. He knows how to dress baby dolls, do laundry, pay bills and cook dinner while keeping the grass cut and lights on without asking for support. Annabelle's presence in our family is priceless. She was given to us by God and we have all learned from her in more than one way or another. Annabelle is strong, she is more loving than anyone you can imagine. Annabelle is opinionated, feisty, she is a fighter, strong-willed, sensitive and intuitive to everything and everyone around her. I couldn't have raised more incredible kids if I tried. You couldn't pay me enough money to believe that this is my life, these are my children and this is my husband. In the midst of all these things that I am bitter and angry because we've been dealt with - I also could not have been more blessed. We are so very blessed. AK and I are blessed with two beautiful, amazing little girls. We've made it two years with Annabelle completing our family and have grown so very much since September 20, 2011. Happy Birthday baby girl. What an incredible ride it has been and what a joy and blessing I pray it continues to be to watch you grow, thrive and teach us all the things in life that are important.