Sunday, October 13, 2013

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.

Monday, October 7, 2013

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.


Wednesday, October 2, 2013

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.