Wednesday, July 31, 2013

Overdue Update



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

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

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

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


Meanwhile.

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

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

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


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

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



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

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

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

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

1:00am
Annabelle wakes up screaming bloody murder. She didn’t want anything to eat. I couldn’t tell what was hurting. Her diaper again, was soaking wet. She was shaking with a temperature at 94.2 that took almost an hour to bring up. By 2:00am I started crying with her.. I didn’t know what to do or how to help my baby girl. She’s hurting and it’s breaking my heart. She looks into my eyes and expects mommy to be able to soothe her, to fix whatever is doing this, and I can’t. Mommy’s should be able to fix these things, or at least know what to do to help. Kid hits their knee, give them a wet paper towel and voila, All Better! They shut their finger in the door and there’s no blood.. put a bandaid on it and like magic, the pain is gone! Annabelle is begging for me to pull a mommy trick out of my bag and all I can do is sit there and cry with her. She finally gave up around 2:30 am and I went back to bed. My mind was racing. My heart was still in my stomach. My stomach was in my throat and my eyes were burning they were so tired and bloodshot from crying. I ran my fingers through Mady’s hair and cried myself back to sleep.

5:00am
She woke back up again, crying, but with significantly less energy. I pulled her out of bed after I brought her a cup and she laid her head on my shoulder. I sang and walked slow laps around her room as she whimpered. Some moments she cried hard and mad, some cries sounded so defeated and you could hear her just beginning for relief for it all to stop, and some whimpers were just that.. whimpers of exhaustion. I held her for about 30min until she fell back asleep and laid her into her bed, snuggled with her blanket and Lambie.

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

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

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


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

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





Friday, July 26, 2013

another day of no answers

Last night Annabelle ate Sweet Potato fries for dinner. How fun is that?! They were bitter and absolutely not my taste, but Annabelle surely didn't have any complaints. She dipped her fries into her bowl of Neocate Nutra and enjoyed her mini little buffet of food. I was so proud of her and enjoyed every second of watching her have 'dinner'.

Annabelle hasn't run any fevers, neither up or down in almost two weeks. Yesterday she has started to feel warm again. She was quite clumbsy last night. Her temperature never spiked, but remained around 99 which is very different from her new 'normal' temp of 95/96 lately. We could tell that her walking was becoming more and more difficult for her, she was slipping up and tripping over her own feet a bit more than usual. Finally she dropped to the floor and began crawling around the house. It's incredible how an infants instincts come to them so naturally that Annabelle knew the danger in trying to walk around when she wasn't steady on her feet.. instead of laying down on the floor/couch like she normally would - she used the energy that was actually carrying her through the afternoon and decided to simply crawl around continuing to play.

I enjoyed company last night and sat in her floor with two wonderful girlfriends, both of which have children with special needs. They are two beautiful women that have been some of the biggest resources to me and my family than I could have ever imagined. The three of us sat on the floor together and shared stories and insight as I watched my little girl enjoying life in the best alternative way she knows how. Many times she was walking and many times she would crawl, but the entire time she wore a smile and it was so refreshing to share a happy little girl with friends.

Annabelle was up again last night, unfortunately. She isn't comfortable at night any longer.. it's becoming more and more difficult for her to get to sleep and stay asleep during the night. We are making sure to give her medications soon before she goes to sleep so they should be carrying her through the night, sometimes she needs a cup to calm her tummy (when she doesn't have food on her stomach, she hurts.) and then other times I can't tell if she is in normal 2yo pain from cutting molars, etc. Annabelle is allergic to Tylenol so that isn't an option. If I give her Ibuprofen, her temperature drops and struggles to rise again. We've been offering Ibuprofen while we keep a close eye on her and it seems to be helping at the hardest times.. but that much Ibuprofen in your tummy also isn't good. It's a Catch 22.



Endocrinology called this morning with the results for Turner Syndrome; a genetic condition in which a female does not have the usual pair of X chromosomes.
The chromosome study we performed 3 weeks ago determined it was negative. Another bummer :(

Dr. Frances would like to see Annabelle again every 6 months unless something changes or a diagnosis points us back towards Endocrinology. We will be watching her Growth Rate closely for both bone structure, height, head growth and will continue to do Bone Age Study's at that time.

It's another day of discouraging news for us. It's quite sad and depressing to wish for a positive diagnosis for your child, but we are literally to the point we just want answers. Badly. Answers will bring us to opportunities for how we can help Annabelle. A diagnosis will help our family adapt to whatever has been placed in our lives. A diagnosis will allow our doctors to determine the best team of medical geniuses that Annabelle will need. A diagnosis will bring so much to our home, we pray it will be here soon.

Thursday, July 25, 2013

I owe each of you a big, Thank You

During the chaos of what is taking place in our lives at home around Annabelle, I need each and every one of you to know just how grateful, blessed and loved we feel to have you part of our "Lives".

Most every night AK will drop his head and ask me, "What's wrong Ashley...What are you thinking about?" I guess my painted smile forgets to remain frozen and it drops from time to time. What am I thinking about? That's a loaded question and to be honest, most the time I can't really answer it.


I think about the future a lot..

I dream about our Christmas Tree this coming winter, today is July 25th and that means in exactly five months there will be glistening lights, laughter, presents, candles burning on our mantel around the filled stockings and little girls giggling as they run down the stairs.
But will they? If Christmas were to arrive tomorrow morning, I cannot say for sure it would look that way. Annabelle spent hours last night crying, AK and I were both frazzled and clueless as to what to do to help her. This morning she appears happy and smiling but who knows how long this wave of smiles will last. All weekend she struggled to even keep her head up, she was exhausted in her little body, she was hurting and couldn't tell us how to help her - What will Christmas look like for us? Will she be able to enjoy all the fun presents? Will she tear through wrapping paper and throw tissue paper over her head while squeeling with excitement? That is what every 2 1/2 yr old should be doing at Christmas time but I cannot imagine this is what our Christmas will look like with Annabelle. Last year she laid in the middle of our living room floor, laid her head in daddy's lap and watched the fun all around her. That image will always be scarred in my memory, Christmas marked the downhill slide for Annabelle.
I want so badly to be able to look at my baby girl and imagine how much fun she will have in her future, how painfree she will feel, how 'normal' our family would have returned and how much laughter and cheer will flood thru our home.. but I cannot do that. When I look to our future, I struggle to see that happiness in our home - I am fighting so very hard for it, but I drop my head in sorrow when I dream about it.


I think about the past a lot..

My pregnancy with Annabelle was nothing less than terrifying, each and every day was a struggle from the moment I found out I was carrying her. Just as denial as I am in right now, I was in denial all day during labor with Belle - it wasn't until midnight that I surrendered the reality that Annabelle would soon be born and I cannot do anything to stop it, she was born at 1:21am.




Videos:
Immediately after Belle was born via emergency c-section. She was carried by the Neonatologist moments later to the NICU.

Annabelle growing stronger each day in the NICU

I spent the first several weeks watching Annabelle struggle to thrive and gain weight as she screamed thru each feeding. I drove her to every doctor I could find until I made enough of a scene that they referred me to a specialist and they found the blood in her stool. We moved Annabelle to a safe diet from then forward. I struggled to build a connection with Annabelle, I was busy in life caring for both Mady and Aidyn, working second shift and sleeping in short intervals between getting home from work at 1a, feeding a preemie and waking at 6am with toddlers. I kept Annabelle under my wing and watched her like a hawk. I've always known something was wrong with Annabelle, since my pregnancy began I have told AK on more times than I want to admit, "Something just isn't right... I hope everything is ok, but something isn't right." He told me I was worrying too much and I believed him. The best time I spent with Annabelle were her months between 9 months old and a year, during that time she blossomed into her incredibly fiesty personality that we see now. She was happy for the most part, she smiled and giggled, Mady and her sister finally started to bond and watching the love between my two girls, and the admiration Annabelle has for her daddy made my heart flood to her, finally. Soon before she turned a year old is when the pain began for Belle and we started struggling with foods. That is when I returned the Dr. Mom hat to my head and put the shield over my heart to figure out what was happening to my little girl. We had an incredibly hard road from last summer to where we are now.. I would have to say not much has been easy during the last year, and it's only moved faster and faster downhill over the last few months.

My love for Annabelle has changed again, and I often reflect and think about this.. how I am feeling and if I am loving her enough. I am. It's subtle notions that I find to remind me, "Ashley, you're doing alright by your two girls.. you do love her enough, you are fighting and you are doing what a mother should." I do tell myself this, but I do have doubts all too often. I am petrified that I am looking to heavily at 'There is something wrong with this child in front of me, my heart is telling this and I need to figure it out.', I hope I am not seeing too much thru those eyes and that I am seeing Annabelle for who she truly is, every ounce of her personality and attitude.

She tests our patience often.
She drew on my hardwood floors a couple nights ago with a black marker and I yelled as I demanded her to "March your butt to the stairs and sit in time-out, right now!"
I cleaned the marker up easily and then joined her at the stairs to discuss what she did wrong and why she was in time-out. She never cried the entire time she sat there until I joined her.. she then clasped both hands onto her lap and dropped her chin to her chest and started to force a whimper. I used simple words to explain, "Annabelle, we do not draw on the floors. We only color on paper, do you understand?" She pouted her bottom lip out as far as it would go as she lifted her eyebrows to look into my eyes.. still forcing her chest to rise and drop thru her fake cry. "Annabelle, Do. You. Understand. Me?" She squeezed her tiny eyes as tight as they could clentch and somehow managed to drop a tear as she nodded her head, 'yes'. I couldn't help but fight the smile that was quickly getting ready to flood over my face and I told her, "Girlfriend, you are something else." Her entire body jumped and opened up like a butterfly as she squeeled "HAAA!!!!" with the biggest smile you've ever seen. She's a character, and full of more personality than I have ever seen out of Madelynne.

I watch the things she does and smile without even realizing I am doing so. I tell AK constantly, "She is so cool, like really, Annabelle is probably the coolest almost-two-year-old I know. I think she gets that from me". We agrue about why she is so cool, but agree that yes, she's pretty awesome.

I lay in bed and toss and turn at night and think, "I miss those girls.. I wonder if I would wake them if I just crawled into one of their beds?" I sit at work and my heart literally sinks when I look at pictures of them on my desk, and then my heart absolutely crumbles when I think of seperating my girls in any way - Mady would be lost without Annabelle, I would feel too guilty if I took Belle somewhere fun without Mady.

I have realized that I love both those girls so intense that it physically hurts at times. I didn't know what that type of love could feel like, but I do now and it's impossible to describe with words. It comes with a flood of worry though. A love as heavy and deep as my heart is, as much admiration as my love is invested for those girls also comes with equal amount of fear. When you love someone so much it hurts, and you watch them unable to achieve all the things they want in life, or you watch them unable to enjoy simple life's pleasures, you stand next to them as they struggle and live thru pain - that intense love you have for them, is exchanged for a tremendous amount of pain in your heart and soul.

I relive our past memories with our family often, and that most often leads me to this place of sorrow. There are so many happy, wonderful moments in our lives with our family that lift me when I drop my head, but there are equal memories of terrifying nights and prayers to help soothe my baby when I as a mother, cannot.


I think about our present often.
Where we are today, right now, this minute and second in time.

Today we are living for every moment that God has blessed our family for what it is. A small home, dated linens, some chipped coffee mugs and a dryer that gets off balance at times. Our home is filled with every room of memories, the sink that I first bathed Mady as I stood in only pants and a bra because she pooped all over me when I took her diaper off.. but I snuggled her close because I was worried she would get cold. The stairs that both girls have taken a tumble down when learning how to crawl up and down them. The front door that has smooshed toes. The dog that was a baby when we brought home our first baby. Our bedroom where both girls slept their first nights at home.. God has blessed our home with memories, all our belongings, two beautiful girls and dog and fenced backyard. God has been very good to us and blessed AK and I both with incredible jobs that allow us to provide for our family. Jobs that are incredibly understanding and have become and extended part of our family during this difficult time.  
God has given us you.

On the nights I drop my head in silence and think, when I don't believe anyone is watching and AK asks, "What's wrong Ashley.. What are you thinking about?" I think about the past, I dream and pray for our future, I process what is happening in our home as we speak. I pray to God to give me the strength to see all the happiness and good times in our life, to protect my heart from the bad and use it as motivation to fight harder for the future. I ask God to help me understand this life a little better and to trust in his blessings for our family - and he gave me you. Family that we spend the holidays with and exchange Christmas cards, Friends that we fill your home for your kid's birthday parties, or less personal friends that we smile and make small talk while sticking a straw in a juice box for our toddlers together. Co-workers that I share stories around the coffee pot when we join for our 7:30a or 3p Java, co-workers that AK updates anytime they asks how Belle is doing, you are perfect strangers to Annabelle and may have never met her to know just how amazing she is.. maybe you work with one someone in our family, maybe you're friends of a friend that asked you to share Annabelle's story. Maybe you simply stumbled upon this very simple, spur-of-the-moment blog to read what people keep sharing across Facebook or email. Whoever you are, I Thank You.

This world is too often full of cruelty, hate, violence and selfishness but somewhere in the midst of making our way through life, I check my mailbox and shuffle thru bills upon bill upon bills . . . . and there is a card to our family from someone that is simply thinking about us.. wants to wish us well.. wants to wish Belle 'Get Well Soon', wants to let us know they are thinking about us. On a spontaneous night as I drive home from another very long day at the hospital, AK comes home with bags FULL of food and meals prepared for our family so I don't have to cook and clean, because we have incredible friends that wanted to help and donate dinners. It isn't even the tangible gifts, but the sincere messages, or the floods of prayers that are being sent upstairs that are carrying AK and I thru this nightmare. There is nothing else in this world that I could ask for than two beautiful healthy little girls, that gift and decision rests in God's hands and the more prayers that are being sent his way, the more grateful and honored we are to have you praying for Annabelle. This incredible little girl has the biggest support team of cheerleaders that I ever though imaginable, I am so very proud of her and honored to stand next to this Super Baby Belle. 


Oh, and please do not get me started on the tears that have fallen any time I navigate to the YouCaring Site that my best friend, Andi developed for Annabelle! She, and many others have asked on so many occasions how they can help. I beg for only prayers but I can appreciate how helpless that may feel to those that are begging to lend a hand in any way they can. I have watched families struggle and I do sit at night praying for other boys and girls that are fighting their own battles and I too beg and pray to allow me to help in any possible way to lessen the burden on their plates. There isn't anything in this world I wouldn't be proud to do for those other families, I would move mountains for them if they told me which mountain, I would be honored to scrub their toilets so they can spend their time with their loved ones instead. I wear my heart on my sleeve and I am very proud for every ounce of what gets burned for doing so at times. The times in which I can offer a piece of my heart to those in need fills me with more joy than you can imagine. And today, each and every day, with every prayer, dollar donated, card in the mail or sweet gift for the girls, I learn just how incredible and loving of a support group we have around us for Annabelle. My heart literally FLOODS with admiration for all of you, Love for each of you that love my little girl and a world of Thanks for your help and support during this time.



I do want you to know just how helpful the donations have been for Annabelle..
She is covered on two insurance policies and both have the ability to deny medical treatments, they both send us on a circus and deny prescriptions and prescription refills, they both attempt to double charge for treatments if I do not pay meticulous attention to every detail. AK and I are blessed with incredible careers. But I am not an employee, I work as a contractor, and when I do not work, I do not get paid. When Annabelle has a doctors appointment, I take her. When she has a procedure scheduled, I am there. When she needs routine bloodwork done, it's scheduled and I drive 40min out of our way for the best Pediatrician Phelobomist in Richmond so we do not have to stick her arms/hand/foot more than once. Last week alone Annabelle met with seven different doctors. We traveled to Norfolk one day and then Chesapeake two days, we made trips to the pediatricians office twice and several trips around pharmacy's. This means I was only able to work a handful of hours, no matter how hard I tried. You would laugh if you could see my paychecks right now, I cry. Great insurance and a wonderful job isn't helpful when you have to fill your gas tank several times a week. Insurances do not help when you arrive at CVS and Annabelle's prescription is $600. CVS, by the way, doesn't take payment plans.. if you don't have the money for the $600 prescription, you don't leave with it. I look in the backseat at my crying baby girl and know she is in pain from one problem or another and I know she needs the prescription to provide her with the relief that no child should have to suffer from. I cannot tell my daughter with tears running down her chin, "give me 3 days to work out the logistics between the physician, insurance and pharmacy to get this prescription covered sweety, im sorry." No - my baby is in pain and I hand over the $600, that's just what you do as a parent. I am fighting like hell to do everything in my power to help my daughter right now and I will clean up the mess I have made later when the dust settles.. It's not easy though, and it's getting harder and more difficult to do.

AK and I have built the memories in our home, and gained all our beautiful possessions without an ounce of help from absolutely anyone. We have never asked for a penny from anyone even when times were very, very difficult. It's our pride and hardheadedness that has carried us this far and I am beyond proud to say we have made it alone, together. But this is a new battle, this is a struggle that even the most wealthy get hurt. Our healthcare system has so many broken systems and I will not allow my daughter to lose this fight or suffer because I cannot afford the prescription to provide her relief, or the gas to drive her to the best doctor the state has to offer for her disease. That is an honest reality that faces us, and when I began to see the selfless donations you made for our family towards Annabelle - the tears began to fall so very fast. Every little bit, every penny is another ounce of promise for Annabelle gaining relief, strength, the best doctors, treatment, care, medications, attention, and above all the love from mommy and daddy that we are home with her in the evenings to kiss her goodnight without an even heavier blanket of worry over our shoulders. I would never, and will never, ever ask anyone for help - but I can thank you from the very bottom of my heart, and on AKs behalf as well, that we are utterly grateful for your love and generosity for our family.


Thank you. This was a much overdue, but the most important post I may ever write, to thank each and every one of you for all you are doing.

Thank you,

for the prayers
well wishes
cards
gifts
girls easel
allergy medical bracelets
dinner, dessert, lunch, breakfast and WINE
oh, more wine
for the flowers
for the smiles you wear when you stare at your computer screen and watch the video below
for the tear that may fall when you feel in your heart what we do for this amazing little girl during tough days
lambie
babydoll bunk beds
great wolf lodge
eclair cake for breakfast at work
the tight hugs when you squeeze my girls
the gratefulness you feel when you take a bite of your dinner tonight and thank about Belle, all she is having are Sweet Potatoes tonight, again
for seeing Madelynne as a super awesome 4yo and not only a sister to sick Annabelle
for seeing AK and myself as normal everyday people, wearing our hearts on our sleeve and trying to make the most out of this life with two wonderful children.. that just need a little uplifting during the darkest days.

Thank You.
Thank You.
Thank You.

And bless Mady's little heart, I believe she attempted to dress herself for a walmart outing before she began showing off her best dance moves... that she only could have learned from her daddy ;)
Nonetheless, this is our little family, making messes and memories on a Saturday morning.. don't laugh at us too hard!



Wednesday, July 24, 2013

A general update.. how we are holding up, the truth.

An update on how the eating is going: It's not going so hot.

Here's the thing, I figured once we had food - all would be well, happiness would be restored in our home and Annabelle can eat something. What I DIDN'T consider however, now that Annabelle is allowed Sweet Potatoes, she thinks this opened the flood gates to ALL foods. I overlooked this thought process completely. We are all eating a dinner around the table, and she knows she can eat sweet potatoes, but doesn't understand why she cannot also eat our chicken, broccoli and sweet potatoes with the goodies like the rest of us. It's actually been harder than I anticipated.

The other downfall to introducing foods is how long it's taking her little body to start to digest solid food again. This isn't a comfortable process for her in the least. Each time we try to offer a portion of sweet potatoes, she spends the next several hours and night crying. I am still trying hard to decide whether or not it's just the process of digesting solid food, or if this is some type of reaction she's having. We're going to try to start taking a couple different approaches to getting her to eat the food from now - hopefully they will help provide her some relief.

GERD
For some terrible reason I had trouble believing that Annabelle could still be suffering from such intense reflux, she's almost 2 years old! Isn't this an infant thing? During the week she stopped waking during the nights and the pain seemed to start disappearing, I tried to wean off so many doses of the Omeprazole.. I quickly learned this was a terrible idea and it resulted in Annabelle hysterically in pain. This did provide me with a pretty clear trial/error and answered my lingering question, "Just how intense is her GERD, how big of an issue is it really?" - I will absolutely be keeping Annabelle on the Omeprazole twice a day and continue to maintain the same dosage. I am glad to know now that her GERD is well managed, but discouraged to recognize just how much a problem it still is. This is something that I will bring up with the GI if we appear to have any more issues down the road.

Speech
Yesterday was spent with a lot of time scheduling and speaking with someone at Pedicatic Connections; the wonderful ladies we use for Annabelle's BT, OT and ST. We will now be switching Annabelle from working with a behavioral specialist, to primarily a speech therapist! Annabelle's behavior, and her communication with us has dramatically improved the last several months after working with the therapist, her frustration level is managed much better and I have learned so many ways to help soothe her anxiety during medical procedures (sometimes they work, other times they don't, but at least I have some pointers up my sleeve to try when things get intense). Annabelle is trying so very hard to talk and use her communication with words lately. I have seen her blossom in her speech, she absolutely without a doubt is not even close to where she should be at 20mon, but she is trying and seems to have an interest in learning to speak finally. I believe it's the perfect time to bring in a Speech Therapist when the time allows during the weeks between medical appointments. We tentatively have scheduled these to begin every Wednesday at 9:30a; and in our home of course.

Medical Update
Dr. Young and I continue to touch base almost daily, sometimes a little longer. We have had several conversations regarding Annabelle's behavior lately. We are most concerned with the lack of energy she seems to have, and when she does have energy, how it comes in spurts and then she crashes very hard and fast afterwards. She is sleeping a lot, and when she does sleep, she is sleeping heavily on the nights she is not in pain. When she is in pain, it comes in very irregular waves and I cannot pinpoint what brings them on. I also cannot figure out to save the life of me, where the pain is coming from. We are discussing often her level of anxiety and emotionally how she is maneuvering through this ordeal. She is becoming more and more clingy (which on one hand, I absolutely love that she wants to snuggle and be held close most times), on the other hand, this is not a normal or healthy behavior to want to be held and anxious as often as Annabelle is. Under any circumstances do we blame her for demonstrating this behavior, but it is worth watching closely and helping her through each and every wave to continue to try to enjoy life. Seizures are spreading out and not occuring nearly as often as they were before, but times in which she stares at a wall and is 'spacey' is increasing. The nervousness and how clingy she is before and after her seizures isn't over though, she still demonstrates this behavior very often.



How are we/I holding up? The truth?

It's such a hard balance. I am struggling, I will not lie. Whatever energy I have possessed to keep me moving forward and keep the smile on my face, and keep my focus and drive in absolute 'over-drive', has left. It's gone and I am stuck in this defeated, exhausted body. I am absolutely worn out, physically and emotionally. I am exhausted more than you can imagine.

I am struggling each and every day to go home and stay productive, continue to prepare and deliver a well balanced meal on our table, keep the house cleaned, clothes washed and put away, appointments scheduled on our family calendar, Belle's medical books organized and up to date, her journals noted with the days updates/changes/highlights/lows, the blog updated, the dog fed, Mady tickled, both girls bathed and in cute jammies, 1 .. 2 .. 3 books at bedtime before prayers and lights out, groceries in the fridge, phone calls and emails answered, routine appointments: my own doctors appt, entire family eye appt, Mady dentist, work focused and meeting deadlines, etc etc etc etc etc. I am struggling and I feel like I am truly starting to fall short. It's hard and I know that I can cut myself slack, I do know that, but it's hard. I don't like feeling like I am coming unraveled. I don't like having any dishes in my sink before I go to bed, I don't like saying my prayers at night and reflecting on the lack of time I spent with my kids because I just wanted to go to bed as soon as I got home. I know this hard time in our lives will pass soon, I do. It's just very hard :(

Watching your two beautiful girls playing gives you the most energy in the world. But then watching your youngest baby girl crying her eyes out and having to look at her and think "Im so sorry hunny, I don't know what's wrong, I don't know how to help you, I can't do anything more than I already am....... and next week you will be crying just as loud, just as hard, you will hurt just as miserable as you are now and I won't even be able to promise you then that it will stop. Next week will hurt, the following week will hurt and maybe even the following......". It really starts to tear you down :'( It's the reality we are living in our home. Our small perfect little castle in Chester, VA.. The lights that are dimly lit at 2am as we are rocking a sick baby, this is our life, this is our reality, this is my hell. I pray this ride is over soon for my baby girl, for my family - I pray all our prayers are answered and she is blessed with relief from the pain in her body. With that.. I will get my energy back, until then, I will fight and fight to help her and comfort her each and every day. But right now, we are very tired.

Monday, July 22, 2013

A rough weekend

We’ve had quite the roller coaster of weekends.

AK joined us for Annabelle’s third trip, second reading from Patch Testing, Friday afternoon. He doesn’t usually have the time to join us for doctors appointments, so it was a relief and helpful for him to see what I am juggling each and every time we make a trip to the hospital. Last week alone, Annabelle saw seven doctors. To say she has the routine down is an understatement. As soon as she walked thru the doors of the office Friday afternoon, she marched down the hall chanting “Bubbles! Bubbles!”, Hey at least now she’s associating a hospital with bubbles and not needles – I will take it… and give the kid some bubbles, STAT!

Dr. Maples joined us very soon after we finished with the basic height, weight, BP, Temp, etc. She did the final reading of the Patch Test and then we discussed what our next steps would be.

While avoiding the top foods we have tested that came back positive for an allergy, in addition to the most common offenders for EoE – we will begin introducing foods into Annabelle’s diet. EXTREMELY slowly. Dr. Maples was very happy to hear about the game plan I decided on with Dr. Konikoff and she offered advice on which foods we should begin with and then gave pointers on things to look out for as we move forward.

If we start seeing any signs of a flare or EoE relapse, we will stop the food immediately and begin our EoE Treatment Plan that we have all agreed on. I will continue to keep a journal daily on how Annabelle is handling the food and what things are changing as we introduce more and more. Once we have a handful of foods that all appear to be safe and is in Annabelle’s diet without any reactions, then we will scope again and perform biopsy’s of her full GI tract. Hopefully we will be able to get 5-6 foods before we do another scope, at least that is my goal. This approach can burn us terribly though, because if there are 5 foods in Annabelle’s diet and her scope is not clear – we have to remove all foods and start from scratch, scoping between each and every food. So asking for too many foods and scoping between each one – is a tough fine line of a balance to choose, but I believe AK and I are becoming skilled enough at seeing signs of a flare that we will handle this process very cautiously and pray for the best for Annabelle’s sake.

We decided to begin with Sweet Potatoes. After two-three weeks, we will introduce another food (I think we’ve decided apples will be next).

From an allergy stand point, we will completely avoid: Milk, Beef (anything from a cow), Soy, Oat, Wheat, Rice (and a couple others, I cannot think right now..)

EoE most common triggers that we will also avoid are: Milk, Egg, Peanut, Tree Nut, Soy, Wheat, Fish & Shellfish.

So between those two lists of foods that we cannot trial, we are left with a lot of options for organic produce and a couple meats (turkey, chicken, etc). Cooking will be difficult without being able to use any milk/egg/soy/wheat/rice products.. that makes it harder for flours, ingredients, anything baked, absolutely anything pre-prepared, etc. I will get better at it I know.. and heck, Annabelle will likely have the healthiest diet of all of us by the end of this!


When we left the hospital Friday afternoon, we loaded the car and told the girls that we had a big big surprise for them.

My grandmother has threatened/almost darn near succeeded in purchasing a room for my family at Great Wolf Lodge on more occasions than I can count. I always, always decline and beg her to cancel the reservation – I do not like accepting gifts, and to be honest, I was really nervous about taking Annabelle to such a public place. This time however, Grammy begged me to take the girls somewhere fun – against my own will, but for the girls to be able to run, laugh and play and enjoy themselves. We didn’t have plans for the weekend.. and Annabelle had been in the car riding to and from Norfolk so many times this week, that she did deserve a break. Madelynne on the other hand was begging for an opportunity to cut loose and enjoy time with the family. She deserves it more than any of us, she has really been thru a tough time lately. I agreed to stay at Great Wolf, and the closer we drove towards the resort – the more excited and giddy I began to feel myself getting! I couldn’t wait to see the smiles on my girls faces, just the anticipation is beyond words at how happy it makes my heart.

We arrived and I woke Mady up. She didn’t have a clue where we were but she knew it was going to be a lot of fun.. she trusted me.. we found our room and both girls squealed with excitement! Their bunk beds were hidden in a cave inside our bedroom.. the room grammy booked for us was the ‘Wolf Den’ and it was SOOO COOL!! I directed Mady to the balcony and she looked outside at the slides and outdoor pool, her little face was priceless as she looked up at me “Mommy! Is that where we are going?! Is this where we live now?!”

AK and Mady spent the afternoon chasing each other and Mady challenged AK to ride with HER down the biggest slides she could find, I was shocked at how much of a dare-devil she is! I spent the afternoon carrying Annabelle in my arms. She didn’t want to get down.. in fact, I was only able to put her down a select few times which lasted a few seconds before the crying began and she wanted to be held again. She was very clingy – I was curious if she was just very overwhelmed at all the chaos, noise and stimulation of what was going on around her.. but if you’ve ever met Annabelle – on her good days, she doesn’t know an inside voice or many strangers! I was hoping she was just very tired. Shortly before dinner time, we rounded everyone up and made our way back to our ‘Den’, bathed both girls and dressed for dinner.

There was a buffet downtstairs that we decided to call dinner. Mady enjoyed making her very own pizza from scratch. I found a beef stew that I made three trips back for seconds and thirds and I spotted a wrapped, untouched/unseasoned, Sweet Potato for Annabelle. When we got back to the table, I cut it into pieces and then asked Belle for her cup, she didn’t want to hand it over.. I pushed the plate of sliced sweet potatoes her way and she looked at me very cautiously.. finally she started to dig in.

I couldn’t help it, but the tears were more than I could handle to fight back. I sat there looking at my baby in absolutely Awe. I stared into her eyes and watched her motions as she carefully lifted the fork towards her mouth, over and over, and all I could think about is how strong of a little girl she is. She is an incredible fighter. 113 Days Without Food. All the little girl can eat are sweet potatoes and you have never seen a toddler more grateful for only that! Annabelle has taught each and every one of us something. I’ve never been so grateful for all things in front of me until this journey began for our family.. Ive never looked at food so carefully before. When I pass someone on the street, check-out line or driving down the road, I find myself never judging anyone and ‘where they are’ in this life.. when people pass me, they could never imagine what our family is going thru.. my heart crumbles just the same because each and every stranger we pass may be living a life of struggles too – I find myself extremely patient lately, I am grateful for this aspect of the experience.


Much similar to when I cared for my grandmother for her last several years, I never knew the compassion and genuine love and patience for the elderly that you pass in stores or the grocery store – sometimes they are walking so painfully slow thru the aisles that it can become frustrating, but what you cannot see are how much hard work and determination it took for them to leave the house that morning, and possibly how much pain they will be in for the rest of the day from just this one outing. I always, always offer a sincere smile of encouragement to those visibly struggling to accomplish day-to-day tasks that we take for granted that we can do. But what you don’t know is how much my heart melts and aches when I see a little boy or girl running around, playing and eating a meal and then I hold my own daughter. Perspective. Annabelle has flooded our family with so much perspective. I will never allow myself to look past or forget what this feels like, it’s truly a blessing in a way and I hope in some way each and every one of you can embrace it as well.


Friday night after dinner, both girls joined all the kids around the fireplace for Story Time. I could tell Annabelle wasn’t doing well. She didn’t want to sit alone, she didn’t want to join her sissy, she wanted to be held tightly.. therefore I made myself a spot right between all the kids and I sat down with her in my lap to let her enjoy like the rest of them.

Bedtime was a struggle.

Annabelle was clearly heading downhill and I could feel myself filling with anxiety! I didn’t want to have to be stuck in a strange place, and not the comfort of our home if Annabelle is going to be struggling all night.. there isn’t much escape of privacy where you can console Belle from crying and not wake Mady. It took Belle quite a while to fall asleep – mostly from playing games with us and jumping out of bed to peek around the corner. Finally we turned all the lights and TV off and she gave up the battle. She woke several times during the night.. finally at 5am she woke up screaming terribly. I couldn’t tell if she was scared, disorientated, in pain or what was happening.. it took a while for her to calm down and even longer for us to get her to go back to sleep. Her sleeping looked a lot like: Her head wedged between my chin and chest with curls up my nose and in my mouth.. and her feet in AKs throat. She was extremely irritable and uncomfortable. She jumped a LOT in her sleep and remained restless. I surrendered my spot in the bed at 6am and couldn’t wait for everyone else to get up and we could go find coffee! Mady had a wonderfully AWESOME time sleeping in the top bunk of her bunk bed. She was beyond thrilled to tell us all about it when she woke up. (as if we didn’t know it just took place J She was happy). Breakfast consisted of Dunkin Donuts coffee, a sprinkle donut for Mady, and a cup of Elecare Jr for Belle. Annabelle again wasn’t doing so great in the morning either.. I feared it was all going downhill but I was hopeful for her and trying to maintain a smile for Mady’s enjoyment of our ‘mini-vacation’.

Madelynne and I had little Pedicures scheduled at Scooops Spa at 930am. They dressed her in a robe. Wrapped a boa around her neck and asked what she wanted to smell like for the day! We both choose strawberries and we got a sizzling scoop of strawberry bath suds in our bowl for our feet. Mady picked out both pink and blue – alternating colors to paint her toes and she choose a dark blue for mine. While her tiny feet were soaking, they sprayed her down with glitter and yummy watermelon spray and we listened to Disney Radio as I enjoyed my coffee and she made small talk with the poor ladies rubbing her feet. It was a wonderfully fun and relaxing experience. It was so age appropriate for Mady that I couldn’t contain myself in how much fun we were both having.


After mini-pedi’s we went back upstairs to change and pack the car. I checked us out of the hotel while AK took both girls towards the water. Madelynne immediately ran to find her favorite slides and Annabelle clammed up. I told AK to go have fun and enjoy Mady.. to let her run and play and laugh as much as her little belly could handle it. I held Annabelle for the rest of the day.

The real-life reality of Annabelle’s situation began to hit me harder and harder as the day progressed. She didn’t want to play, she didn’t want to be put down and I struggled to gain a smile from her every time I tried. I stood there, following Mady around with Belle in my arms for hours.. I held her close and she watched all the other kids play. Watching all the kids run around, laughing and enjoying themselves and then holding a 2-year old that very well should be running around just as much, is eye-opening to our reality. It was a tough balance to hold the smile on our face for Mady but not find ourselves discouraged on Annabelle’s behalf. A couple times I was able to get Annabelle to walk around and pretend to play in the water.. but just as quickly as she would splash in the water, she wanted to be held once more. She stared off with a blank stare most the time.. she looked like she could sleep, but she wouldn’t close her eyes. She seemed awake but just not ‘there’ with us. Finally I decided to make her another cup and try to get her to take a nap.. it worked, when she woke up she began screaming. I struggled to calm her down and she struggled in attempt to cry herself back to sleep but she wasn’t succeeding. Finally I told AK to gather Mady and we needed to get home. Annabelle was just having a really really hard time, this was nearly the third day in a row that she was struggling and it wasn’t fair any longer.. not even for Mady to continue playing and Belle suffer. Mady was wonderful and gathered her things and we all changed and loaded in the car to head home. I believe Mady seeing Annabelle at the hospital the last few days has given us the biggest help we could ask for in helping her understand Annabelle’s struggles. Mady has gained a tremendous amount of patience and nurturing for her sister, I am so very grateful to see the two girls bonding in this way again. We take care of one another in this family, that is how I was raised and how I intend to raise my girls as well.


 Look at those beautiful little curls!


 This is what Annabelle looked like most the entire weekend.




 


Since then Annabelle has been trying so very hard to have better days but she is also equally weak and exhausted. She is gaining more spurts of energy, but crashing harder and harder with each day. Her nights are getting to be difficult again, she is waking up crying a lot during the nights and having a lot of trouble getting any rest. She is sleeping a lot during the days and going to bed much earlier without gaining the energy we would expect from so much rest. Both our attempts at Sweet Potatoes have resulted in terrible, terrible nights of crying and days of uncomfortableness.. I think we just need to take the introduction of foods much slower to get her body used to digesting solid food again. I hope what we are seeing are not reactions from the Sweet Potato causing a flare, to be honest I truly doubt that is what is going on, but I am very cautious as to how often we are allowing her to try food. She is still very partial to her cup and Neocate Nutra, so we are still using that as her primary, 100% source of nutrition until we have gained enough foods in her diet to begin to make a transition.

I have spent a lot of time talking with our pediatrician lately regarding Annabelle’s last several days and she is equally curious as to how things are progressing. We have a couple new game plans established and I am using the resources all you amazing cheerleaders are providing us and putting them all to good use between Annabelle’s medical team and I. You all continue to amaze me at your selfless love and support for our baby girl and I cannot thank you enough. You’re all a blessing her our lives – perfect strangers but the biggest fans with the largest hearts I have ever had the pleasure of inviting to our ‘family’. Thank you all and continue to hold Annabelle in your prayers. We need more better days on the horizon, she needs more days to smile.