Monday, March 30, 2015

Drowning in paperwork

Paperwork, bills, schedules, meetings and more paperwork - it's never ending in our house for all Annabelle's needs. Spring is the time of year a lot of Annabelle's medical necessities expire and must be renewed. Beside all those items on our agenda, I am also scrambling to finalize the paperwork process to getting her help. 

Filling out paperwork should be simple, but for Annabelle it isn't. There are SO many questions that are difficult to answer.

Does the child have a seizure disorder?
-No. she does not have a diagnosed seizure disorder but she has an extensive history of seizures.

List allergies and the reactions to them.
-That's difficult. She's never had a real diet. She has a limited diet and we have no clue if it's affecting the disease but were *pretty sure* she isn't have an allergic reaction. A year ago, 100% of our tested foods came back positive for an allergy. This year, zero came back positive.

Give a brief history of your child's symptoms.
-Brief? Gracious! I could write a novel! Brief is impossible. What is most important to share? Our past concerns that may/may not be present today? = inability to maintain body temperature, constant seizures, zero growth, extreme lethargy, liver failure, monthly vaginal bleeding... i could go on
Or should I explain our concerns immediately? = Muscle weakness / fatigue, inability to control her disease, manifestation of bowel issues including impaction/constipation/building of stool that will not move without intervention, blood ammonia levels, etc.

Then we move onto the section where they began to ask, in a very discrete way, if my daughter is depressed... I remember answering these questions and bawling my eyes out almost two years ago when I realized how depressed my baby had become. At not even two years old, Annabelle was so clinically depressed she wouldn't speak, eat, communicate, crawl (couldn't walk) or cry. If she was frustrated she was scream and continuously beat her head into the ground. After months of therapy, she began to smile again. But as a parent, it's the hardest thing to realize your infant is so unhappy and you cannot do anything about it.

Two years later, the paperwork is still not easy, but we have come a long way.. the questions they ask, really sting. They're honest questions and a fair means of judgement for a child that is battling a life such as Annabelle's. But as her parents - this is hard. I cannot imagine how hard it is for a toddler. I am amazed at how well she carries herself at the ripe age of 3.5yo - I am in awe of her courage and strength when she has every right to be bitter with the world.

I want Annabelle in this hospital immediately, but we are at the mercy of so many hospitals and doctors to get there. We must have letters from anyone we've ever worked with. We need so, SO much documentation that is makes my heart crumble at the timeline it's taken. I pray we have everything together and we receive everything we need soon.. it's been nearly a month of this process and I want everything completed! I want so badly to hear those words "Annabelle is accepted and we want to see her". We need help and answers for her so badly, I just wish it were a faster process.

We are still waiting on:
  • Pathology slides from every endoscopy and colonoscopy she's ever had performed. Annabelle has had 5 endoscopies and 2 colonscopies between 3 different hospitals. Which means we have a whole lot of begging and pleading for medical records from multiple places.
  • ALL GI Records, including:
    • Personally written physician letter
    • All office notes
    • Reports and pathology from any/all other GI procedures - we have about 100
    • Anesthesia records 
  • Allergy records
    • Physician letters and notes
    • Skin testing
    • Patch testing
    • Lab records 
  •  All other records for procedures performed, we have:
    • Xrays
    • MRIs
    • Bone Age Scans
    • EEG's
    • Genetics
    • Nissen Fundoplication surgery
  • Primary Care Physician
    • Physician letters 
    • office notes
    • growth charts
    • blood work
    • etc
Obviously there is much more but fortunately I have FLOODS of paperwork on my own already, including all our in-home nursing care notes and documentation, I have a lot of personal notes written by doctors and specialists etc.

Until we have all this information back, from literally 16 different resources, we cannot move forward. I wish we could say we are patiently waiting.. but we're not.

Annabelle is beginning to show signs of losing energy and going downhill. She has spiked a rapid decline in almost 10months, but my heart and mind is constantly fearing it. She is definitely losing energy. She is becoming more and more verbal, telling me that something is wrong and she doesn't feel good. Her body is becoming weak to the point she cannot run and play for very long durations without collapsing into exhaustion. Her bowels are becoming harder to manage and her little body is showing signs of a major shift. If she goes hours without a feed (because she BEGS not to hook to her feeding pump), her color rapidly leaves her skin, she turns heavy yellow/orange and splotchy. She gets so very weak and can hardly keep her eyes open but she cries and begs for 'help mommy'. The threshold for stabilizing her body is getting difficult... not unmanageable but significantly more difficult than it has been, which gives us validation that we need to move faster than Annabelle deteriorates. Annabelle is so so strong, but I do not want to test her little body any more than she needs. We need to get to this darn hospital, or something has to give. Riding his roller coaster into the unknown does not sit well with our family. It's terrifying. Our prayers every night are open ended - we don't have clarification on anything beyond 'we made it today... let's try again tomorrow'. I need more than that. Annabelle needs so much more than that. We need to know how to keep our baby safe and thriving. The two of those are not possible for her at the same time. It should be.

Monday, March 23, 2015

Annabelle is getting weak.

She is tiring so quickly and having a harder time hiding her pain from us. She squints and gasps while holding her belly and then lies if you ask what is wrong. Her appetite is slowing and her spirits are dropping. Ive watched this evolution happen before, we haven't been here for almost a year but it's happening again. I have no idea what has initiated this decline but I pray we find help soon.

Last week I contacted our GI. We need help with her bowels asap. She prescribed a new cocktail for us to attempt to help Annabelle.
  • 2 x 4oz cup of Miralax mixed with warmed apple juice (1 dose in the morning and 1 after she's asleep)
  • 2 tablespoon mineral oil thru g-tube (1 dose in the morning and 1 after she's asleep)
  • 10mg Douculax 
  • Prunes
  • Lots of fluids
  • 1/2 sized Fleet enema 1x day until fully cleaned out
  • A&D ointment on her bottom to protect the tears and bleeding 
This cocktail does NOT include any of her daily medications or treatments. This is only to help her lower GI move stool.

Her tummy is miserable, and reasonably so. She's always crampy and terrified to have a BM which only makes matters worse.

Her energy is depleting. I took her to the store and she couldn't walk more than a few aisles without being carried. She cannot ride her bike one street away to the park and make it back home, which means she can no longer ride her bike during walks that are further than 3-4 houses..

Saturday night, while Annabelle was asleep, she rolled out the bed and fell on the floor. A usual occurrence for a toddler in anyone else's home. A terrifying moment for our house at midnight. I ran to her bedroom as she cried in disoriented pain.. When Annabelle rolled out of the bed, she was hooked to her feeding pump and tubing. She had rolled herself around the tubing and when she fell, the connection ripped from her stomach before the safety disconnected before fully ripping the tubing out. When I found Annabelle in the floor, I noticed the tubing was unhooked (which is something she typically does on her own when she isn't feeling ok) and I simply cut the pump off to give her a break for a while. I tucked her back into bed and we all went back to sleep. The next morning she laid in bed moaning in pain. I asked her repeatedly what was wrong and she wouldn't tell me. Finally she began to cry and asked me, "Mommy, will you look at my tubey? Something wrong." It was bleeding. The bleeding had slowed down from the 9hrs prior that the injury happened, but her poor tummy was a mess. Her nightgown was covered in blood and her stoma (hole) was torn. Mommy guilt flood my entire body. How did I not know last night that this happened? Annabelle BARELY cried, I thought she just scared herself and fell out of the bed. Oh my poor baby :(
Her tummy is much better but very sore. A sore gtube is not very helpful when dealing with a poor lower GI system.

We need help and guidance from skilled doctors that understand this disease. We are at the mercy of their expertise on what our next steps should be for Annabelle and the treatment of this disease and how its destroying her GI system. Our prayers are never-ending to get Annabelle to the hospital she needs to be. Right now shes tired, she's sore, she disheartened but she still smiles thru the pain. She is so strong.

Wednesday, March 18, 2015

You're so brave and quiet, I forget you're suffering

My small hero is growing so quickly. She's laughing, learning, dreaming and falling in love with life in ways I always prayed she would.. She sees life with a very critical perception but somehow finds all its beauty still..

The last several posts have given you an idea on how Annabelle is doing.. Things have not changed for the better, her appetite is improving but her body is not functioning any better. 

Her fevers have ended, that's a plus.

She continues to have a persistent cough that is sounding more an more terrifying like EoE and less like a cold. She's wheezing and her energy is cut in half. She can hardly run across the house with dropping into a hellacious coughing fit.

We are having so much fear over her bowel functions. 
Months ago, Annabelle began to regress from potty training and started having accidents in her panties. We were so frustrated but worked patiently with her.. The problem continued to manifest over the same time the Eosinophilic disease relapsed. She is now confined to the point that she is no longer having BMs on her own. I spent an hour in the pharmacy yesterday, with a hoodie over my head and tears on my face... reading every label and talking with the pharmacist to find the best relief for my baby girl. I wanted a liquid stool softener, though I learned that would not help Annabelle. I did purchase two pediatric enemas, (in addition to several prescriptions of course). My hope was that the enemas would be more comfortable for Annabelle. The next day our nurse administered two of them with very little results.

Her lower GI is failing terribly, and fast. I do not know if the Eosinophilic disease is attacking and damaging her lower GI or if we have a different problem all together. Annabelle has had issues since birth with her lower GI system, losing her bowels has been a conversation that has never been far from our doctors mouths to us.. just as hard as I fought and prayed against a feeding tube, I am fighting and praying against a colostomy bag. My poor child's body is ridden of  this disease and the medical interventions to help her. My poor baby needs help so badly before we lose the opportunity to slow the destruction down :( She is so happy and confident though. She is so brave and quiet, I forget she's suffering

Happy St. Patty's Day!
Annabelle was able to visit many of her little friends and play dress-up.. After a few short hours though, with a shuddering breath, Annabelle came to my side pleading to go home. Before I could say a word, she began to say bye-bye to everyone in her path. She was playing and feeling fine as far as I could tell, until I hooked her to her feeding. Her feedings make her nauseated.. she often cries to tell me "Mommy, I HATE my tubey, I HATE boo-boo's" We do not use the word 'hate', in our house, but there is no amount of parenting inside me that will correct her from that statement..... because, I hate her tubey and boo-boo's too.

I took Annabelle home and she was very weak. She couldn't walk by the time I made it thru the door. She laid on the couch for a short time before she began to plead for me to snuggle her so she would feel better. I feel helpless during these times, but I provide my daughter the comfort of my presence, if only that comfort is a finger or hand to hold onto as the pain and sadness passes. She watched a movie and I gave her a warm bath. Annabelle fell asleep without a fuss. She was visibly saddened and I was secretly breaking for my daughter.

Paperwork is almost finished for Annabelle's biggest trip ever. We are praying with everything we have that she is accepted into the hospital and research center. This hospital will save her life and provide our family with the answers, hope, treatment and help we have needed for so long. The paperwork is a timely, exhausting process.. it takes weeks/months to complete and I am nearing the end. As things begin to wrap up, our fear begins set, "What if she gets accepted? What if Annabelle's dream comes true and she is blessed with the opportunity to find all the answers she needs? What if we finally get the chance to go to this hospital? .. .. .. Can do we do it?"

During Annabelle's one and only benefit last fall, I met an incredible man. It was late in the evening and he reached out to me to speak privately. His first words he spoke stung me like a wasp "I know. . I know what it feels like. I know what you're going thru and I am so sorry.. I know how badly you would have never wanted or ever believed this would happen to you. I have watched you mother your girls all evening with a smile but I see your pain when others aren't looking.. I know, I've been there too." I was speechless, but he was not. He shared every word and fear that my mind couldn't pronounce. I agreed with the worries, we both met with the opinion on how much we HATE this for our children and how horrible of a situation it is that we would never wish on our worst enemy. He did know. He knew exactly what it was like, the fear, worry, hate, bitterness, loneliness and most of all.. the feeling that helping your child is out of your reach and so unfair. He knew. His child was plagued with a brain tumor and endured more pain and scary months/years than I could imagine.. he disagreed, as parents, we both have done the same. Our stories are different but the emotion is the same. The love parents have for their children is endless and painful. The generosity and compassion of perfect strangers was the blessing that saved his childs life.. a few weeks ago he reached out and asked to do the same for Annabelle. Medical bills are collapsing our families walls and a promising opportunity for Annabelle is in the near future. I cannot wait to submit our application and begin this next journey, but we cannot do it alone. Please share Annabelle's story. Please share the website Justin and his family have started for Annabelle. But above all, please continue to pray for this amazing little girl.

Thursday, March 12, 2015

Slowly losing energy

Our sweet little girl isn't feel so well lately. I wish the weather would hurry and change so that she could go outside for some fresh air and run and play! I believe it will do us all some good.

Annabelle is so smart. She's verbal about what she wants and needs, and she questions everything. Age 3.5 is fascinating for any child, but it's so special for us to watch our little girl learn and grow in her own unique way with this disease. She questions most all foods or meals, and while her nurse and I make most decisions on what is permitted in her diet, Annabelle will always ask one of us "Does my DADDY know you are giving me that?!" she is hilarious.

Her appetite has been depleting lately. She isn't hungry much at all, and even her favorite foods find themselves left at the table and throw away more than they're enjoyed by Annabelle. She told me the other night while crying, "Mommy the food is stuck.. the chicken is stuck in my froat" (froat = throat). Eosinophilic Esophaghitis destroys their GI system and esophagus. Most times in adults, food impaction is one of the first ways they gain their diagnosis. Annabelle's biopsys just two months ago were grim and indicated the disease had relapsed, we are praying that whatever she is telling us is not true. If the food is honestly getting stuck while traveling down her esophagus, than we have a bigger battle ahead with this disease. I give her some water and tell her to swallow hard until it feels better. Her breathing is steady and she doesn't appear to be in any distress, but the complaints are not ending.

Another angle is the lower part of her GI. I know i've mentioned this numerous times, but her BMs are just getting worse and worse. This past week alone she's needed three enema's to allow her body to pass stool. She absolutely cannot pass stool without assistance anymore. The pain is excruciating and traumatic. My biggest frustration is that I don't understand why this continues to happen! She gets so much water and fluids, her diet is better than it's ever been but the issue continues to get worse. She takes medication daily to help with this issue... I pray our doctors will explore this soon to help our sweet little girl.

While we're on a kick with bad news. She's also developed a cold. It began as a cough and has quickly escalated to fevers and a deeper cough. While it only began two days ago, it's progressed so quickly that our doctor wants her seen right away. Fingers are crossed she is ok... she's so weak and exhausted. From the enema's, to her poor appetite and the persistent coughing, Annabelle's little body needs a break!

Thursday, March 5, 2015

Annabelle's feeling much better this week. Our nurse is working deligently to find a method between the madness to help her BMs. She's had a few more episodes this week of severe constipation and becoming impacted - between multiple meds that should help her, they're doing very little to provide her any relief. 

She was able to get back out into the snow one more day with her daddy. I personally was not a fan of her being in this cold, but Annabelle is fearless and beyond thrilled to have the energy and opportunity to play like other kids in the snow. 

The girls made a snowman and we're all so very proud. 

Then comes Annabelle the Destroyer! Haha poor thing, she didn't mean to known down Frosty..

She's becoming more restless since going back on the steroids. We've been back on them for a few weeks now and I can already begin to see our family settling back into the baby-steroid-motions. It's miserable, there's absolutely no way around it. It's hell. It's frustrating and difficult to not get angry with Annabelle and her behavior. She pushes buttons like any 3.5yo but the steroids just make her temperament explode in different directions. She doesn't sleep well. She rarely naps. When she gets frustrated either with something, someone or herself, she screams bloody murder like you wouldn't believe. She breaks into a heartbreaking meltdown over small things and shes very squirmy. The tight car seat is the worst :( 
That's life on steroids.  I hate it.

Annabelle is crazy though :) and still just kicking butt better than we ever prayer she could!


Crazy Hair, Don't Care

Tuesday, February 24, 2015

A crappy lower GI

A persistent battle with Annabelles little body is her lower GI system. No one will tell us what the problem is.. I struggle to even find a doctor to look into it for us. But the constipation and short amount of time that she becomes impacted is just unreal. Last night was no different. 

Soon after getting home, she began to complain that her bottom was hurting. I asked her what was wrong and she wouldn't answer me. She's too scared to talk about any pains. She would rather lie and tell us she isn't in pain, than tell us where it hurts so we can help her. It's heartbreaking. But it's our reality and in her defense.. When she needs help, it usually does involve more pain before it gets better. I don't blame her :(

Our evening was spent upstairs in the bathroom for two hours. Fortunately our neighbor is kind enough to take Mady to to dance class so AK and I both were able to stay home with Annabelle. She was trying so hard to pass the stool but it was visibly excruciating. I won't go into detail.. Just know this poor kid went thru hell. Once we were able to make headway, I ran to the store to grab more enemas and administered that. 

Annabelle is 3 and a half. She laid in the bathroom floor literally shaking from head to toe with pain so excruciating it took her breath away. As parents we try our best to encourage and help her.. We cause her more pain than we ever would want to see her in and she cries so hard in confusion... Confused why sissy is at dance class and she's paralyzed in the bathroom floor surrounded by her parents with tear-filled eyes. 

I wish I knew why this happens to her. Annabelles diet is so much more balanced than it's ever been, she takes mineral oil daily and we push fluids thru her tubing constantly. It's like her bowels just stop and won't move. 

I pray we get answers soon for this. It's getting so much worse when everything points that it should be getting better.

Monday, February 23, 2015

Snow fun and updates

Virginia has quickly become an artic place of misery. We're not fans of cold in our house and Annabelles little body doesn't handle it very well. We prioritize spending as much time making memories and having fun as we can, but safety often serves its limitations to the fun. I didn't want to pass this opportunity though. Sledding is just too important to miss. 

The snow fell and we got about 6-8in of fluffy white stuff. Oh it was so beautiful to watch and peaceful the next morning as the sun came up. Annabelle looked out the window and exclaimed "santa came!!" .. She's associated snow with santa. Oh boy 

We didn't wait long to decide it was time to hit the hills for some fun. Both girls were dressed in multiple layers. Annabelle sported a few more accessories that protected her Tubey and more for her face and head (that she quickly took off) 

She had a truly time walking in the snow but didn't take much time to adjust. She couldn't wait to drop in the snow and make a snow angel. She immediately asked to build a snowman. Within minutes she wanted to ride sleds! 

Annabelle is such a daredevil, she loved the adrenaline of racing down the hills and hitting the snow. She yelled and screamed, begged for more and laughed so hard. she was so happy. She was loving it!!! 

Then I watched her fall. I smiled and tuned into her every movement. She stumbled more.. I gave her credit that the snow is difficult to walk in.. And then I looked at her face. Just precious.... But no longer rosy red, her cheeks were white and lips were pale. She started getting so aggravated that she couldn't stand. My intuition was in panic overdrive and I began to get nervous. We've never let Annabelle play in the cold like this before, she doesn't balance her body temperature well. I decided to pack her up and carried her home as quickly as I could. 

Annabelle faired fine in the snow. The cold left her with a heavy bleeding nose and pooling blood in her tummy (I'm thinking from swallowing her nose bleeding). When I got her inside, her temperature was 94.1 (not nearly as bad as I thought) she didn't care at all. She wanted to go back and play. 

The girls had a wonderful time in the snow and spent several snow days taking extra long naps and snuggling mommy and daddy. It was a much needed break and opportunity for our little family to find moments to laugh and play with one another. 

Now... We're ready for summer ☀️