Sunday, July 20, 2014
The appetite stimulant that was prescribed is called Periactin, we've used this drug before and it did work, but not to the significance we hoped it would. Periactin was our last effort before placing Annabelle on a feeding tube last year. I prayed it would fix all her malnourishment issues and she would be able to safely nourish her body on her own and drink enough formula without needing a tube.. it worked, but not to the extent Annabelle was malnourished. We are giving Periactin a try now and it seems to be working well.. her appetite is slightly improving and hopefully it will continue to do so.
In the meantime, our GI still had numerous concerns about Annabelle's pain / sudden lack of interest in putting anything in her mouth. I have concerns about the Nissen and that possibly constributing to why Annabelle doesn't like to eat anymore. The GI had concerns about the penny that was swallowed a few weeks ago. She asked:
Dr: Did you see her swallow the penny?
Dr: Did anyone beside her sister see her swallow it?
Me: No. In fact, they both told me she DIDNT swallow a penny.
Dr: It did pass, correct?
Me: Yes, the next evening it did.
Dr: So we know for sure that was the ONLY penny she swallowed.
Me: Nope. Not a clue.
Dr: We need to do a scan and order multiple xrays ASAP.
While the orders were written and my doctor decided where we should be sent to have them done, I finished a few things from work and headed to pickup Annabelle from the nurse. She was asleep as usual, and looked just exhausted. On the drive to the hospital, I caught her sweet stare in the rear-view mirror, I jokingly told her "Annabelle Grace, if you are hoarding a random $0.36 cents in your GI system little girl, so help me, and so help you!" she laughed at my empty threats and I winked at her as I merged off the interstate. We made our way thru the hospital where we were immediately taken to back with two wonderful nurses. I don't know what strings had to be pulled to expedite the process, but I was sure glad we didn't have to spend hours in a waiting room with a tired cranky Annabelle.
I tried so hard to comfort and calm her down. It was successful - I pulled her out of her stroller and we just sang and began to make silly faces at one another. I asked if she wanted to send daddy some pictures and she was excited to do so. She loves sending pics/videos to people (kids and technology these days! lol).
Soon after she was more comfortable with the room, our nurses joined us once again and asked me a couple followup questions. They asked how long I could anticipate Annabelle to cooperate for scans. I had conflicting feelings, it could be good or bad - I couldn't tell. They then said that we would have to undress her 100% and put on a gown, that's when I changed my answer. "If you're going to have me strip her naked and put on that feared hospital gown, I guarantee we've just lost all hope for an easy series of scans! Im sorry, is there a Plan B?" There was -I changed Annabelle and we took a stroll to the ER where they have machines that operate much faster and more efficient. Thank the heavens for those brilliant nurses!!!
Annabelle did very well. The first 15min of pictures, I managed to manipulate my limbs to resemble an octopus to achieve the desires body positioning of Belle and keep her still. She did good. For every picture, I made sure to remind Annabelle to smile for the camera :)
Towards the end, we transitioned the xrays to lying down on the table - that's where things turned for the worst and it was a battle to the end to gain everything we needed. All in all, I would say things did go very well and with as little amount of trauma as we could. We left the hospital several hours later and I was never so happy to be home. Neither was Annabelle - she spent the rest of the weekend snoozing like a baby.
Saturday evening we enjoyed a night out at the Flying Squirrels Baseball Game with my company. The seats were great, the weather was beyond amazing and the girls were so very good. They enjoyed every minute of the game, mostly the fireworks. Annabelle slept most the day Saturday and I was so nervous she wouldn't make the game, but when I woke her at 5:30pm, she woke up happy, seemingly refreshed and we are so happy we made it. The girls deserved a night out and I enjoyed the cold beer and socialization with my little family, and my work family <3
Tuesday, July 15, 2014
Yesterday was another day of long appointments for Annabelle and I. Her appointment was scheduled for only a 30min window that I was willing, yet nervous, to attempt during my lunch break - it ended up involving multiple doctors and quite the conversations about sweet Annabelle. I walked into the appointment with confidence and a nervous stomach - I left yesterday with an even more nervous stomach and much less confidence, more understanding of whats going on but a boat load of more fear... about whats going on.
Annabelle has begun to loose weight again, despite the increase in feeds. Her appetite is nearly gone - she may, *may* eat an ounce or two of foods/fruits/veggies/smoothies/snacks all day total. I just cannot make her eat. I don't know if she's in too much pain to eat, I don't know if the acid is making her tummy hurt, I don't know if the EoE is still so very much out of control that the process of food working down her esophagus is more work than it's worth. Or, maybe she just does not have an appetite at all and therefore she doesn't have a desire to eat. The feeds she is getting do not 100% make up her nutrition needs, she is still responsible for consuming a bit of the calories on her own but she isn't.
This weekend, I decided we would go to the store and local produce stand and I would purchase every single safe food in her diet. We did. I made a buffet for her from one end of the kitchen to the other. Snack plates, bowls, cups to carry, drinks and foods accessible everywhere to pickup and eat as she plays. She wasn't interested a bit. I gave her favorite snacks in a plastic cup to carry with her (gasp, I even permitted her to carry it around the house / yard / living room etc) but it didn't matter, she barely took 5 bites and I ended up picking more crumbs off the floors than what landed in her belly.
Her weights dropping and there just isn't anything we can safely do about it. If we increase her Elecare feeds, we will begin to play with fire, as Annabelle's system crashes hard when she's solely being fed Elecare (we still have no idea what the ingredient in Elecare is that does this to her.. but we've found a sweet spot by offering many foods that seem to balance that level a little better).
One of the doctors largest concerns yesterday was the amount of prednisone she is on and without an end in sight. Annabelle is beginning to show many outward signs of steroid distress.
- She is undoubtedly presenting anger / frustrations from the long-term use of steroids. (I joke and call this baby-roid-rage, but in all seriousness, it's a scary thing watching your frustrated child so very angry and you know it's the heavy doses of drugs that alter her sweet disposition, and there's nothing we can do to change it).
- There are reportable areas of swelling on all her limbs, hands / fingers, feet / ankles, cheeks and face.
- There are skin changes, reddish/purple lines throughout her skin from steroid use.
- Not to mention the amount of restlessness, long nights of non-continuous sleep, and her incredible increase in thirst. Annabelle drinks nearly 3-4 cups of water JUST during the hours of 8p - 5a WHILE being hooked to her feeding pump and being fed. She is constantly thirsty. (But somehow, knock on wood, she's determined to potty train herself, and she's doing pretty good at it!)
- Hair growth is a notable change that I just recently recognized. I remember this past fall, as Annabelle was coming out of her very worst months, we switched her formula to BCAD/Anamix, and suddenly her hair began growing! Her nails started growing and she began to wake up!! I hadn't paid much attention to these things for quite some time, until this weekend when both girls asked me to make their hair fancy. I put curls in Mady's hair and began to play with Annabelle's.... only to find that the hair still on her head, not on her pillow as usual, is so brittle, uneven, the top of her head has hair approx 2in give or take, the bottoms is a bit longer but not much. I kept playing with her hair and then it hit me 'her hair likely hasn't grown at all since the winter when we stopped feeding her BCAD/Anamix. The doctors yesterday checked over her body and also asked about her terribly brittle, breaking/split/paper thin fingernails. I rarely ever clip her nails any more. Like most her life, her nails just don't grow.
If we remove the prednisone from Annabelle's medication cocktail, she will immediately loose her appetite even more so than she already has. Her weight will spiral down. And it's very very likely that her immune system will once again set into an out of control spiral. The plus side is, the testing / lab work we are constantly performing will no longer be blurred by such a heavy drug suppressing her systems. There are too many dangers to keeping a young child on heavy steroids for an extended period of time, don't look them up, it's terrifying. We know we can't keep her on this regime, but we also have no other choice when we don't have a clue what is setting her immune system into a relapse. We cannot afford for the EoE to do anymore damage than it already has, but we can't afford to keeping her on this cycle either bc it's clearly not working any longer. We are quickly loosing our #1 focus and goal with Annabelle: Quality of Life. Right now, we aren't there and she deserves much better than what we're doing.
I am desperately trying to secure an appointment with the EoE Clinic for their specialists to take a look at our latest biopsy's / re-scope and hopefully help us determine a new treatment method that doesn't involve drugs. From there, we can continue to test and draw the labs we need from Annabelle.
Our team of doctors are working diligently right now to move us to a facility, not within the state, but fingers crossed on the east coast of the US - for a peds neurologist that can address their concerns with all Belle's Neurological signs of damage/distress and also components that associate with Immunology that trigger Eosinophilic Disorders.
Yesterday when I picked her up from the nurse, Annabelle had just woken up for the day, it was 4:45p - she then slept all the way home, came home and played for about an hour and then was asleep at 7:45p. The days are beginning to shift. We're watching the calm before the storm begin to show it's ugly face and AK and I are worried to death. We know she will be ok, we've ridden these storms before, but it's the unexpected that we never know how to prepare for. It's the unexpected curve balls she throws, or the painful processes we endure that flood my heart and tummy with fear - starting now.
Hold on tight prayer warriors - we're about to take off once again. I will keep you updated and hopefully will have dates to share very soon for our next upcoming appointments!
Thursday, July 10, 2014
About two weeks ago, Annabelle and her sissy decided that they would like to throw an unwanted and unnecessary curve ball into life. They both ate a penny. Really girls? Really? Nice.
The penny has .. umm..... made it's great escape. Annabelle however, isn't feeling too hot. Like I mentioned before, her energy and appetite is slowly beginning to fade, but her pain is also increasing.
We met with our GI and Nutritionist last week and it was very informative for both the good and bad.
Annabelle has gained all the weight she lost at the last appointment!! This is such exciting news that I cannot put into simple words. We're so very proud of her! :)
That being said though, the weight she's gained can also be explained by the 2x day prednisone she is taking (water weight) and also increased feeds. The loss of appetite has affected her weight over the last week or two, but overall we are still in the positive for as much as she's gained since April. For those numbers, we are grateful. When you see numbers on the scale increasing the way we have, it brings comfort that other systems are also being nourished. If Annabelle still were not gaining weight or continuing to lose, than we would have concerns about the rest of her little systems getting the support/nutrition it needs to thrive - your body puts all else before actually gaining weight, if she's putting on pounds then we know she's actually being nourished as well as we can expect considering the circumstances.
She's grown in height! Not only are the numbers on the scale an improvement, her height has followed!
She's coughing and choking constantly. I can no longer lay her down to sleep without her sounding like she's drowning. There is a good chance that when she passed the penny, it tore her Nissen and opened. This isn't an easy fix and will require a new full surgery, not just a procedure or anything outpatient. We really don't want to go that route again, especially knowing how long it will take her to recover and during that time, she won't be allowed any foods/liquids at ALL. If we all find it necessary to re-do this surgery, we might as well kiss those numbers on the scale goodbye for a while. It's a huge risk, but so is the damage being done by the torn nissen. Our doctors increased her PPI (compounded acid blocker) and we will continue to ensure she's sleeping propped high in the bed. We can no longer bolus feed her as anything faster than an ounce or two at a time will make her choke - therefore, we're back to ONLY using the feeding pump, at extremely slow rates, nearly around the clock to ensure she's meeting all the daily requirements.
A person triumph for Annabelle - her tubey looks WONDERFUL! It's never looked as well as it does right now and we owe every ounce of our thanks to the amazing Benik Belt Tubey Cover that Belle has been wearing non-stop. Champions 4 the Children is an incredible, non-profit organization whom has reached out to sweet Annabelle and wanted to do something to help her, provide her some comfort / relief / more smiles in any way they could. I mentioned that one of the biggest things on our wish list is for a tubey belt to help protect her tubey from injury.. and they delivered :) We had a belt ordered and she's worn it everywhere from naptime, in the pool, playing around the house and jumping on furniture. I am amazed at the difference in healing and protection her g-tube has shown and I couldn't be more grateful and humbly blessed for this gift for Annabelle. I know, without a doubt, Belle is equally happy for her newest tubey accessory.
Monday, June 23, 2014
The last couple weeks have been full of ups and downs for our family. Annabelle is reaching every day to meet new goals with all this new energy her little body has. She tires easily still, but she is improving with every day to keep up with other kids her age. She is running, playing, laughing and learning the world all around her. She amazes me.
The pool is her new favorite place to be. She's becoming a fish and going underwater is her mission, whether that be to jump in and then you catch her once she's gone under, or for her to dunk her head herself and come up laughing. She loves the water. She loves the pool.
As much as she loves the water and pool though, the pool and water is just another aspect of 'Annabelle' that our family has had to learn. Her body temperature has done much better over the last several months, being able to balance itself, but she does still have trouble warming back up once she's been cold.. and vice-versa. That simply means, if the sun is going down and temperature is dropping, our time in the pool must end before the shivering chin begins.. otherwise it will become a battle. If the pool is too cold, Annabelle cannot get in. However - as hot as it's been the last several weeks in VA, this hasn't possed too much of an issue and we've been able to easily alleviate all Annabelle's temperature unbalances. The water is another adventure: kiddos drink water when they're learning to hold their breath from going underwater. If I had my choice, I wouldn't allow Annabelle to constantly go under, but Annabelle has other ideas - and she's stubborn as a mule most times. She is learning very very well how to hold her breath and blow out water every time she surfaces. She's doing an amazing job! If/when she drinks water though, once the water gets into her tummy, it begins to cause her to cough/vomit. But Annabelle cannot vomit, thus resulting into a painful, choughing/retching/spasm of crying until we can hook her extension & a 60cc syringe to drain all the water/liquid off her stomach to provide her relief. We are very clear with Annabelle and remind her each time this happens, that she cannot, CANNOT drink or swallow the water or it will hurt her tummy. She's learned to hold her breath near perfectly in the last couple weeks, so fingers crossed we don't have many more of those instances in the near future.
Her eating is going slow. Most days she eats very, very little, and the food she does eat, provides very little nutritional value. The things she wants to eat most, always happen to be everything that is unsafe in her diet. She asks for chicken almost daily. She asks to eat bread / toast / cereal almost every meal and we have to break her little heart and tell her no.
Her diet right now consists of:
Dehydrated fruits / veggies
We are blessed for all that our diet allows right now. It may seem limited to many, but this is a HUGE diet to most kids with Annabelle's disease. To say we are grateful, is an understatement. That being said, our prayers are focused to maintain this diet and not loose any foods from another failed EoE report. Keeping all these foods in her diet was a plea on our part with our GI, the usual protocol is to remove all foods , treat the Eosinophilic Esophaghitis flare and then begin trialing foods again. We choose to keep our foods and only eliminate portions of her diet and pray it provides the changes we need. Fingers crossed!
How is she feeling?
Annabelle seems to be doing 'alright'. Without a doubt, her quality of life is better than it's ever been. She smiles, laughs, picks on her sister and gives us a run for our money more often than we care to admit. So I assume that means she is feeling better than ever.
Her sleep is extremely erratic. She wakes multiple times a night crying. She wakes in the morning and says her tummy hurts, throat hurts, butt hurts, anything. She cries and cries many times but cannot tell us WHAT hurts. She seems to becoming more uncomfortable in her body again. I could be wrong, and I do hope that I am, but AK and my experience with our daughter is usually gauged pretty clearly. She is drinking a LOT. Her diapers/bowels are well lately but something internally is off.
Saturday afternoon while driving down the road, Annabelle began to cough. The sound was like a dagger cutting into our hearts to AK and I - he looked at me and I didn't look back at him. She coughed again and I finally looked up with tear-filled eyes, she said the terrible words "That sounds like EoE".... I whispered back "I know.." For the last several days, she has woken and spent her mornings coughing and choking. We pray its only a simple cold/virus, but we're nervous. An EoE parent knows the cough like no other - we pray to never have to hear that cough and we can identify it from 1,000 others. It sucks. It's the sound of pain, torture and upcoming heartache, barking from your childs airways. It's the sound that finds me in my nightmares. I hate EoE. I hate Eosinophilic Esophaghitis.
Annabelle's feeds have been delivered lately most as bolus feeds vs feeding pump. This means instead of hooking her tubing up to her feeding pump & IV pole, that we hook a 60cc syringe to her tubing and dump the formula in as fast as it will feed into her belly. (A couple minutes vs hour and half). She has done wonderful with bolus feeds until the last week or two. Lately we haven't been able to deliver more than 2oz of a feed without her retching / trying to vomit. Therefore, she's gone back to the feeding pump for most of her feeds. She isn't happy much at all about this. She hates being hooked up to the pump and IV pole, she's confined and restricted for most hours in the day. I'm not sure why the sudden change of what her tummy can handle vs now, but we are making due with the resources we have and will continue to deliver her feeds in the safest manner we know possible. It unfortunately just comes with the sacrifice of being able to live and play as a 2yo should be able to do :(
Test Results Are In
Lab / Bloodwork & Scan Results
Friday, June 6, 2014
This Wednesday I had a follow-up phone appointment with our doctor again. She wanted to confirm a few things I had shared with her previously, answer some outstanding questions she had.. and most importantly, she wanted to know more about what happened that night Annabelle came into this world. Which drugs exactly were used during labor, why and how long, and mostly how "I" was responding to them.. how did Annabelle thrive in the NICU and what were some of the affects it possibly had on her little body once she was born. I hadn't thought about any of these things for so long. That big event from only 2 1/2 years ago has become a distant memory. Annabelle's birth is a sad, sensitive subject for me and one of which I do not enjoy discussing any more than absolutely necessary. It was a day of full disappointment on every level beside meeting my daughter.. and even meeting Annabelle, was not at all how I planned, dreamed, prayed or imagined. September 20th, 2011 was a very hard day - and we're learning now, that it may have actually been a more defining event to Annabelle's life struggles than we ever thought.
Annabelle's labs came back with just as much concern as her labs notoriously do. However this time, we understood their rhyme and reason a little better.
The most alarming results that we discussed:
- Very high indicators for both Hep A & B
- Lots of chemical build-up with extremely high levels of heavy metals throughout her body
- Indicators for a congested liver (which we know)
- Lots of inflammation within the intestines (minor bleeding throughout both large and small) - we call this a "leaky gut"
- Very high levels of fungus / bacteria within the body
- Dangerously erratic Lymphatic System
- Signs of Hyper-Coagulation
- Sympathetic Nervous System concerns
- And an obviously very stressed liver and thyroid
Just the other day, we were out to eat and I ordered Annabelle chips and guacamole. We eat corn chips and I make quacamole at home all the time. It's nothing new and she's never shown signs of an allergy or anyting before while eating it.
I posed the question and explained the situation to our doctor during the phone call. What she explained was quite easy. "Annabelle can have avocado and all the ingredients. She isn't 'allergic' to them per say, even though it outwardly presented that way. The day prior, Annabelle's meal consisted of very similar ingredients. Because her liver is so very congested, her intestines are inflammed constantly and her immune system is attacking everything it see's coming in ... the small amount of guacamole she ate was apparently just enough to overwhelm that conversion factor in her liver when attempting to convert the foods into fuel. The liver's inability to process the food, activated high IgE's (allergen cells....) and then set the immune system into fight mode, once again. That's why we saw an outward reaction all over her skin - what we didn't see happening inside her little body however, was far worse. It's a tiny example of how unbalanced Annabelle's little body is.
We are still working full steam ahead to figure out what to do. SO many things have been addressed in the last couple weeks. So many discoveries have been made and so many times, my heart has sank over and over and over at the realities of what my daughter is living thru.
I cannot believe her strength and courage every single day. I knew she was a strong child before, but I didn't have any idea just how much fight she has put forth since the moment she was born to still be here, smiling and giving us hell every day. This child is absolutely amazing beyond belief. Her body is doing every single thing it can to drag her down and also trying to sustain another day - while Annabelle herself is doing everything she can to live each minute on this world to it's fullest and loudest, by absorbing everything around her. I cannot, CANNOT believe this child. I cannot believe the doctors and their discoveries in the last couple weeks. I cannot believe our God for what he's done to bring us to this place. I cannot thank anyone enough for the strength you've shared to make sure we are here and where we are today with Annabelle. The realities of what I've learned lately scare me to a nauseas state but the miracles I see before me restore every ounce of fear and doubt I have ever had.
Thank you, every one of you from the bottom of my heart for everything. Keep this child lifted in your everyday prayers, because someone big, with the most power is listening upstairs and these prayers are working!!!
Tuesday, May 27, 2014
- Annabelle is allergic to a billion things, her body's allergic reaction is to set off the auto-immune response.
- Annabelle's GI system doesn't know what to do with any foods or substances not does she know how to gain any nutrients from them, and in result - goes into auto-immune.
- This could explain why each time we have attempted to lower the quantity / density of her calorie packed formula, she rapidly looses weight.
- Annabelle has a rare form of Genetic Celiac Disease. Elecare could potentially have traces of ingredients that is setting off a response from Celiac.
- Which is odd considering Celiac Disease is what our first GI nearly bet money Annabelle had when she was 18m old. Our first scope was essentially to CONFIRM the Celiac diagnosis and begin treatment. When our doctor came from the OR, he appeared shocked and shook his head saying "it's not celiac, I'm sorry, it's going to be eoe". I will remember those words coming from that doctor for as long as I live.
- There are many deformations that the doctor recognized on Annabelle that clued her towards Celiac. What I didn't know however, is just how painfully difficult it is to get a Celiac diagnosis.
Tuesday, May 20, 2014
Many parents, fighters and supporters around the country are celebrating and using this week to actively education and spread awareness for an epidemic that has plaqued our children and loved ones. I am doing my part in a much quieter way this week, we're wearing our shirts and bracelets, but life is just moving a bit too fast in our family to devote the attention this disorder deserves this week. I wish we could be doing more, but I would like to think that Annabelle's Blog and stories are touching hundreds daily on how serious Eosinophil Associated Disorders are to those affected and their families. I would like to believe that instead of focusing only a week during the year, that our family is spreading awareness all the time to you.
If you do want to learn more or how to donate and support all the children and families that are fighting this battle, please visit the sites below.
Many videos, http://www.youtube.com/results?search_query=eosinophil+awareness
Our babies need a cure.
- We need funding for research.
- We need help.
- We need a bigger support and resource team to help navigate life with this labeled burden (heavy word? ... I tried to think of another, but burden was appropriate. especially with how I am feeling about it today.)
- We need a better way to diagnosis and manage EoE Relapses.
- We need educated healhcare providers that truly understand Eosinophil Associated Disorders
- We need education systems that are equip to provide a fair and valuable education to our sick children.
- We really need unlimited supply of wine for all the momma's and daddy's that spend every waking minute with heavy hearts while raising our children who suffer this unfair disorder. (I don't know this wish will make it to the top of priorities for donations and funding but it's worth a shot).
Our Governor, Terry McAuliffe had this statement released Sunday.
Today on our schedule, living life with Eosinophilic Esophaghitis, we are visiting with a highly respected, very difficult to schedule with, Dr. House in the Mystery Medical World.
Annabelle has been thru the ringer of tests, labs, surgeries, procedures, more tests and more labs - most of which always indicate an abnormality of some sort. None of which have given our doctors the information they need to make an official diagnosis for our baby. We are moving out of the box today and seeing a doctor that practices Natural Medicine. She promises to look at our little girl from a global level. View Annabelle's system as a whole and try to help us understand and decipher how and why her body is operating, fighting and failing in the way it is. We are eagerly anticipating several hours this afternoon to nagivigate piles, and I truly means MOUNTAINS of paperwork and medical records to find some sort of trend to explain Annabelle a little better. I am praying with everything that today will at least, if nothing else, give us a better path to walk down towards finding a diagnosis for Annabelle. I hope today provides us with a direction - with a direction, I can find the best doctors in the world. I just need to know where we are going and I will run. As fast as you can imagine with my baby cub under my arm. I will run.