Friday, July 25, 2014

Gtube Replacement

Annabelle's button has needed to be changed for quite some time. The issue is that I hate to change her tube while she's battling granulation tissue as I can only imagine the process would be excruciating. Since we've been using her tubey belt, she has kept her tubey from injury and any issues. I am so proud of her, and it's such a relief to see her able to play and climb without the fear that she's constantly going to hurt herself. When granulation tissue begins, it's an uphill nightmare for several days / weeks until we can regain control and help ease her pain. Gosh I hate it so much for her.. but fortunately, she's been doing well and with a couple weeks wearing a healthy tubey, AK and I decided last night that it would be good timing to go ahead and change hers out.

I admit, I was also secretly praying and wishing for our new tube to arrive in our latest shipment anyway, and our prayers were answered - it did! Annabelle's new tube is different from the tube she's been wearing since having it placed. She currently wears a Mic-key Gtube. This new one is called a Mic-key, MiniOne Gtube. It has a much lower profile, therefore making it less susceptible to being hit / snagged / pulled / injured. The MiniOne is also much smaller than the standard Mic-Key and I begged our insurance company for months to please, please approve us to have one! I wanted all the tubey injury to end for Annabelle and they agreed :) Yay insurance! FOR ONCE!!!


(Don't get me wrong. There isn't anything at all wrong with the standard tube.. it would be fine for someone like you or I to wear, but it's very difficult for a little body that's full of sillyness and adventure to keep it protected. Annabelle doesn't hesitate to attempt back flips from her bed or slide down playgrounds on her tummy... you would think she would get used to the tube by now, and she has! but in a terrible terrible way that she refuses to protect it until it's too late and already in terrible pain. She's a hardheaded wild child - we needed something much smaller until the toddler can understand our reasoning when she's playing rough.)


Annabelle was put to bed at usual bedtime but woke up again nearly an hour later crying that her tummy hurts, she needed to make bubbles and her tubey was hurting her. That's when I decided 'yup , were changing that tube out.. something hasn't been right for a couple weeks now and it's time', AK helped Annabelle make bubbles while I gathered all the supplies needed to change out the tube. While Belle was making bubbles, she jumped and knocked over the full 60cc syringe of gastric juices, old formula and stomach bile - welcome to the fresh, eye watering scent of my home! (gag). I continued to get things together and cleanup Annabelle while AK began stripping her bed and cleaning the potent mess.





Finally it was time. With hands thoroughly washed (pep talk to make them stop shaking), distracted Annabelle watching a little video on my phone, I withdrew the fluid from her tube and exhaled - AK stood next to me holding the new tube ready for insertion. I withdrew the tube.... and it stopped. What? Why? No...... I tugged a little more and Annabelle gasped so loud as if the air was completely sucked out of her little body - I ignored her reaction and focused hard on her stomach, kneeling down closely to take a look and continued to pull.. it was stuck. I swear, it was stuck! I pulled some more and the screaming began. My heart sank deep into my stomach and I did what I NEVER EVER do - I looked at AK with teary eyes and said "I can't do it. Something isn't right - you have to do it". We switched places and I assumed the role that I am best at, and have mastered over the years with Annabelle 'providing comfort, honest answers and distractions when medically she is being subjected to things no parent wishes their child ever were. I began to sing to her our song and held her little cheek into the palm of my hand so she would make eye contact with me and not on what daddy was doing to her. It barely worked.. I spoke calmly and continued checking on the progress that AK was making.... he was wiggling and trying to pull the tube out the best he could but again, it was stuck! Finally something began to emerge - it was black.. this thick black stuff began to pear from her stoma (hole in her stomach) and I gasped. I didn't understand what that could have been.. I hated myself so much for not being able to do this at home on my own. I can place NG tube's with my eyes closed and 150% confidence - but why can't I replace a gtube?! What is wrong with my kids stomach that makes this an excruciating process??

I grabbed the tube from AK and wanted my own assessment of where we were - it was now stuck inside and out.. you couldn't push it back in and we couldn't pull it out. My fear was that something was caught inside her tummy and that is what caused the problem - each time you would pull on the tube to remove it, Annabelle would scream the most horrendous painful scream and you knew she was undoubtedly in so much pain. Finally AK pulled so hard I just knew he was going to rip her poor stomach. When he did, the tube finally came out with Annabelle's finally scream and behind it was pouring stomach juices, lots of chunky gross stuff, etc. It began to cover Annabelle, the towel she was on and soaking my bathroom vanity/sink.. I wiped as much of the gross stuff off her stomach around the stoma as I could and then began to try to place the new tube in the hole - immediately I discovered the problem. The stoma itself is so much smaller than the large portion of the tube that inflates and needs to be inserted.. getting over that place on her stomach requires stretching of her skin and tissue to make the insertion possible. I used as much lubrication as I possibly could and it was less than helpful.

The screaming and pleading from Annabelle began again "Mommy, mommy please stop! You hurting me! PLEASE mommy! Stop! THAT HURTSSS" finally, she could hardly speak anymore and I knew she was wearing down. I asked AK to switch with me again and he did - we looked at one another and agreed quickly - 'we gotta get that thing in there fast... and it's going to frickin suck.. now, go'. I held her arms and torso - I looked deep into my baby girls glossy eyes that looked so confused and begging with just a stare for all this to end and he did it. AK got the tube in and we all cheered for daddy for making it happen. I managed to inflate the balloon after a few minutes of allowing Belle to catch her breath and before checking placement, I picked her up.

I think I needed Annabelle more than Annabelle needed me.. well, that may actually not have been the case last night.
I scooped her into my arms, slimy, sweaty, covered in tears and gastric fluid, rotten formula and blood - her little body was shaking so hard that mine began to do the same with hers.. I walked oh so carefully to my bed when I laid her in my arms and a pillow so very still and just talked to her.. I told her how sorry I was, how proud we are for her being brave and how beautiful her new tubey looked in her tummy. She was sore I could tell, but she was also very tired. After a few minutes, AK came to the bed and we connected her extension to make sure we had the placement correct inside her tummy and immediately we could tell we did. I removed a lot of the fluid off her stomach bc I feared she would need to soon vomit and I didn't want any unnecessary matter splashing around in her stomach while she settled down. Mady joined us and sat on the bed with me and Annabelle, she kissed her sissy's forehead and told her how beautiful and brave she is for such a little girl. My babies can be the sweetest things during the times when they need each others support the most. It's amazing to watch.

Soon after things were settled, I carried Annabelle to her room and laid down in the bed with her to snuggle up so she could fall asleep. She was exhausted. Afterwards, we cleaned the mascare of the bathrooms mess from the last hour. AK and I inspected the original tube we had just removed and it was disgusting. I have never seen anything like that before and I was completely ill by the looks of what had been inside my daughter's stomach. The balloon was filled with chunky, floating black stuff and it smelled so horrid you couldn't help but gag at getting near it. That just cannot be normal. The last tubes weve replaced were discolored, her NG Tubes would become discolored - but this was beyond disgusting! I shook my head and tossed it to the side, kept cleaning and disinfected the entire bathroom.. threw the towels and anything she was near into the washing machine and climbed into the scalding hot shower myself to scrub my hands for what they had just done to my poor daughter once again.



I love the shower.. it's the only place a mommy can cry and let tears fall and no one knows. I hate days like these, they crush me.. I know they'll crush me.. I would do anything in this world to never have to look at these days again, but I can't. My hands are tied and we HAVE to do these things, regardless the pain it causes .. we don't get a choice - our choice is to care for our little girl and give her the best life we possibly can, and unfortunately, that comes with very very ugly and dark days like these. And at the end of them, there's nothing better than a glass of wine and hot shower to wash the heartache away. :(


Annabelle did surprisingly well during the night. She was hooked to her pumps all evening and didn't have any complaints until this morning that her tubey was sore. I haven't seen any granulation tissue appear yet, but without a doubt - it will surface. Any time her tubey is put thru something as invasive as what happened last night, granulation tissue is guaranteed to rear it's ugly face. We're holding our breath now for that next hurdle.


Sunday, July 20, 2014

1st stop, hospital for xrays - 2nd stop, ball game!

Annabelle's appetite is nearly obsolete and our doctors are very anxious to rearrange her medications so we can begin a few tests that will hopefully lead us to a diagnosis. I made contact with our GI last week and she suggested we begin a new drug now to stimulate Annabelle's appetite and see if that can curb a few concerns. She still however did not feel comfortable allowing us to come off prednisone and strongly urged me to weigh the immediate consequences if we made that choice. Based on Annabelle's last endoscopy and Eosinophil count, her numbers being in the upper 50s are extremely high, it's doubtful that the Eosinophilic Esophaghitis and her Eosinophil counts are in remission at this point, especially considering we don't even know what set it off to begin with. (Another theory that I share with a few of our others doctors, is that we don't believe the Eosinophils are only located within her esophagus, we fear they are spread throughout her body but we're only looking/testing/seeing them in this one place we scope). For the safety of Annabelle, she needs to remain on the steroids, and I do agree, but the side effects of doing so weigh heavily at it's dangers. Decisions, decisions.

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?
Me: No.
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.


Belle did alright for the first few minutes. Then she recognized the table/xray machines. She lost it. My heart sank faster than it has in a long time at the pure fear I could see on her face. I don't know what hurt me most, the reality of our life and how often I have to hold her down for procedures, or the raw fear Annabelle is developing over every aspect of the medical world. The last three times we had xrays, Annabelle was in extreme pain and they were indeed horrible for her.. she wasn't in extreme pain this time, however she can only relate her last experience to those machines - and her memory of them are directly related to the acute pain she was in at the time.


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

Anticipating The Storm



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.

Her walk / run is not normal. If you watch her run, your eyes will cross at how funny it looks. She's becoming more and more unstable and clumsy when while walking. She's fallen down the stairs more times than I can count in the last month. She trips constantly over nothing on the floor, she has a hard time standing back up and she is tiring more and more frequently. Her disposition is so amazing however, that if you weren't looking for these things, you wouldn't recognize them. Her attitude and confidence is thru the roof - when she falls, she jumps right back up, when she slips down a flight of steps, she shakes it off and says "Silly Annabelle, I falled". But it's not ok. It's getting worse and more pronounced, and unfortunately, she's really starting to get hurt from all these falls. She has bumps and bruises all over her body, busted little lips and goose-eggs on her noggin all the time. CPS would love to visit our house, I just know it! (freaking terrifying).


The only highlight right now, is that her energy levels are beginning to deplete again. This isn't a great thing by any means, but I do like seeing her rest more frequently instead of pushing thru to a point when she can hardly stand because she is so tired. She asks to take a nap in my bed all the time, she pleads that we sit down and cuddle her more often than she asks we play games on the floor. She doesn't like walking from the car to the house/store, she cries to be carried and wants to be held the entire time. (Mind you - this child is the queen of independence and doesn't want an adult to get in her way for anything.. her asking to be held is anything but laziness / milking attention, this is Annabelle's way of truly expressing the fact that she's tired. And she must be! She didn't sleep during the night bc she was all jacked up with roid-rage!)

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!

xoxo

Thursday, July 10, 2014

The Good & Bad of GI & Nutritionist Follow-up



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.

The Good

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!



The Bad

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.



Tubey Update!!

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

Test Results Are In & Updates

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:
  • Fruits
  • Veggies
  • Popcorn chips
  • Dehydrated fruits / veggies
  • Potato
  • Tomato soup
  • Grits
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 

As I've shared before in previous posts, we have met and are working with a wonderful - highly skilled, knowledgeable, passionate and honest doctor who was willing to take on Annabelle's case at the request of her current doctors. Words cannot explain the relief I feel to have questions answered and my daughters care being taken seriously and examined by someone who genuinely wants to help a little girl that deserves the best chance in this world. Our initial meeting involved scans and several series of labs. Below I am sharing a high level of the clinical findings and what they mean in Annabelle's little body. Keeping in mind, this is not a diagnosis, these are only the findings of what the scans and labwork are reporting. Our doctors are commited to finding the root cause(s) and best treatment plans for Annabelle and determine what our steps will be next, given the information we have below and Belle's complex history so far. 

Preliminary Scan Readings Only (Below is a compiled list of the largest stressors in Annabelle's body at the time of the scan)
Thyroid
Highest stressed organ, treated at birth. Suspectly caused by a potential autoimmune response in her mother, as well as deficiency in core nutrition for thyroid function. Testing of mother is required for thyroid function and possible autoimmune (T2 immune) function.
Arteries / Veins
The lack of antioxidants leads to foreign protein and too much hydrogen peroxide in the body.
Pituitary
Auto immune activity is impacted by the Hypothalamus/Pituitary/ Adrenal Axis. Lack of core nutrition also impacts auto immune activity. Dietary changes are requested during and after treatment.
Large Intestine
Leaky gut was noted in the DBCA sample and identified as a stressed organ. When digestion is interrupted, food leaves the stomach in an undigested state.
Thymus
Although the thymus is important for children, it is also an organ for both the T1 & T2 immune response. Stress indicates more than childhood growing and possible autoimmune response activity.
Skin
Skin is the third kidney, as well as directly impacted by the large intestine. Hydration and urine pH (waiting for results) is suspected to be acidic with a normal consequence of uric acid...inflammation in the large intestine can also cause skin issues.
Pancreas
Pancreas can be stressed when the pathway of digestion is interrupted. By not activating the enzymes in the saliva for chewing food, the pancreas can be stressed in the ability to digest food and provide insulin for sugar metabolism. Stomach tube is directly impacting this pathway.


Lab / Bloodwork & Scan Results 
Skin
Sensitive skin and skin ring are impacted by kidney (hydration), acidity and health/absorbability of large intestine. Chemical build up causes the liver not to filter properly.
Leaky Gut
Mal-absorption is noted, also supported by periods of lethargy, can be caused by poor nutritional usage of Magnesium. Yeast buds were noted in most of the DBCA smear.

Immune System Inflammation

Immune response from spleen, lymph, liver & thymus. Several organs indicate a stressed system and weak functioning of the body’s immune system.

Endocrine / Thyroid Ovalycytes

Hypo functioning of the system is noted. The endocrine sign indicates the Hypothalamus/Pituitary/Adrenal Axis is involved. Under functioning thyroid was observed along with Ovalocyte that can indicate poor hormone function.

Liver

Congestion in the filtration functioning of the liver, the scan indicates a potential exposure/infection (suspect sub clinical) to Hepatitis A & B as well as many medications that are suspected as being administered while in hospital before/after birth. The body’s indication of these prescriptions still impacting her body indicates an under functioning liver.

Chemical Build-up

A build up of chemicals was noted in most blots, as well as stressors noted in the scan. Chemical build up impacts all systems functioning, including mal-absorption.

Sodium

A potential sodium deficiency sign was noted in a blot, supported by scan of the coccyx being stressed (the point sodium is stored in the body), this is very important for many functions including thyroid, hydration and digestion.

Immature White Blood Cells

Based upon several other signs, an imbalanced T1 & T2 immune response, leaning toward T2 (allergies, inflammation, potential for autoimmune response function) is noted.

Anisocytosis Ovalcytes

Missing core B vitamin absorption for evenly sized and shaped blood cells. (B9, B12 & Iron)

Mild Dacrocyte & Bacterial Infection

Bacteria (mostly rod forms) within the blood cell were noted but not counted. Several forms of white blood cells were identified.

Undigested Food

Poor absorption of food and indications of leaky gut were seen as suspected undigested food particles were seen in smear.

Uric Acid

Uric acid crystals were seen in smear which indicates an insufficient enzyme activity for food, as well as indicating an acidic state and lack of HCl from insufficient sodium/salt in diet.


Magnesium at high doses can create an excess in the body which commonly causes lethargy in the muscles and should cause very loose stools. Annabelle was exposed to a birth trauma by a high dose of magnesium, which I believe caused a nutritional “allergy” of magnesium. This early exposure to magnesium in excess has caused the body’s programming on how to use magnesium correctly to be disrupted. This reaction can be very common with people that have been exposed to heavy metals.


Upcoming On Our Schedules

Our follow-up steps are to meet with our doctors and determine the best treatment plan for Annabelle. We have adjusted her diet and are adding several necessary vitamins / medications that are necessary. I (her mommy), am scheduled to have several labs and testing performed on myself to alleviate additional testing on Annabelle. I have asked to have AK and myself tested for anything our doctors feel may be beneficial to helping us find answers. I would prefer to not subject Annabelle to more and more testing / needles / pricks / hospital stays / appointments than she absolutely needs. The ability to have tests performed on anyone beside Annabelle, I know is not always possible, but if that can avoid one more painful / traumatic procedure for her - than it's priceless.

Our next follow-up appointment is scheduled for this week. We will visit our GI and discuss both these results, tests moving forward and also follow-up from Annabelle's last Upper Endoscopy / Biopsy's. We unfortunately suspect possible EoE activity, and I am praying our doctor this week can visibly see signs to assure us Annabelle is better and not worse than she was in March/April.

Prayers for this tough little girl are always welcomed and appreciated. With every bite of a meal, run across the lawn, belly laugh and daydream for your family/children, please keep amazing little ones like Annabelle in your thoughts as well and pray for all the same joys in life for these children that they too may enjoy them one day.

Friday, June 6, 2014

Amazing Discoveries

I was skeptical at first. Asking a natural medicine doctor what is wrong with your baby - when you have a flood of highly recognized specialists at your finger-tips, was a bit disconcerning. Our last appointment was amazingly informative but I still left with a few doubts about the logic behind presumptions and fear about our future.

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
The conclusion that was made based on Annabelle's history, her books upon books upon books of abnormal labwork and our most current labs/disposition is that at one point she's undergone a significant trauma to her body's function that has in result triggered her body into a 2 1/2yr immune stressed situation and is unable to fix itself. As result, her body has only continued to act in the reponding way of her immune system constantly fighting which has slowly, and now rapidly, destroyed multi-systems in the process. The liver is acting like it's previously had an auto-immune response from the birth trama of being flooded with high amounts of magnesium. When the liver cannot function properly, (we know whats happened already to Annabelle... she's flooded with ammonia) but what we didn't know were the other things that were happening while her liver doesn't function. It doesn't take the food Annabelle eats and turn it into fuel - which then doesn't allow the food/fuel to turn into amnio acids that are essential for the body to function and heal itself. Without this process, the entire body is weak and slowly dying because it's never able to get what it's needing to thrive.... we're literally just buying time day after day and feeding Annabelle just enough nutritional formula that she keeps weight on her body and looks healthy, but not gaining an ounce more. Because her body has no clue HOW to get any nutrients / fuel from food. Her body doesn't know how to repair itself from whatever trauma or absense of development has happened. Her body is artifically surviving and not by her own effort and work, but by feeding her the nutrients she needs, enternally by tubes and medications, to keep her alive and walking so that on the outside she looks well.....


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.



 This time however, after only a short few minutes enjoying her dinner of chips & guac, we wiped her face to discover she was in the midst of an allergic reaction. Her chin, cheeks, lips, fingers and hands were red, developing blisters and swelling. My heart sank with dispair at the same time it began beating thru my chest of panic. "How is this happening? She's had it before? Was it cross-contaminated? WHY DOES MY CHILD HAVE TO SUFFER, LIVING THIS KIND OF LIFE!!???? Is absolutely nothing in this world safe to her?" 



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

We're onto something, finally.


We learned so much about Annabelle Tuesday. My expectations were low, my wishes were set high but the information we received was invaluable. Our visit this week brought a huge new perspective about our daughter and is allowing us to now look at her life thru a completely new set of eyes.

Without sharing too many details, because so many tests, presumptions, and medical conversations are still taking place - I did want to share our initial impressions and where we are moving. 



Before Annabelle was born, my body went thru hell - we didn't expect to conceive or fully carry Annabelle and we really didn't have much explanation to what was happening with me. Mady was born healthy, full term and without any issues. Annabelle came after my body ran a marathon that depleted me of the best nutrients and support to carry a healthy child. 

I struggled to keep the pregnancy, and I mean I STRUGGLED! There were multiple Hospitalizations, several drugs including reglan, zofran, phenergan, multiple series of rhogam because I kept bleeding without explanation and finally towards the end, even more rounds of medications to stop labor on different occassions until we couldn't any longer. I received steroids and they pushed Magnesium as hard as they could for 11hr until Annabelle was finally born by emergency csection at only 33 weeks. I was sick the entire pregnancy, not typical morning sickness, I was diagnosed with Hyperemesis Gravidarum. I lost weight so rapidly that my own health deteriorated. It wasn't until the final cocktail of drugs that I was able to slow down on dropping weight and I finally gained a total of 6lb... And then have birth to a 5lb baby. 

Annabelle struggled just as much during the pregnancy. She tested positive during early genetic testing for spina bifida.. A 20wk Amniocentesis discredited the spina bifida threat but continued to come back high for genetic disorders but non specific to which. 
She failed all her stress tests. We visited the perinatologist multiple times a week until labor and delivery for the safety of Annabelle was just inevitable. 

During the gestational time Annabelle was born, was part of the most critical period for her gastrointestinal system. She needed to cook in utero longer, she needed the extra time to build a solid strong GI System, but instead, we subjected her to floods upon floods of drugs and then into the big cold world. From that moment, she was on her own to finish developing and thrive. 

Quickly once she was born, Annabelle was placed on Elecare. This formula in particular requires basically zero effort of the GI system to get the nutrients. All her body needs to do with elecare is absorb it. Our bodies are so much more responsible for finding the nutrients and things we need to survive. We break down red meats to get iron, we break down dairy to get vitamins etc. Annabelle's body was never taught to break down anything... All we taught her to do was absorb and not work, any liquid we out into her tummy. 

Now imagine a life and you've never eaten red meat. What happens the moment you eat your first steak? Your body freaks out and you're terribly I'll. you and I know there are plenty nutrients to gain and iron to absorb from red meat, but your body doesn't see it that way - your body rejects it and wants it OUT! It hasn't been trained on what the benefit of this new food is and what to get from it.

Moving forward. Annabelle didn't work an ounce for the first 18m of her life... In fact, she's only spent about 5 months in her 2 1/2yr NOT on elecare. We've never trained her body how to work and get the things she needs to survive. 
So keep that thought in mind....


We know, and confirmed without a doubt again, she has an auto-immune disorder. What we still do not know however - is just what exactly continues to set her into a full auto-immune relapse and make her body fight and attack itself. We used to think it was food.. Now we believe it to be airborne based on where the highest qty of Eosinophils were last found. But we still have no clue what exactly is doing all this. And until we know, we cannot protect her. And if we can't control the disease and protect Annabelle from it's threats - well..... We count Annabelle's best days and just be grateful for those. We all know this isn't an option and this is the point in every conversation where mama bear puts back on her boxing gloves and starts fighting ferociously again. I wear hives all over my body just thinking about the fight ahead... like right now, here they come again:

A couple considerations that are on the table:

  • 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. 

Annabelle's tests came back alarming abnormal. In many dangerous category's.. primarily though in the liver, kidney, thyroid, endocrine and of course GI/nutritional areas (vitamins etc).

There are a few immediate changes we are doing now for Annabelle until more tests come back. I have been in close touch with all the doctors and have been absolutely floored and blessed to see how much they are all in constant contact with one another about my little girl. She's quite the hot topic of conversation around several offices and hospital and I am so grateful she's getting the attention and brain-power of professionals that she deserves. 



 
On a personal note: 



Our Memorial Day weekend was spent surrounded with family and friends and we thoroughly enjoyed all the quite time. I hope you were able to do the same. I am finding more and more opportunities to just sick back and soak in all the amazing things my children are doing, saying, playing and learning. I cannot say loud enough just how awesome these girls are!!  Mady graduated preschool Friday, as soon as her name was called on stage, Annabelle yelled "my sister! My sister!!!" And she ran down the center for the church sanctuary with her feeding backpack on to give her sissy a hug. We spent time playing in the pool, which has become Annabelle's new favorite past time. A wish she pleads for all the time... One I can't always accommodate and therefor would be lying if I said I didn't let the girls just pretend to swim and wear their bathing suits in the tub, more often than I care to admit ;)

Belle is talking up a storm. Her imagination is far bigger and more amazing than I ever believed possible for a child! I sometimes wonder if she's too pumped on drugs and is delusional lol. She loves to play pretend and does so all the time. I need to record her soon so you can hear her sweet voice and watch this amazing girl learn and live every bit of life to it's fullest.