Thursday, August 14, 2014

After speaking with our GI, she's agreed we need to head back to the O.R. and see what's going on. We need to scope and biopsy more things and gain an updated Eosinophil count of her esophagus. Let's all begin to pray now that our counts are at zero.

The problem though is a catch 22.. Annabelle needs to be cleared for surgery and anesthesia - her cough though is horrible. It's getting progressively worse and clearly more uncomfortable for belle the longer it persists. 

Because she cannot be vaccinated, our doctors have concerns about Pertussis (whooping cough). We're scheduled to be tested soon. 

Her bowels are another concern. Because of the tube feedings and her diet, Annabelle typically has a BM daily, if not more. Over the last two weeks however, they're becoming more around 4-5 days apart and causing multiple problems, not to mention terrible pain to Annabelle. Eosinophil associated disorders do not only attack the esophagus, they can also attack and damage the stomach, intestines and colon. While I'm hopeful this is simply a change in her GI system and possibly just a side effect from all her medications, it may be necessary to scope and assess the lower GI as well :/ I'm praying with everything that these issues work our bc prepping and the procedure for an upper AND lower scope and biopsy is terrible on Annabelle. My anxiety begins to rise already :(

Otherwise, beside the coughing and no pooping, belle is slow and still but in high spirits. She played outside a bit last night,  it was good to see her acting silly with her sissy on their little bikes. The night before, she wouldn't leave my lap for hours and just wanted to look thru photo books over and over and over and over. I had laundry, floors and dishes to do... Instead, I found myself looking at our family shutterfly books, over and over and over! Lol 

If we can make it to the weekend, AK and I have special plans for the girls. Any time we plan and/or invest to do something, we end up in the hospital - this week isn't a good start but we're hopeful we make it to the weekend with high spirits and can enjoy some family time before school begins for Mady :)

Monday, August 11, 2014

When a simple cough knock you on your butt...

It’s time to consult the specialist again.. Something isn’t right – our nurse, AK and I are all becoming genuinely worried. About two weeks ago, Annabelle began showing signs of a cold/cough. It’s onset was fast but we prayed it would be short-lived. It’s clear your feisty two-year old isn’t feeling well when you take her to a water-slide, pool party and she refuses to get out of your lap the entire time. She never got in the water.. we did however, manage to pull a few smiles from her with the help of bubbles (guaranteed trick, never fails). She was slowing down though.. she wouldn’t eat much and began to need pump feeds constantly.

After a few days it began to get worse and to the point our nurse no longer felt comfortable even taking her much out of the house. She now barely has energy to play outside in the afternoons – her mornings are the only time of day that she has much energy, and even then, she depletes quickly. Her coughing has become a high-pitch chocking / wheezing / gasping. The nights are worse, but not substantially that I would relate it to anything like croup. Her eating habits haven’t gotten significantly worse, but they’re still not where they need to be. She’s undoubtedly lost weight. The high-pitch cough is what scares me the most. Coughing and retching (gagging) is what terrifies me. When she begins to vomit / needs to empty her stomach via tube, that is when we begin playing with fire. When we have to drain her stomachs contents, she loses her counted nutrients that she needs to stay balanced to ensure her ammonia levels don’t spike and begin causing worlds of problems. That’s where we are now. 

We still haven’t managed to get the last EoE relapse under control, even with diet eliminations and protection while playing outside. Annabelle wears a mask most all the time while she is outside. She cannot dare go out if anyone is/has recently mowed the grass. We don’t even cook foods that could set off her EoE inside our home anymore. Our entire family has lost meal items in hopes we can bring Annabelle’s EoE under control by eating and being around only the safest foods possible for her. It isn’t working. We’ve ramped up the medication without luck and are back to putting her in a bubble 99% of the days. Again, no luck. 

Yardsale & Lemonade Stand this weekend to raise money for Annabelle 8) 
These precious little girls did a great time advertising, marketing, bribing and pouring lemonade for a great cause. I am so humbly proud of these two young ladies, that are mature well beyond their years and worked all day to support other kids that aren't quite as blessed as you and I.
Rock on beautiful girls! You're doing bigger things that you could ever imagine!

So we hold our breath and pray.. .. .. .. and drink wine; because fruit is good for you ;)

This last spell of whatever has set her frail immune system into attack is truly doing her in. I have no idea how to stop it and so I’ve called and am hopeful to hear from our specialist soon. We do have an appointment on the books for next week to do more labwork and follow-up with some concerns, but I don’t think we can wait that long. I have no idea what to expect when I hear from the doctor today – my wish for Annabelle is for the least amount of pain as possible, but fast relief from this horrid, horrid disease that’s attacking her little body. I don’t know what other treatment options are even out there for kids like Belle. We get lost in this huge world of thousands of doctors, millions of medications and hundreds of tests… but no effective treatment options. Eosinophilic Esophaghitis is not a one size fits all treatment type of disease… Annabelle’s case involves mystery components that make diagnosis, treatment and management nearly impossible. I just pray, with everything that I have, that one day soon we will have the answers we need for our baby girl. Annabelle deserves a break in this fight, and deserves to know what its like to live and love life without pain. God hear our prayers for this sweet little girl!

Friday, August 1, 2014

Moving along

Moving along
No big updates to share, just the usual (which is oh so very much welcomed!!!).

Annabelle is pretty tired but we're using it to our advantage. She's too exhausted to put up much of a fight about most things, and I enjoy it.
Me: "Annabelle, mommy is sleepy, do you want to come cuddle with me?"
Belle: "No - I want to go play with my puzzles..."
goes to play with puzzles.
...3 minutes later.
Belle: "Mommy, can I cuddle with you? I want to watch Mickey Mouse"

While she isn't doing back handsprings around the house anymore, she is still full of her silly self and conversations. She loves singing lately and makes up new songs everyday. She loves Katy Perry Firework & Roar. I bought her a new 101 Dalmatian puppy and it's apparently the best thing since buying her Lambie. She's obsessed with the water, any way she can get it. She loves going swimming and is completely fearless. She loves bathtime, washing her hands, playing with the water hose, or just sitting outside splashing in a bowl of water. She loves water. She also loves giving out kisses and hugs lately. When she is wild and on baby roid-rage, the hugs are few and far between.. but when she is sleepy and worn out like right now, she becomes quite cuddly and reminds you multiple times x day how much she loves you.

She doesn't stop talking. Ever. She's learned to communicate and her speech is absolutely EXPLODING. She tells you stories, counts on her fingers the things she has to say, sings, chants, marches to a beat and hums. She loves to talk. . . . . too darn much.

AK and I left town this past weekend, and on the first day of my mom watching our girls, Annabelle decided to make that the time to begin the weekend of heart attacks for nenaw. (grandma). Mom called me worried, "She hasn't eaten anything. She's had all of her medications and isn't touching anything. I drove her a few minutes down the road in YOUR car and her carseat. She never got out the car and all I did was put some tomatoes in the back. I turned around and she's covered in hives on her face, arms, chest, legs etc. What is this from?!"
It became the problem solving that never revealed itself. We have no clue what initiated her immune system to set off. It could be absolutely anything - it could be something airborne, something she touched, ate or smelled, or could also be stress. Yes, stress itself can do the exact same harm and damage as her eating a handful of peanuts. That's the hell of having an auto-immune disorder. Anything can set it off, and it's root cause may never be determined.

 We have no idea what happened Saturday morning. She was dosed with the safest form of benedryl (bc the standard store-bought kind is unsafe for Belle), took a nap and woke without hives. The rest of the weekend was less eventful and at 1am Tuesday morning, our flight landed and we were finally able to see our little girls for the first time in 4 days - the longest we've EVER gone without seeing our girls!

Belle was so happy to see us in the morning, and we were so heartbroken to have to give her kisses and immediately say goodbye as we headed to work. The week has been well - AK and I are dragging from all the travel, but the girls are good. Annabelle is dragging as much as we are so for that, I am actually counting our luck.

Next week will be another eventful week, we have more tests and labs to perform. Hopefully we will have made contact with a specialist to see Belle by then and get some of the work started that needs to begin to get her there. Traveling out of state and insurance coverages are not an easy task to accomplish - they're a nightmare that feels as if the system is built AGAINST traveling to seek better medical care. It will be fun, Im certain.

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!


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.