Tuesday, March 9, 2010

Cincinnati Part I

Well, a month ago we were in Cincinnati for Fisher's EE treatment, and I am just now getting these pictures up. Thanks for your patience, and without further adieu...

This is how the cool kids get around at the hospital.

Waiting to be wheeled back for his biopsy

Recovery room...lots of yummy popsicles!

Skin prick testing...40 mins of blood, sweat, and lots of tears! Poor guy reacted to over 50 things. These are the itchy hives that pop up when there is a reaction.

These are food patches on Fisher's back. They have to stay on for 72 hours to see if he has a delayed reaction to a particular food. No reactions!

The Ronald McDonald House, where we got to stay.

There was a train table right outside our room that the boys played with every day.

We were so blessed to have some friends that live near Cincinnati - Katherine, David, and their two boys Carson and Tucker. They were a lifesaver during our time in Cinci, and the boys had such a great time playing together.

Pictures from Cincinnati - Part II

I will never forget what a good friend told me as we prepared to
back up our entire family for this trip..."This will be such a great
opportunity for London, to see that this is what a family does to
support each other. You do it together." Thanks for the reminder,
Elaine. I know that these boys already had such a strong bond
before we went to Cinci...now, difficult as it is to imagine, their
bond is stronger. They are the very best of friends.

The "Wall of Love," created by all of Fisher and London's
friends from Rainbow School. This was so encouraging to
us during such a tough week.

This was the day after we got home...tired from such a busy
week. He hasn't fallen asleep in the middle of his toys since
he was a baby.

Wednesday, March 3, 2010

Watch This Video!

So, I've been getting a ton of questions about Fisher's disease...what it is, what it does, how do you pronounce it...? I found this video on YouTube, sponsored by the American Partnership For Eosinophilic Disorders (APFED). The video is about 5 minutes long, and details the lives of children with eosinophilic disorders. As a mom of one of these kids, this video made me cry like a baby. The kids talk about their life without food, and how it impacts them on a day-to-day basis. Parents talk about the struggles of raising a child with an eosinophilic disease. Take a look...


I have had a lot of people also ask how they can help. We belong to a local Eos support group that is putting on a Gala and Golf Tournament at Brookhaven Country Club in May. You can check out the website at www.angelsforeos.org The silent auction items are AMAZING! Every bit of the proceeds go to Cincinnati Children's Hospital, Center for Eosinophilic Disorders (where Fisher receives of his medical treatment).

I hope that this can answer some of your questions, and give you a little insight as to what our life is like with this yucky disease.

Friday, February 12, 2010

The Boy We're Bringing Home

Eosinophilic esophagitis (EE) is a chronic disorder of the digestive system in which large numbers of a particular type of white blood cell called eosinophils are present in the esophagus. The esophagus is the tube that carries food from the mouth to the stomach. Eosinophils are an important part of the immune system and play a role in fighting infection. This condition is characterized by vomiting, stomach or chest pain, failure to thrive (particularly in children), and difficulty swallowing.

Okay, so I'm finally able to post a bit about what's been going on this past week. We've had some difficulty getting online, due to the weather. As an added bonus, I lost my phone somewhere in Cincinnati.

Fisher had an EGD (a scope and biopsies of his esophagus) on Monday. Just from the how his esophagus looked at the time of the scope, Dr. A new that his EE was active and not well-controlled. The biopsy results were given to us Thursday and confirmed his suspicions with over 100 eos per/hpf in some places (over 15 is considered abnormal).

On Tuesday Fisher underwent some extensive allergy testing. Skin prick, patch and blood tests. He screamed for 20 mins. straight during the skin prick test. It took four adults - 2 nurses, myself, and the child life specialist - to hold him still so that he could complete the testing. To make matters worse, Fisher tested positive to 54 of the 75 pricks that were administered. He had multiple patches of hives all over his poor little arms. So now we have to restrict more foods (ie: tomatoes, blueberries, rice, etc.). Tough adjustment.

We were fortunate enough to get to move into the Ronald McDonald House on Tuesday. There is no other place I would rather stay! The house and the staff were absolutely amazing. They had a carnival on Wednesday and a magic show on Thursday for the kids. The house has 81 guest rooms, all of which were full, 2 commercial kitchens, 4 fully stocked play rooms, an exercise room, a library, a sanctuary, a craft room, and a live performance stage. We were so blessed to have the opportunity to stay there, and I really hope that we will be able to stay again on future visits.

Thursday was what I like to refer to as "game plan" day. We met with our team - Dr. A, Dr. A's nurse Staci, and the nutritionist - and decided on what treatment approach would be best for Fisher. Fisher also had a DEXA scan done earlier in the week that revealed that his bones are very weak, so for the time being we decided to avoid steroid treatment, which is often used to treat Eosinophilic Esophagitis. Obviously, part of his treatment plan includes adding some mega doses of calcium and vitamin D (he has a vitamin D deficiency, too), as well as removing any foods that he has EVER tested positive to. I haven't done an official count, but I think we're somewhere in the neighborhood of 30 different foods. So what will he eat? I'm so glad you asked! Fisher will be supplemented with a special amino acid-based formula that is hypoallergenic, meaning he should not have a reaction to it. This formula will comprise about half of his daily nutritional needs, more if he isn't eating well. Dr. A also wants Fisher to begin feeding therapy to work on his fear of food. It's difficult to know sometimes whether or not Fisher doesn't want to eat a food because it does make him feel bad, or whether he doesn't want to eat it because he is afraid that it will make him feel bad, even though the food may be safe. This is a very common problem with EE kids in his age group.

Some kids with EE have other underlying conditions that parents are not aware of. One of these conditions being a mitochondrial disorder. There are several types of mitochondrial disorders, some severe, others not. Fisher underwent some screening tests for a possible mitochondrial disorder. We ask that you would pray that Fisher does not have any of these disorders. The neurologists were not overly concerned after his evaluation, but wanted to be as definitive as possible.

Today we did a wrap-up of the week. The nutritionist wrote some nutritional goals for Fisher and put together a generalized daily meal plan. After another trip to the lab and an additional blood draw, Fisher and I headed back to our room to help Paul pack up the car. We are staying in Memphis tonight, and plan to be home tomorrow.

Monday, February 8, 2010

A Terrible, Horrible, (almost) No Good, Very Bad Day

We've known for weeks that our Monday in Cincinnati was going to be rough, but nothing, I repeat NOTHING, could have prepared me for today.

I woke up early this morning to prepare for the day ahead. Avyn is still not feeling well (double ear infection, cough, snot factory, etc.) and needed another breathing treatment and her antibiotics. Paul helped me dress the kids, and took London downstairs for breakfast while I finished packing a toy bag to occupy Fisher during his millions of appointments scheduled for today. We made it to the hospital, said some prayers, and Fisher and I gave hugs and kisses to everyone and set out on our way to "concourse C." The Cincinnati Children's Hospital is ginormous. It is it's own city, split up into at least seven buildings (that I know of), with each building having at least six stories, plus basements. Fortunately, the program scheduler made impeccable notes on our itinerary and we found our first destination with very little trouble.

I almost wish that we had gotten lost and missed the entire GI appointment entirely. The first couple of hours were a complete whirlwind, chaos personified. We met the doctor's nurse, gave an extensive medical history, and proceeded on to meet the program's research specialist. We were asked to enroll Fisher into one of their research programs, which I happily agreed to - hey, anything we can do to make this horrible disease a little more hopeful - and signed the consent forms. Next I met with the EGID (eosinophilic gastrointestinal diseases) program coordinator. We spoke for a while about the parent education class on Wednesday, and then it was time to meet Fisher's new GI. Since Fisher will see a few doctors this week, let's call the GI "Dr. A." Dr. A was great. Very personable, VERY thorough, and a little scary with all of his medical knowledge on eosinophilic diseases. He also mentioned that Fisher will most likely need speech therapy for his food aversions. Great. More therapy. Physical therapy twice a week isn't enough, evidently. After our visit with Dr. A the nutritionist stopped by to get a little more information about Fisher's current nutritional habits. What a mess. I wasn't prepared to meet with him until Friday, so I hadn't properly briefed myself on the sixteen food avoidances we are currently following, as well as the other half dozen foods that Fisher WON'T eat. Poor nutritionist. I'm not sure I was too much help to him, but promised I would be on my game at our meeting Friday. He was very gracious, and even made a remark about my information being very helpful. Nice guy. After all of this, Dr. A's nurse informed us that we were running late for Fisher's dexa scan, and that we needed to move along to another building. So, off we went.

Dexa scan - check. Potty break -check. Cart Fisher off to pre-op - check. Cry in the corner for a few minutes while Fisher is watching Meet the Robinsons while awaiting being wheeled into the OR - check.

Dr. A came to talk to me right after the procedure as Fisher was recovering in post-op. Not good news. Not good at all. Because of the wonderful magic of technology, he was able to hand me a semi-gloss 8x10 of Fisher's esophogus. He explained that the images showed Fisher's esophagus to have significant narrowing and thickening, something you don't ever want to happen to your esophagus. Just imagine trying to push food down the middle of one of those swimming pool noodles. Doesn't work too well, does it? That's Fisher's esophagus. That's why it takes him such a long time to eat. That's why he has very little appetite. That's why he complains that he's hungry but won't eat the food that you give him. He's literally afraid to eat.

We wait for the anesthesia to ware off, Fisher downs a couple of popsicles, and we are off to have a bone age study in radiology. We finish up and call Paul for pickup. He's running a little behind schedule because Avyn's fever cropped back up and he had to give her some Tylenol. Piece of cake, like trying to convince an adult to eat dog food.

We grab dinner, bathe children, and settle them down for bed. I proceed to tell Paul about who said what about which medical thing, and he hands me one great piece of news for the day - we get to move into the Ronald McDonald House tomorrow. Thank you, God. Just when I thought the world had given up on us altogether, something good. And a great reminder from an even greater friend today...Fisher may have a lot going on medically, but he is so fortunate and blessed to be receiving the BEST care in the COUNTRY right now. God provides. Our family, friends, and church family got us here. They took it upon themselves prayerfully and financially to make sure that Fisher receives the best medical care possible. I cannot offer enough thanks to everyone helping us. My baby's quality of life will be a little better because of you. God bless you.

Thursday, January 28, 2010

Stealing Kisses

For the past few weeks, I've been finding myself hovering over my sleeping children, particularly my little boys (not that I don't hover over Avyn, because I do, but not for too long because I don't want to wake her). I was reading an article a while back, written by another mom, and she said "always kiss your kids goodnight, even if they have already fallen asleep." Well, I kiss my kids before they go to sleep every night, and I didn't need an article to tell me to do that, but it did bring about some other ideas that I want to do for my children. So, lately I have been going into Fisher and London's room at night and curling up to each of them, holding them, kissing them, stroking their sweet little faces and soft tufts of hair, telling them over and over how much I love them. I spend time praying for them. I pray for their future - starting school, discovering what they want to be when they grow up, becoming Godly men, being wonderful husbands and great dads - all the stuff that I could possibly want for them, as well as the stuff I don't want to be a part of their lives - drugs, diseases, loneliness, tolerance, a "lukewarm" relationship with God. I almost always end up crying, but not just because I get so caught up thinking about how these moments will pass so quickly and how I'll never get them back, but about what kind of example I'm setting for them as their mom, as a Godly woman. Am I doing enough? Do I lead them down paths of righteousness or paths of destruction with my actions? Am I being the mother that God intends for me to be to these little blessings that He has entrusted me with? I don't know for sure. I do know that I can always do more, I can always strive to be better, and I sure hope that I'm on the right path.

Saturday, January 16, 2010

This Totally Stinks!

WARNING: This post is a bit of a rant, mixed in with a bit of annoyance and self-pity. If you're in a good mood, you may want to go visit another blog.

Fisher is not eating...again. And when I say he's not eating, I mean he's getting between 500-800 calories a day; that's half (at best) of what he needs. His EE symptoms are cropping up again. He's starting to gag on his food, and it takes him a couple of hours to eat half of a meal. The coughing is getting worse, he's not sleeping well at night, and I won't even bother to tell you what's going on in our bathroom...This disease is horrible! I have to wake up and watch my poor baby starve each and every day. He complains about being hungry and when we give him food to eat, he's afraid to eat it, afraid of how it's going to make him feel. I wish that we left for Cincinnati yesterday! Not that it's going to solve everything, because we know that it won't. But at least it will be a little comforting working with professionals in this field of medicine; people that KNOW what they're talking about. Last week we went to another specialist visit. The doctor suggested that we "just add some processed dairy to get some more fat and calories. If it's processed enough, surely he won't have a reaction. Start out with some yogurt, then cheese." I had to remind the doctor that Fisher is ANAPHYLACTIC to milk. The only time we ever had to use his epipen was with a reaction to dairy. If I eat yogurt and kiss his cheek, he breaks out in hives. Do you actually think that I'm going to feed him dairy?! Some people just don't get it. Apparently, even some doctor's don't get it.

So, I do have something to be VERY grateful for: God has given us the opportunity to go talk to a medical team that, not only "gets it," but they specialize in it. Thank you God! Please keep praying for Fisher; for comfort, for his little body to fight hard and stay strong. Pray for his spirit. It's so tough sometimes to have to explain to him why he can't eat all of the foods that other kids are eating, and yet he's still such a trooper about all of it. Pray for our family as we prepare to leave for Ohio. We'll be driving (pray for Paul and I in the car with our three littles for 16 hours), so pray for a safe trip. And PLEASE pray that we get some answers from these doctors. We know what Fisher has (it's called Eosinophilic Esophagitis), but we haven't found a treatment that works for him yet. We WILL have a game plan in place by the time we return home. Lastly, please pray that through all of this, through all of the suffering that our baby has to endure, that God will be glorified; that this will somehow be used for His glory.