We get by with a little help from our friends....

The past week and a half, we have learned so much.... We have learned how to (successfully) manage eczema, the impact of seasonal allergies, how to reduce this impact, how to manage asthma and food allergies, and most importantly how to encourage Morgan to stay on board with how to manage these things. We've spoken with teams of doctors, undergone many, many tests, met with some of the most intelligent and caring nurses I've ever met, met with child psychologists, the list goes one and on. But the biggest impact has been the "big kids" in the program. These are the kids who are mostly homeschooled because they are way too sick to make it into a classroom, kids who love sports, but can't partake because their asthma or skin issues are too flared by the exertion, kids who don't have social lives because when they have a eczema flare they look like they have ground beef covering their skin (seriously!). These kids have come from all corners of the country to get one thing, relief! They have enriched this program for us in ways you cannot imagine. All of them have been such wonderful examples for Morgan, whether it be providing her encouragement or by just entertaining her for the 100th hour with yet another game of "frogger." One 13 year old boy told Morgan, "you might have a (eczema) flare, but now you know what you've got to do, only look forward kiddo, don't look back." One 13 year old told me today, after overhearing my conversation with the child psychologist, "Maybe Morgan is tired of being the only one in your whole family who isn't allowed to itch? Maybe she should be able to call you out on it too?" Brilliant! (Yes, if I itch, it won't turn into a horrible rash because I don't have eczema, but maybe she won't be resentful about being the "only one" anymore. Thank you little lady!!!) So thank you to the "big kids." You're kindness, courage, and "silver lining thinking" are all the qualities I want for my kids, you've made this mama happy....

Cleanest Nose in the West!

One component of Morgan's treatment is to clean her from the inside out....And that means getting those sinuses cleared. Morgan has a ton of seasonal allergies, which leads to her constantly being "stuffy," congested and coughing. So she sprays salt water up one nostril and it comes out the other! Never in my wildest dreams did I think she would do this, but not only does she do this, she loves it! I think she must like breathing out of her nose for the first time in maybe ever, go figure!


There it comes!

Getting the squeeze bottle ready. Crazy!

Elitch Gardens!

Don't let my previous Debbie-downer posts fool you. We are having some great times here in Denver! We beat the 100 degree heat by going to an amusement park, which is like a smaller scale Disneyland. We had so much fun! If Ryan and I weren't so exhausted, our crazy monkey children could have stayed there for days...


Aidan LOVED the bumper cars!

And Morgan LOVED the "kid roller coaster." Her squeal was so loud and she had a blast!


We went on a boat ride... And got SOAKED! Everyone except for my cell phone survived and had fun! The worst part was when you finished the ride and were drenched, you had to walk across a bridge, where you got hit AGAIN by another boat going by.

Zoo-time....

Luckily, we have a break on the weekends from the hospital... So we headed over to the Denver Zoo, which was a nice change from our little Boise Zoo. AND, admission was FREE for our whole family since we are a "National Jewish Family." We had a lot of fun looking at the animals our kids haven't had a chance to see....



Please disregard the greasy hair! We haven't figured out how to apply tons of moisturizer without turning her into a grease head. I just about jumped on an old-man's back and started slugging, when he made a comment to Morgan about needing to wash and brush her hair. On another note, it is absolutely amazing to see how much better Morgan is feeling without all of the scratching and with getting a full night's sleep.

Monkey-lady.

Daddy, his kids and their lollipops.

How I love these babes o' mine. Grumpy Aidan face and all.

Daddy and Aidan are HERE!

We are so lucky that Ryan and Aidan were able to come and visit the Kearney ladies in Denver. While Morgan has handled all of this so well, she does have her "moments" (okay, FITS!) and being the constant caretaker and treatment applicator was making Mama a little weary (okay, grumpy). We are having a wonderful time with them, we're just better together!


The nutritionist and I had a GREAT meeting, again, I learned a ton. She really thinks Morgan needs more calcium and suggested pudding since Morgan refuses to drink milk. So we did our 97th wet wrap of the week and headed down to the cafeteria that is literally straight out of "One Flew Over the Cuckoo's Nest" in it's furnishings. That's fine with me, National Jewish, put all of your money toward food allergy research:) Don't waste it on making your cafeteria pretty!

Hotel Heaven!

The Kearney children do not belong in hotels. Period. We are loud, we like to jump, we like to sing, we like to be goofy, we like to race down hallways, and did I mention we are loud? I really feel for the other people who are staying at this hotel. That being said, the Kearney's are having some fun in our little studio and are taking advantage of having someone come and make the bed every day and clean. All in all, the Kearney's might be fans of hotel living and the Kearney children may be in heaven, but I think the Staybridge folks will be glad when check out day arrives!


This was Morgan's first night WITHOUT the sedative and WITHOUT being in a wrap... She did fantastic, although we think she may need a partial wrap tonight so we don't get into trouble when we check back into the hospital on Monday! This sleeping arrangement didn't last too long, but it sure was cute.


Aidan and Mommy.

Sport court time!

Some of my favorite things. My kids being entertained, beer, a book and access to the internet. Can't beat it! p.s. My other favorite thing about this picture... You can't see it, but in the background is the biggest Target store I have ever seen. Another one of my favorite things.

We may not be in the hospital, but that doesn't mean the treatments stop! Another soak! This girl is a real-life Sponge-Bob Square Pants.

A wrapped up bunny....

Got allergies?

Morgan does... And A LOT! I won't bore you with the specifics, but the tests came back... If you are a "food allergy mom," you look forward to allergy testing with a bizarre and unrealistic hope that the numbers will drop and that you can possibly be "food challenged," with good results and then everything can go back to "normal." "Normal" would mean I wouldn't read, re-read, re-read and double check labels anymore, I wouldn't have to make 5 million cupcakes in the middle of the night to stock pile them in the preschool's freezer, and I would stop worrying that a cookie will kill my child. Yes, I said it, food can kill my child and I was just handed the test results proving it. Instead of the numbers dropping, they have grown and they have grown a lot. That means that grocery stores, friend's houses, restaurants and school lunch rooms, actually anywhere that peanuts, tree nuts, fish, eggs and sesame seeds are present, will continue to be our battlefield, until there is a CURE anyway. We won't be getting any foods back, but fortunately we didn't lose any either!!! We'll be talking with our treatment team about some of the experimental treatments that are currently underway. We won't be able to partake, as most are occurring at Duke University. Once I get my money printing machine up and running and get the hardwoods put in, we'll start printing for that trip:)

OOPS!

I forgot to mention what the good news is! We are HERE and we are going to get this little body figured out...We are definitely getting our money's worth and thankfully, we are doing this now rather that when she's older... The other good news is that I am getting really good at Ms. Pacman and Frogger, which they have the old school sit down version of (like the kind they had at Chuck E. Cheese and Godfather's Pizza). It's the only thing Morgan can do with her hands wrapped up, so I have to admit, we are getting pretty good at it.... The other good news is Ryan and Aidan will be here tomorrow and we have a fantastic weekend ahead, playing in Denver!!!
Look how shiny her face is! (And how greasy her hair is! That's what happens when you rub lotion in her hair and wrap it up in gauze for 6 hours per day.... And this was after we washed it!) The other good news... We have a wonderful daughter.

And the good news is.....?

Oh boy, what a day we've had so far! Morgan's back was clear enough for us to do the skin testing, one of the steps in determining whether or not we are on track with what we have thought she is allergic... These tests are not 100% accurate, but that being said, all we've got to work with.... After 10 or so pokes on Morgan's back (after a really quick prayer that said something like, "I really doubt we are going to find out she's not allergic, but I would give ANYTHING to just take one food off of the list. Please, please, please!"), we sat there for a second, while Morgan cried from the aforementioned pokes... We sat for another second, NO HIVES, HURRAY! Maybe she really has grown out of these horrible allergies... We sat for another second with Morgan saying that her back was itchy. Uh-oh. I know what that means. Her skin was reacting and did it ever. Her back had HUGE hives. We haven't received the official "word" from the doctor, but I fear we may have just lost a food.... or five. Maybe not, some of the positives might have been multiple types of nuts. It's heartbreaking to see that the battle has not been won.

Then after that oh so fun moment, we went on to meet with a walking brain, and a brain that is only interested in eczema. Most of what he said went WAY over this fake-blonde girl's head, but I did get some good information. Not good news, but good information. Although I was pleased with Morgan's skin changes, they are not. They think she should have progressed further than this.... We're going to try Vitamin D supplements, stronger medications and run more intensive tests to see why she's responding. Also on the list "to-do" is some intensive counseling. Kids with eczema get into a vicious cycle of itch, then rashing, then anxiety about itching and rashing, which makes them itch more, which makes them rash more and have more anxiety. Those of you who know Morgan, know that she can be intense. Some (not all) is related to the constant state of tension in her little body, so we're going to work on getting some tools to reduce that stress and anxiety and teach her ways to calm herself in ways other than itching.... Oh the party continues.

Oh but wait, there's more... We've learned (which I have worried about) that carpet is an eczema child's worst nightmare. They highly recommend that we put hardwoods throughout the house in any environment that Morgan "regulars." Hmmmm, that would be the whole house. So I have purchased a money printer and have set up a little money-printing studio in our extended stay hotel. (Kidding FBI!)

Soak and Seal, repeat. Soak and Seal, repeat. Soak and seal, repeat!

Like I mentioned in the previous post, we have learned a ton and have been doing A LOT of treatments. I can't believe the improvement on Morgan's skin. It's fantastic. What we do is soak her in a bathtub for 20 minutes, with wet towels all over her and then immediately put TONS of topical steroids all over her body. And I mean tons, we have gone through the amount of topical steroids we usually go through in a year, in the past day and a half. I expressed awe about this but what the doctor said made sense, why are you putting them on if they don't work. It's better to get the situation under control so you don't have to use them again. Aha, that's why you went to medical school, Dr.! Then we put wet pajamas and wet tube socks on her arms and legs and then dry pajamas. Then she sits for 2 hours (kind of hard to do anything with your hands wrapped up). We're doing three of these treatments per day until her skin is clear. We even just did one in the hotel and she'll sleep in the wet pajamas. (Luckily they prescribed a sedative for the next couple of days, but as I'm typing, I'm not sure it's doing the trick. She's kind of acting like a drunk college kid. Great.)

We're also in the phase of information gathering, meaning figuring out all that is going on in this little body. A big emphasis is being placed on her asthma, which is something we've never worried about before, but our attending doctor brought up an excellent point. If her asthma isn't treated well and she does have an allergic reaction from food, she is much more likely to have difficulty breathing and then, well, we won't go into that. So, needless to say, I'm really happy for this emphasis. Food allergy testing was today and tomorrow. We aren't hopeful that we will come back with any foods, meaning that she'll be "food challenged" and declared to be free of that allergy. The doctor seemed to think that her reactions have been the "real deal," meaning until there's a cure, we'll continue our hyperviligence!

This was after the sedative was given last night. She was exhausted to begin with, so the sucker really did the trick. (Notice the side rails are up?) She was goofy and this morning said she was super dizzy. BUT, she slept through the night for literally the first time in a couple of years and was so proud of herself that she didn't scratch herself.

Snug as a bug in a rug. During the day wraps, her face was covered as well, with openings for her eyes and mouth. Can't say Ms. M was a fan of that! There is no way that Ryan and I could have convinced her to get wrapped like this at home, even with her being on her "better" behavior for the nursing staff, she threw quite a major fit when we first did it. I have to admit, I would have felt pretty claustrophobic and uncomfortable as well. But I think she's seeing the benefits, so we've had a lot less resistance!

"Mom, we're going to be really bored of each other by the end of this, right?"

This is what Morgan has told me a couple of times today, "Mom, we're going to get really bored of each other by the end of this, right?" She might get bored of me, however, I think it might be impossible to get bored of Morgan. She's a nut, an absolute nut. She told everyone today her name is Margaret and she's 4 years old. What? I can't rest for a second because I never have any idea what she might be saying or doing! Her giggle has been infectious throughout the 2nd floor of NJH, but her screams of frustration have also been heard. You definitely always know what this girl is feeling. As the nurse said today, "She's has a bit of a drama gene, right?" Ummm, yeah.

We've been here since Sunday night, but it feels we've been here a week and a half already.... In a good way because I have learned 6 years worth of information as to how to take care of Morgan. I can't believe how little we knew, no wonder her skin has looked like raw chicken. In a bad way, because we are exhausted! It's kind of like being at summer camp, but you're in a hospital setting. For example, we were awakened this morning bright and early (like summer camp, not even time to get dressed, luckily I slept in sweats!, or have coffee, or brush my teeth) to begin treatments, tests, etc. (like a hospital). I am in even more in awe of families who do this when their child's life is at stake. It is beyond fathom.


A little ice cream cone before we hit the friendly skies. You never know what they may take out of Morgan's diet, so I figured we may as well have at least one last hurrah with our friend, dairy!

Thanks to the Hamiltons, this little girl was entertained on the flight... Unfortunately, her fingers and mouth are not connected, meaning she can use both at the same time. She talked the ENTIRE flight. I now am aware of every conversation she has ever had or overheard, in fine detail.

Oh how we love this tooth fairy dog, compliments of Grandma Dolly! This little dog has come along to all of our treatments and tests.


When we first got to National Jewish, we were immediately shuttled to the room we would spend the next 36 hours. Because of Morgan's experience with infections, we were quarantined until they could determine she did not have MRSA. I opened her backpack to get out some activities, and what do I find? Yes, a whoopie cushion! I had no idea she even had this thing. Better yet, when our treatment team came into our room for the first time, yep, she sat on it. I wish you could have seen the doctor's face. It was a mixture of shock and "oh crap," I am going to have my hands full with this little lady! Yes, you are Dr. Abbott!g
Good Ole Ronnie McD has sponsored the play area. We haven't spent too much time there because there hasn't been much time to play! But that's good, we can play in Boise, we're here to pick their brains!

Good-bye Boise... Hello Denver!

If someone had told me 6 years ago that I would have a little girl whose eczema was so severe that she would lose sleep from the constant itching, have oozing sores all over her body (eliciting many a random question), have some social concerns (due to the aforementioned questions, stares and comments), and would lead to her body becoming resistant to antibiotics due to the constant application and administration of medication, I would have looked at them with a funny look. If they would have said that this condition would become so severe that we would search and search for a treatment program that could alleviate these issues and that it would cost as much as several tropical vacations AND that we would willingly sign up for this... I would look for the crack pipe that this person must be smoking from. No way, I would have said. No way could this "little" condition that is randomly mentioned in baby books become so severe and impact our lives in so many ways.

And the food allergies, oh the food allergies! When we first started down the food allergy path, starting with a milk and egg allergy, I remember thinking, "Well thank God she's not allergic to peanuts." Oh but wait, she is allergic to peanuts, and tree nuts, and fish, and sesame and eggs... Again, if someone told me 6 years ago that these allergies would literally wake me up in the middle of the night with nightmares that some factory worker in some random food manufacturing plant is finishing up his peanut butter sandwich and he doesn't wash his hands, I would have started the "hyena Sarah laugh" I do when something is really silly. In this nightmare, not only does he not wash his hands, but then he touches the bagel he is making, which ends up on my daughter's breakfast plate. One bite and then she's having an anaphylactic reaction and we speed to the hospital as her throat closes.... If someone had told me that this nightmare wouldn't only be a dream but would happen a couple of times, I would have been devastated and shocked. So here we are, gladly trading in some tropical vacations to hopefully get more answers about our food allergies (I say "our" because really, the Kearneys are in this together) and to hopefully get this girl some relief (sleeping through the night for the first time in 6 years would be neat!) We will be gone for three weeks and I will be sure to keep all of you posted as to our adventures at National Jewish Hospital. I am so thankful for all of the sweet words, thoughts and prayers we've had from our family and friends, you all have no idea how much we appreciate the love. That being said, we do recognize just how lucky we are this is our issue and we are not facing something else. In fact, one of our Denver activities are going to be to visit kids who are much, much sicker than Morgan and give away some gifts for their entertainment, as well as bring some goodies to the Ronald McDonald House because let's be real, life could be much more difficult and heartbreaking for us. So off to Denver we go.... We'll miss you Boise!!!!