I am terrible at asking for help. Absolutely atrociously terrible at it. Almost embarrassingly bad at it actually. I am fiercely stubborn and hard headed and independent. I can admit and embrace and work on changing the pieces of that that need changing.

Last year we hit our maximum out of pocket in medical expenses with Jonah at $4,000 before the big hospitalization at Texas Children’s. We came close to hitting it the year before that, too. Jonah has had 5 surgeries at this point and will likely need another before too terribly long. That doesn’t include our allergist who wasn’t even on our insurance plan and saw us anyway with just a copay and it doesn’t include our chiropractor who we self-payed because he charged us less then our copay would’ve been. I switched school districts this year primarily because the new school district had such better insurance then my last district. I took a pay cut, but it’s basically a wash with the benefit change. Needless to say, we are still paying off pieces of medical bills and probably will be for a while. We knew beyond a shadow of a doubt that this trip was absolutely needed and needed ASAP for Jonah to be able to continue to be successful at life. I hadn’t put the numbers together yet, but I knew I didn’t have 2 weeks worth of days off, I knew flights for 3 people were expensive and I knew 2 weeks worth of medical care wasn’t going to be cheap. I also knew that this was clearly where God wanted Jonah after our hospital option before this told us they had no idea what to do with him. We had briefly heard about National Jewish from a dermatologist at Tx Children’s and our allergist had mentioned it once or twice as a down the road thing a few months before. There was one day in September when Jonah was so uncomfortable I left school at noon and drove him to Waco and Dr. Perry looked at him, told me he needed to go and he would start the paperwork the next day. I don’t think either of us realized how quickly we would be going. As I started to put the numbers together I realized that this was going to be a significant financial investment and Jason and I had gotten rid of all of our credit cards minus one emergency card not all that long before. There was only one set of people in the world that I could ever imagine asking for financial help to make this happen and I would only ask them because they’ve made it clear to all of us that they would always find a way to make sure we were all taken care of medically. I was hesitant to even ask them for help just because I am so ridiculously stubborn and felt like God has given us Jonah to take care of so we needed to figure out how to do it (I know this is absolutely ridiculous and unfounded and really goes against everything that I should be thinking and feeling.)

This trip has been more expensive then I originally anticipated. I hadn’t thought about the fact that Jonah had hoodies for jackets because we live in Texas or the cost of the wet wrap supplies or gas while we were here or the fact that hospital food costs at least 25 times as much as normal food or the cost of medications for treatment. I haven’t sat down to total everything yet, but I’m pretty confident that this trip cost in the neighborhood of $4,000 including the days that I will not be paid for at school. Jason’s boss has allowed him to work from here, so where he was still glued to his computer for most of the day, he was able to be here for meetings and dr. appt’s and that sort of thing and didn’t have to use his vacation time. A few of our friends organized some sort of massive collection to help take care of our son. I’m still not completely sure of everyone that participated in that. Winter clothes and wet wrap supplies showed up at our house before we left. Another group of friends sent snacks and games for Jason and I while another friend sent the same for Jonah. There have been people who have never met Jonah who have sent him things to help pass the time and a random lady in Walgreens thought that he took me telling him no to a snack in the check out line so well that she bought it for him anyway and handed it to him. I feel grossly inadequate for all of the love that has been lavished upon us from the financial blessings to the group of girlfriends who showed up at my house after one caught my mid church meltdown one week and listened to me completely meltdown and ugly cry and prayed for strength and healing for our boy who has in the process become a little bit of everyone’s boy. There was another family today that showed up at the Ronald McDonald house (which is a HUGE blessing in and of itself ) that used to go to our church, had never met Jonah or I, hadn’t seen Jason in years and brought Jonah things to help keep him entertained on the plane on the way home. My cousin have checked in on me regularly, offered to make trips out to see us in Texas to make home seem less far away, encouraged, and offered expertise where they have it, they have read this ridiculously long blog to my grandparents, probably multiple times by now and aren’t even THAT cranky about it. I have a friend who has chased my dog through her neighborhood no less then 100 times in the last 2 weeks (I really don’t think I’m exaggerating) and is still talking to me. I prayed for us to have a doctor while we were here that would appreciate all of the ridiculousness that Jonah is while still being everything he needed him to be medically and we got that answered in a big way. Our doctor got to know him, love him and appreciate him in all of his mess and I think was genuinely sad to see him leave. Jonah has gotten multiple books and cards in the mail from a certain aunt who definitely mailed the first one before we even left. We have required 3 airport trips that have been made without complaint by the time this trip is over. We have had lots of face time calls (which Jonah loves) with family members and some of Jonah’s favorite friends.

For the first week in his life (since he was at least 2 months old, maybe before that), Jonah has gone to bed without itching. He has woken up without itching. He has lived most of his week without itching. I haven’t had to worry about infection or sending our doctor pictures of what’s going on or stressing out about whether or not I’m putting the right cream where. Our village, which is so much bigger then I could have ever realized, has helped to make it possible. I am thankful for each and every one of you who have helped through any way at all to get him to this point whether it’s through encouragement (which I’m still horrible at taking, if you don’t believe me, go look at the encouraging comments that I have selectively ignored…Baby steps here people, I didn’t delete them), praying for him, us and his doctors, any sort of gift, financial or otherwise, taking care of any of the logistics that have made this possible for us to not be home or at work for two weeks. Thank you for loving our son. We are more thankful then what we could put into words.

It’s been a loooooong two weeks! We are definitely ready to head home. I’m not sure how long it will take Jonah to get used to sleeping in his own room again, but I’m pretty sure it will take me about 2 minutes to re-adjust.

As far as diagnostics go…we really didn’t find out very much on what is causing Jonah’s issues. We know the nickel is a probability and he does have asthma that we didn’t know about, but other then that, we really don’t have any other answers. I had a hard hard time hearing that in the final summary meeting. After talking to Dr. Perry, I feel better about us not having a specific diagnosis. He reassured me (after lots of tears from me) that if anyone has the research to figure this out (if it’s just an allergy/immunology thing), that NJH would be the ones to do it and that he wasn’t giving up on looking and researching either. There has to be a correlation between all of Jonah’s weirdness that just hasn’t clicked in yet. None of them disagreed that there is an issue, they just don’t have the ability to figure it out yet. I felt very very confident in every doctor Jonah saw and felt like all of them had his best interest in mind in some way shape or form. They did take extra vials of blood for them to continue looking at. I don’t feel like there’s a huge likelihood that my phone will ring in a few weeks with some sort of super insightful information, but if something clicks in one day, it’s there for them to test.

Here are the positives of what we got out of this trip. Jonah’s skin looks normal. He still has a few very very tiny spots of dry skin, but overall, he looks totally normal. He’s not itching constantly. He does still itch when he gets nervous or stressed, but nothing compared to what he was. We got reassurance that emotionally, he is doing way way better then could be expected. He does have some tendencies towards hyperactivity in the afternoon, but nothing anywhere close to even encouraging medication. He is a “delightful child” who won hearts everywhere we went. He is off steroid creams. Let me repeat. He is OFF steroid creams. This doesn’t mean that he will never need them again, but for the first week of his life post 2 months old, he hasn’t had a drop of steroid in/on him anywhere. We also know that because of the care and concern our doctor has had for him over the long term and the way he has always dosed his medication, he has no long term side effects from having been on them so much. We also know that our doctor, who we trusted was a good doctor because he is extremely intelligent, well trained, and most importantly really loves my kid is in fact an awesome doctor medically and has done a great job keeping Jonah as moderated as possible without the intense intervention he’s had here as per some of the greatest doctors in the country/world. He will continue to be Jonah’s doctor for as long as he will have us. We have a new diet plan in place for Jonah and the people around us to help it happen. We will try it for 4-6 months (it is supposed to take 1-3 months to show any effect at all) and if it doesn’t work, we will try something different…again.

I am nervous and I am scared. Jonah knows what healthy feels like now. I don’t want him to ever forget it again. I want him to know wellness for longer then a week at a time. I want him to be comfortable. It all happened here in this nice safe bubble, but tomorrow we leave this bubble with his nurses and a dietician and Dr. Lanser (his favorite person here) and Dr. Leung (who is the single smartest person I have ever met) and most importantly his new friends who are kids who know what it’s like to not touch other people’s food or to itch all of the time or to look at each other while covered in mummy like clothes and know that they’re not even going to ask you what’s wrong with you. It was 2 weeks filled with uncomfortable tests and wraps and all sorts of other things, but it was also two weeks full of safety. if something happened, they were all over any spot with a plan to take care of it. Please continue to pray that we will be able to maintain this at home as well, if not better then it has been here.

It is looking like we might get dismissed from NJH a day early! We can’t change our flights or anything from Saturday, so Jonah and I will have a day to relax a bit while Jason works on Friday. The exception to this is if we need to see another specialist between now and when we go home, but we shall see tomorrow 🙂

We do have an official asthma diagnosis and will leave with a shiny new inhaler to go with it. Jonah has pretty consistently been in either the very bottom of his green zone or the top of his yellow zone for the last week. We will see at home if the altitude has anything to do with that.

Jonah’s patch testing came off today. He has a for sure positive on the ethylenediamine that was positive 2 years ago and has a pretty confident it’s positive on the nickel which is prompting the low-nickel diet that he will be starting when we get home and can get a plan worked out for it. It’s a doozy…It’s kind of counter intuitive to the way that we have been feeding him. A lot of things that are grown close to the ground are high in nickel. We are also going to need to get with the dietician again tomorrow since the government will reopen and she can check with the USDA to see which locations will be the best for us to get produce from since the level of nickel in soil varies with the region that it’s grown in.

We also found out that Jonah’s ANA numbers (which they expected to be low due to the amount of steroids he has been on to try and control all of this mess) were positive but not hugely significantly positive. A normal negative is between 0-40 and Jonah’s is 49. This was a bit surprising because they were expecting it to be in the 0-5 range. Dr. Leung wants a consult or at least an opinion on the labs from the rheumatologist to make a decision on whether or not this needs to be pursued further. We will find out the answer to that as well tomorrow, hopefully.

It’s been a looooong ten days around here, but Jonah looks like a new kid. I hope that when we are able to get the sleep under control, it will really complete the journey of trying to get him to everyone else’s normal way of feeling and not just his own piece of Jonah normal.

We are almost in double digits! Today seemed to be just about the longest day here so far, even though we were done and at the zoo by 3:30 this afternoon and we were at the hospital until 7 last night.

Today Jonah did a Clindamycin challenge. He tolerated it well with only a few red spots and slightly black eyes. Now that it’s had a while to sit, he seems to be popping up with a few other hives now that are about the size of a pinprick so we will see tomorrow whether this is officially a pass or a fail.

Tomorrow is a busy busy day. We have to be at NJH at 7:30 and we will see Dr. Leung at 8 am. We will then meet with the nutritionist at 10:00 and Jonah has art therapy at 11. After all of the morning appointments are taken care of, we will start the Keflex challenge as well to see how he handles that drug. At some point tomorrow, the patches will come off of Jonah’s back and he will be able to get into his soaking routine. Even without the bath for 24 hours, we are already noticing his skin drying out again. This is a little frustrating for me, but I have to remember that there are 20 layers of damaged skin there and it will take up to a month for all of them to be healed.

Hoping tomorrow is the day that we get all of this tied together for Jonah…lots of big appointments!

Day seven is there…you just missed it… I promise. No really, it was a completely non-climactic day and really not worth a whole lot of time or energy for me to write about it or for you to read it.

Well…We are still hanging out with a gluten free kid. Jonah had his wheat tolerance test today. He had to eat cream of wheat in increasing doses until he got to 1/3 of a cup and then wait 2 hours. He ended up with watery everything (eyes and nose), itchy, pink lips and sneezes. He didn’t have any hives or anaphylaxis so it’s not a true IGE reaction, but it was enough to definitely make him uncomfortable so we will continue to avoid wheat for him. They suspect he probably has celiac as well, but with it being so far removed from his system, there is no way that the test will come back positive.

We met with an ENT today, as well. While we’re still waiting on the sleep study results to solidify his recommendations for Jonah, just from the exam, he is recommending a more aggressive surgery for Jonah to open up his night time airway. In the event that the sleep study comes back totally clear, then we will leave well enough alone. If it does not, I will leave it up to our at home ENT to make the call on whether or not opening up his sinuses (or whatever else is blocked up) will be more beneficial then a CPAP over the long term. He also sucked out some ear grossness that had built up from who knows what, but would hopefully prevent it from blocking up his tube and starting that vicious cycle again.

Jonah is currently rocking about 36 different chemicals on his back on a patch test. They will hopefully give us some guidance on the contact issues he is having. Hopefully this is the root of most of his problems.

Tomorrow is a pretty low key day from what I can tell based on our schedule. The parent class is on relaxation (HAHAHAHA!!!!) so that’s kind of awesome. We have our normal appointment with Dr. Lanser and Dr. Szefler and Jonah will have an art therapy group. We will also be doing a Clindamycin challenge to see about possibly getting some antibiotics back into his repertoire of treatments.
Wednesday we will meet with Dr. Leung again and with Nutrition to try and come up with a reasonable low nickel diet. Jonah’s patches will also come off on Thursday with another antibiotic tolerance test as well.

Today was our fun day (after waking up from a sleep study at 6 am, I mean)!

    We started our day off by driving out to Vail, realizing they hadn’t had nearly as much snow, and heading back towards Copper Mountain, where they had had plenty of it. None of the resorts or lifts open untilNovember 1st, but we found plenty of snow to play in regardless. It was both mine and Jonah’s first time to actually be in real snow. He LOVED snow balls and I tried to make a little snow man, but to be honest, I don’t know how to.  Even if I did, it wouldn’t have survived the wrath of a 5 year old little man with a goal to cover everyone in as much snow as possible. He made snow angels and rolled down hills and had a good time being a boy. 

    After that, we realized how close we were to Breckenridge where Jason and I went on our honeymoon, so we stopped at the lodge we stayed at and took a 10 years later family picture in the same spot that we took our first honeymoon picture at. We went down into the little town, saw Bubba Gump shrimp and the discussion about where to eat lunch at was over. Jonah LOVES shrimp (ok…I love shrimp. My love for shrimp is hereditary) so it was a pretty easy choice and an awesome lunch.

    At that point, I was exhausted (our sleep lab friend came in about once an hour for something and I woke up every single time, even though Jonah slept through them all) and Jonah was looking pretty tired, too. We came back to the house, wet wrapped Jonah, watched part of the disastrous UF game and took a nap. After naptime, it was pretty much dinner time, so we had dinner at the Ronald McDonald house, then went over to the aquarium where Jonah got to meet a few mermaids and watch the sharks for a while.

All in all, a super successful day with minimal medical experiences. He does have a few red dots from the glue used to hold on the leads during the sleep study, but the nurse at NJH said they should go away in a day or two with his normal creams.

It was pretty impossible to blog last night, so you’re getting a 2 for 1 tonight.

We started off Friday with a drive out to Littleton to see a dermatologist. She works in partnership with National Jewish. She was just as helpful as every other pediatric dermatologist has ever been. Yes his skin is rough, yes he has eczema, yes there are other weird things that go with it, but she didn’t think it was psoriasis yet, and she didn’t know what else it could be that would tie all of it together. I am pretty confident….ok completely confident…she could tell how irritated I was when I left. She didn’t think that a skin biopsy would be beneficial, and where part of me was glad Jonah didn’t have to go through that, part of me just wanted her to look at it anyway. I talked to our Dr. Perry on the way back and I’m pretty sure I was irritated enough that I even snapped at him.

We got back to the hospital, wet wrapped Jonah and got ready for our 2 o’clock team meeting. Right about that time, my phone rang with the scheduling number from the partner hospital. We somehow managed to get Jonah’s sleep study not only scheduled, but scheduled with 2 dates to choose from. We chose to go ahead and do it last night so it was done and over with and they would be able to hopefully get results back before we went back to Houston.
We had our team meeting at 2 with 2 of our doctors and the psychologist. The upside is that the psychologist definitely thinks Jonah has some hyperactive tendencies, but thinks they are disorder/sleep related and not ADHD because of how easy he is to correct. She also said that he was “truly delightful”. She may say that to everyone, but even if she does, I still appreciate the compliment.

We also made a plan for next week. We will be doing a food challenge with wheat to see if we can maybe add that back in to his diet. More importantly, we will be doing an antibiotic challenge with Clindamycin and with Keflex. Hopefully he will pass at least one of those. We are running out of antibiotics to use on him and adding back in even one of those would make life easier. Penicillin is just totally out. We’ve tried that one before and he continues to have reactions to drugs that are barely related to it, so it’s a done deal. He will get patches put on on Monday and they will stay for a few days and will then be read on Thursday.
At this point, they still don’t know what is causing the issue, but they have a pretty decent theory that I thought was completely ridiculous when they brought it up (twice now) but after I looked at it some more, I think they are probably onto something. He has tested positive to nickel on a patch testing before. We have tried to keep him away from most metals, but didn’t really pay much attention to it. Apparently nickel is also found in a WHOLE lot of the foods he eats (lettuce, spinach, nuts, apples, citrus, fish etc). It’s a naturally occurring element in the soil. It is not common for this skin allergy to be affected by diet, but it has happened. We are also meeting with a dietician this week to work on switching his diet away from foods high in nickel.

Jonah had his sleep study last night.  He started snoring almost immediately. That can’t be a super good sign. We have already had his tonsils and adenoids out, so I’m not really sure if we have any other options other then a CPAP machine. We are meeting with ENT on Monday and I’m sure we will be speaking with our own ENT when we get home if there are any other solutions. He has teeny tiny sinuses and ear canals and everything else, so it makes sense that there isn’t a whole lot of space for air back there. It’s frustrating none-the-less for him.

We also found an Udi’s cafe on the way home from NJH. They are the company that makes the gluten free bread we buy. Jonah LOVED finding some non-itchy pizza and he and Jason devoured a pizza and a half between them.

When we got home Jonah had a package at the front desk from a friend that we used to work with almost 10 years ago and his wife (Everett and Susan). He LOVED the anatomy book (I’m telling you, this kid is going to be a doctor when he grows up) and cars. We have had so so many people who have helped us get here and on the quest for relief for Jonah. I am terrible at letting people do anything for me and just not taking care of it myself. I am what you would call…stubborn. There, I said it, and I might even say it again later. It’s genetic, if you’ve met my grandparents, you understand. I am so thankful for everyone who has rallied around us, and mostly around Jonah. When he is at a point that he is aware that sometimes he looks different then others on anything from his skin, to his missing two front teeth, I am so thankful that I can point to everyone around him and without a doubt, he knows that he is loved. I’m not sure what it is about this boy that makes him a friend to everyone, but I am so thankful that it is a quality that he has. He’s some kind of special.

First of all…doesn’t he look awesome?

Today was kind of non-climactic medically speaking. We’re in the in between stages of the program where they’ve ruled out all of the normal eczema kid stuff and now we’re working on the “my kid is interesting” eczema stuff. Tomorrow we’re meeting with one of the adjunct dermatologists that splits time between Colorado Children’s and National Jewish. She is looking for some very specific skin disorders and seeing if she finds anything that maybe one of our doctors has missed. She has been armed with a specific list of symptoms that they are sending him to her for.

Next week we will begin patch testing (unless she wants to start it tomorrow and then we will start it with her) and they also want to try some antibiotic challenges with him next week since we are down to very very few that he can take without reaction. Monday we will also see ENT to get a new CT scan done to see if they can see a correlation between the amount of stuff in his face to the amount of irritation on his skin. Our ENT has noticed it before, but they want to look at films themselves, especially since he’s rinsing nastiness out of his nose.

This afternoon we escaped a little bit early and went to the zoo. Jonah LOVES zoos.
We’re hoping to go see snow this weekend up in the mountains and go to the aquarium or the science museum (both are free for people staying at the Ronald McDonald house, which is awesome). Tonight, there was a group that came in and made dinner that were all alumni from the University of Central Florida that live in the Denver area now. I think it’s kind of amazing the groups that pull together to help parents out when they are staying here. We’ve had the best experience possible so far for spending 2 weeks in a hospital with your child. Please continue praying for clear answers and a happy, healthy kid.

In what might have been the highlight of the trip so far, this peacock chased Jonah for a few steps and squawked a few times. I thought he’d hate peacocks forever…Nope. He still tried to pet it again later.

After meeting with Dr. Leung this morning, the rest of the day was kind of spent trying to make all of his recommendations happen. We switched Jonah’s face cream from a steroid immediately and will begin switching his body cream away from a steroid as well. We are in the process of scheduling a few procedures at the children’s hospital that partners with National Jewish to get some additional results. The sleep study is still trying to be scheduled and they are also trying to get him in to get some patch testing and skin scrapes done as well. He has had the patch testing done before, but it’s been a VERY long time. They will basically put a large bandaid with multiple different types of chemicals and other things he comes in contact with on his back and then leave it there for 2 days and then pull it off to see how his skin reacts. For those two days he can’t touch it or mess with it at all. It will make him super happy in the sense that he won’t have to do a bath over those days, but I’m sure it will be irritating in it’s own right. We haven’t done skin scrapings before, but they really don’t sound enjoyable at all.

Jonah also did what they call a free run test today. He ran for over half a mile and then had to stop in the middle of it to do breathing tests. Somehow his readings got better the more that he ran. He’s a unique kid. He kind of enjoyed running that long. I’m glad that he’s figured out how to run since baseball season last year 🙂

When we got back home today Jonah had a package from Aunt Becky with a card and a new book and he was super excited to get to open mail. He is pretty easy to please… It makes Christmas easy.

I’m not sure what is going on tomorrow in all honesty. We did have to start antibiotic drops on his ears, and he is draining a lot of colored junk so they wanted him to have an ENT consult at some point in the next few days. I know that I have a lot of homework for Dr. Leung to turn in, so I’m assuming we will meet with him again in the morning. We will also be meeting with our social worker for the program as well again. Please continue praying for good solid answers and a solution for our boy.

Also, In Denver, Starbucks are in a barn sometimes.

I wanted to post this while I remembered pieces of what the super specialist said.

We just saw Dr. Leung, who from the response I got from our allergist (Dr. Perry), is pretty much the begin all and end all to allergy/immunology/eczema research. I went and googled him, and I believe him.
He threw a lot of things at me and I caught very very little of it, but gave our fellow some clear direction to run with. We will see him again in a few days. The biggest piece of what we got out of what he said is that Jonah is “very very unusual” which we were already aware of, but to hear it from someone with prestige in the field that we’re looking at with Jonah was strangely reassuring.
From what I gathered, he thinks he may have a unusual type of psoriasis on top of the eczema. There is also a good chance that Jonah has had a pretty consistent staph infection that presents non-traditionally for quite a while. He also suspected a few other types of things that I honestly have no idea what he was talking about. This guy is really, really smart and he is intrigued by Jonah, which is pretty much exactly what we’ve been praying for.
We are being sent over to one of the partner hospitals to see one of the dermatologists and one of the ENT’s since we’re still rinsing out grossness on top of the other issues since he already has known ENT problems. The dermatologist will most likely be doing some pretty extensive patch testing while we are there. We are also seeing nutrition as well at some point in the next few days to see if we can find any preservative that Jonah has eaten or come in contact with that would cause any of these issues.