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.

Today was a lot more of the same from yesterday.

    We are confident now that he is allergic to Desonide (one of the major steroid creams used for “sensitive areas” and for mild/moderate outbreaks. We will be meeting with one of the research skin doctors tomorrow to get his thoughts on Jonah. He has proven himself to be a puzzle at every new layer they uncover.
We also met with a sleep specialist today who is as confident as she can be without a full sleep study that Jonah has sleep apnea. They are trying to get him into a sleep study at the neighboring children’s hospital while we are here. If they are unable to schedule it, there is a specialist in Houston that trained at National Jewish who we will schedule with when we get back. He is also having night terrors on top of that, which luckily he has no recollection of at all.

     The rest of Jonah’s skin testing came back negative…like always. They did blood tests this morning. It was disastrous, but Jonah recovered pretty quickly with a few stickers. We should get most of those back tomorrow. I’m honestly not even sure what they were testing for. I’m sure they were vitamin deficiencies and immune system irregularities.

 

We are also running into a little bit of an issue with the baths (other then the total meltdown he had about the first two today). Jonah needs to have his ears submerged because of the cracks in his ears, but it is causing fluid to accumulate in his ears and drain out with just a little bit left after each bath. We are praying that this doesn’t turn into an infection. He is getting to be basically a professional with the wet wraps and his skin is already way way softer then it was when we got here after only 2 days.

So after an EXTREMELY long day yesterday (up at 5 am…went to bed at 12 am in a different time zone) I was definitely not appreciating the internal alarm clock that went off at 5:45. We checked into National Jewish at 8:30 this morning and did a tour of the unit, met our staff and got acquainted with procedures here and that sort of thing.

We have seen 2 specialists already and will see at least one more tomorrow. I really like our primary doctor. He and Jonah have made fast friends and he seems to get the frustration that we’ve had. They ordered skin testing and did half today and half tomorrow. Everything came up negative, just like always.

The only definitive from today is that Jonah has asthma. It’s not bad enough to really require any intervention at all at this point, but it does need to be monitored. Jonah had his first official NJH wet wrap. He did not appreciate the face wrap or wet pajamas at all. After they wrapped him up, we went and found a playground where Jonah had a chance to unwind and run some.

They will be running labs first thing in the morning, so they can minimize the number of times they have to stick him. He also got to go to art therapy today where he got to draw an island and take all of the things that make him happy and healthy. He took his vitamins, creams, hearts, his family, Mr. Brian (our chiropractor) and Dr. Perry (who was riding a horse???). He also made sure there was a playground there. He loved meeting other “itchy kids” Tomorrow is a day of more skin tests and labs. There are only 4 other kids here so he’s getting lots and lots of attention.

 

Also tonight we are noticing a reaction to one of the steroid creams and we remember why we had stopped that one. We will try it one more time tonight and see if it reacts again. If it does that cuts out one of the major medications out of our repertoire.