Today was  whole lot of mentally and emotionally exhausting stuff. We did a lot of whole kid stuff with Jonah today and looked into how the chronic illness is affecting him as a little person. The long and short of it…he’s doing extremely well considering everything. He did art therapy, behavioral studies, and met with the child physchiatrist and did a bit of ADHD testing. Be shocked. ADHD is confirmed completely and without a doubt. He does have some fears and trepidation’s about his skin and the way others see him. He is big enough and mature enough to notice that he is different, but his responses in dealing with it are extremely appropriate and gracious. He’s amazing.payday loan

The child psychiatrist had some suggestions on maybe adding a medication for days when he needs to be hyper focused, but for the biggest part of things, he’s happy with the medication he’s on and with the low dose that our doctor has him on as well. He is also a holistic medicine practitioner and fully understands my desire to not overmedicate at all ever, but agreed that we were at a quality of life issue for Jonah before, especially considering that scratching is one of his fidgets and that is a problem for him.

One of the biggest questions that I have had and will continue to have is the effect of the divorce on Jonah and how he handles it. He in true Jonah fashion has handled that as well as could be hoped for as well. It’s been a lot of transition for him in the last 6 months with that too in his dad moving from across the street, and in Jen and Jase both getting added to his life in the same time period. He is secure in the fact that he is so so loved by all 4 of us and is also very aware of both his dads and my own giftings and shortcomings. This kid is wise beyond his years for sure.

Yesterday also included a Dexa scan to check on his bone density and verify that he doesn’t have any long term damage from high levels of steroid use (2 broken arms in a year tends to make you ask questions like that). I don’t anticipate anything more than him just being my kid and accident prone, but just in case…

Last night when we got back to the Ronald McDonald house, we were gifted some pretty fantastic tickets to the Nuggets basketball game. It was the first time either of us had been to an NBA game…and we might both be a little bit hooked (much to the delight of my favorite basketball fan). It was a late night, but a ton of fun. I’m definitely glad we went.

Today, Jonah and I will be participating in a research study, more skin care and wet wraps (he’s already looking SO much better) and final meetings with everyone. We will also get a new care plan for both school and home and future testing instructions.

So I knew that in all reality we’d have to come back. I wanted to believe that we had found a magic fix and eczema was a word I wouldn’t have to know so intimately ever again. I had big dreams that the disease this disease that is so hugely misunderstand because literally everyone knows someone with eczema…and almost all of them have it “really bad” with an itchy spot between both knees. The reality is that even when I don’t realize it… this disease runs our life. In the last 6 months, it has gotten progressively more present again. After a staph infection about a month ago, I realized it was definitely time to come see Jonah’s people. We haven’t been here in 4 years…and some things have changed…but some things have definitely stayed the same.

We got into Denver at 12:00 last night and by the time we got the rental car and got to Ronald Mcdonald…it was 1:00 am. We were in bed and asleep by 1:30 and back up at 7:00 to be at National Jewish by 8:00. It’s been a long long day with a short short night. When we got here, we met our PA who is working with the wonderful and amazing Dr. Lanser. Her name is Alex and she’s really good with Jonah. We sat down and met with she and Dr. Lanser (so so many hugs for him from Jonah) and made a game plan for the day. We had a full schedule with Allergy, Dermatology and Immunology all on board along with 2 sets of soak and seal wet wraps. I. Am. Exhausted.

Allergy ran new testing. We still get zero positives (that’s Jonah’s 10th set of negative allergy tests in case anyone was keeping track). Dermatology confirmed that we still have eczema and then we talked through some options regarding some immunosuppressants (no.), staying on topical steroids, possible UV therapy, and even a new drug that is in trial with kids right now, already approved for adults and teens, and having fantastic results. It’s CRAZY expensive though (27k/yr if insurance decides not to pick up the cost). Lots of options to work through in the next few days that offer some additional long term plans.

Immunology is where the magic happened today. Dr Gelfand managed to see Jonah and all of Jonah’s symptoms as a whole child instead of as individual symptoms. We are running a full immunology panel as well as a genetics profile tomorrow. He is also running a genetic panel on me. He thinks the genetics research that has happened in the last 4-5 years may be the key to helping us correlate all of Jonah’s symptoms into something specific. At this point, I had given up the idea of ever getting a diagnosis for Jonah and was happy with just getting a new treatment plan…at this point though…I am cautiously optimistic that a diagnosis may come…and with a diagnosis comes a cure.

We’re staying inpatient tonight for them to monitor Jonah’s sleep and get one more good solid wet wrap in for the day. We will be seeing all of the guys from today again tomorrow and will add a sleep specialist and pediatric behavioral health. It’s a crazy busy 4 days.

I kind of feel like I’ve left everyone hanging since we got home in October. To say that life is dramatically different is the understatement of a lifetime. We’ve gotten back to life as normal, but life looks so different then it used to for us.
When we got Jonah’s first 6 weeks report card and all of my friends were posting their kids report cards, I kind of wanted to crawl under a rock. Apparently Jonah had basically stopped halfway through his report card testing for the 6 weeks and refused to do anything else because he was itching so badly. It was bad. This 6 weeks he has fully mastered every skill he was evaluated on. His conduct was great and he was on green every day except one this 6 weeks (and even that was just a yellow) when before his conduct calendar was basically a rainbow. His teacher said he is exhibiting almost no ADHD tendencies where as before he was full of them. He’s still a super energetic 5 year old boy, but he’s normal, so we can relax when we take care of him we even play some games at the olympic kingsway casinos sometimes in this time as well.
His first Saturday back from NJH, he had a baseball game that he got 2 home runs during and made a few outs. He was a drastically different player. He had baseball tryouts last weekend and one of the coaches from another spring team last year looked at him as soon as he started and said that he remembered him from the Spring and he would draft him just because he had so much personality and then after his evaluation, he looked at me and said “Or because of that”. He is excelling at things he enjoys doing. He is reading. He is writing. He is hitting balls and running faster and things that we didn’t even realize were affected by the constant scratching are much easier now.
We have cut our doctors appointments in more then half. He has seen our primary care doctor once for a follow up from NJH, He has seen our ENT twice for an ear/sinus infection (with Jonah we always make sure it’s gone after he finishes meds) and he’s seen our allergist once. He has had one ER trip for flattened fingers in a door and we still see our chiropractor at least every other week (for him), but that’s SUCH an improvement. There were weeks before when we saw all of these men in a week. Those days are gone, I hope forever. We love all of them, but we’re glad to see less of them.
HAIR! Oh man does that kid have some hair now. We went to get it cut tonight and the girl cutting it looked at me and said “WOW! All of this hair must have come from you, Mom.” Jason and I just kind of looked at each other and smiled. There’s a first time for everything and that was the first time Jonah’s ever been accused of having a whole lotta hair.
Our chiropractor noticed last week when he adjusted him that he was locked up in a specific spot so he was probably about to flare up pretty significantly and sure enough he did. It’s amazing what they can tell just from his spine, but they’re always right, so I’ve given up arguing with them and just accepted that they’re smarter then me (we have a group of chiropractors that we see, hence the they). The adjustments calm down the inflammation in his body so much it’s crazy. They have explained to me multiple times exactly how it works, and I really should pay attention to why, but I’m just so glad that it does that I just kind of go with it.
Right now his face is flaring, but his ears are draining fluid, so I at least know where it’s coming from. Jonah doesn’t run fever ever, so his skin is really the best gauge of infection in his body. Luckily all of the men who take care of his medical business know when I call and say that I think he has an infection because his skin is flared and some other really strange really random reason, they know I’m not crazy and that I’m probably right so they go ahead and get him in. Hopefully this one resolves on its own with just the ear drops and an adjustment.
Our normal is still not others normal, but it’s so much closer. At this point Jonah goes between one and two skin care “sessions” a day depending on the severity of his eczema. He takes at least one 30 minute soak a day, sometimes two. Those are rough on school days because it means we start the bath at 5:40 to be out the door in time for school. He is then lathered up in the appropriate moisturizer and cream depending on how his skin looks. Then if he is flared up, we wet wrap the irritated area. It’s a process…but we have a process. Some days it’s just the bath and the moisturizer, but other days its a muuuuch longer process. Those nights when you come home and you’re tired and your kids are tired and you just throw them in bed…yeah that doesn’t happen ever, but the quality of life it gives him is so much better that we will keep on truckin with it for as long as necessary.
Jonah had almost 2 months without using a drop of steroid cream. That hasn’t happened since he was a month old. He hasn’t had a single dose of oral steroids since September and I’ve only had to call Dr. Perry (our allergist) twice-ish after hours. The constant snot drip that he’s had since birth makes it difficult to keep the space between his top lip and his nose clear, but it’s manageable. Winter is still proving to be a little difficult, but the before and after NJH are two different worlds. He has NO open wounds.  I’m hoping to actually start using this to keep up with the Life of Jonah outside of medical stuff since we have a whole lot more non-medical time then we did before :-).

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.