Philly Blitz with Noah

Noah Philly Blitz

Last month Noah (my almost ten year old) and I went on a weekend mission trip with our church’s children ministry to Philadelphia with the Philadelphia Project. It was a pretty amazing weekend; the age group was third through fifth grade, which was a first for me. Noah was really excited for the trip and even with his broken arm never held back from jumping in and working.

We spent the weekend in a combination of great worship times put together by Philadelphia Project, education about inner city Philly, and serving on various work sites. Noah and I were were with a group working to gut a room so that future groups could come in and do the actual remodeling. Which meant we spent the day scraping, pulling down a ceiling, cleaning, and generating a lot of dust. It was pretty impressive to see what a group of nine to eleven year olds can accomplish when they’re given the opportunity!

All in all, it was a great trip. It was fun to build some memories with Noah as well. Out of my four sons, the only one left who hasn’t gone on a mission trip with me yet is Zachary! But we’ll let him get a little older, first …

Because Skateboards

Caleb

Caleb tried something out on his skateboard. Awesome is worth the risk. His brothers all think he’s ‘a real man now.’ Sheesh!

Life with four boys!

No, it’s not broken. It is sprained pretty bad, and the bruising is around his growth plate, so the doctor wanted him in a splint out of precaution. He should heal up pretty quickly.

And he was already out trying something on his bike within an hour of getting home from the ER.

The Latest on Noah

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It’s been a while since I have posted an update on Noah and his battle with Localized Scleroderma. You can read some of the past updates here. The short recap is that he originally began showing symptoms of Scleroderma attacking the skin on his face around two years old, but doctors were unable to discover the diagnosis until he was four years old. He is nine years old now, has had numerous surgical procedures, powerful medications, regular blood work, multiple biopsies, and more. He is a TOUGH kid who has gone through a lot!

This past week we had his latest appointment with his primary doctor. It was good news. Essentially, Localized Scleroderma tends to attack a region of the body for around eight years. He will have it for life – there is no cure, but it’s attacks, or flare-ups, will be unpredictable and sporadic. The one we have been fighting has been on his face, and the goal of the medications was simply to halt the progress and hold it at bay until it had run its course, which the doctor is hopeful is this year. It appears to have stopped its activity; perhaps because the medicine is doing really well, perhaps because the attack is wrapping up. Either way, around Christmas the goal is to begin easing him off the medication with the hope that it will continue to be inactive! This is GOOD news.

It doesn’t mean it’s over, however. Noah will continue to have regular doctor’s appointments – both to monitor where it has been active to make sure it is truly done attacking his face, as well as to monitor potential flare-ups elsewhere on his body, at which point another eight year struggle of medications, blood work, biopsies would begin again. When he is older, as well, he will be able to have plastic surgery to undo the scarring Scleroderma has left on his face.

Ultimately, though, this is exciting. When we were told so many years ago that this was going to be an eight year battle most likely, that felt so far off in the future. Pinning him down for his first round of blood work was a nightmare and I remember thinking with horror that this was going to be our lives every few weeks for endless years. Noah quickly learned to handle the challenges, often times doing far better than kids much older than him at the hospital. He is resilient! And like us, he is excited at the thought that we are only months away from perhaps ending the medication and blood work!

The First Grade Gift

Every year the first grade Sunday School class collects an offering to benefit student missions – I’ve been meaning to post this for a while now! This past spring they raised over a hundred dollars, came over to the student hour on Sunday morning, gifted it to the Costa Rica team and recited their memory verse on missions! It was a very cool morning; and fun for me because the signature from Noah on the above card they made for the family in Costa Rica our team was building a home for is MY Noah!

First Semester of Seminary Finished!

Well, I finished my first semester of seminary Sunday night. I learned a few things along the way … and I’m not talking about class content …

  • I’ve been out of school for 13 years. Going back was overwhelming, scary, and challenging! It definitely took a month or so to really start to feel like I was getting back in the range of student mode.
  • I learned some valuable lessons about scheduling classes. I accidentally scheduled too many at the same time which made for an insane four week period of time when all of my classes overlapped. I actually registered for more classes next semester than this one, but I balanced them better so I won’t have that kind of nightmare again!
  • In a bizarre twist, I think I’m a better student than I was in the late 90’s. Back then I did what I needed to get the grade I had to have; now I’m working harder and offended when I don’t get the grade I know I could have gotten. Weird!
  • Technology has REALLY made being a student easier! Text books are cheaper digitally, and easier to highlight and retrieve information from. Doing work from my laptop in my office, iPad here and there, and iPhone on the go has made getting stuff down in spare moments a GREAT use of time.

Being a student is strange. I’m working towards a Master of Divinity (finally). Going at a full time pace (fall semester, spring semester, summer semester), I will finish a few weeks before my oldest starts his freshman year in high school (also known as August, 2016). I’m really motivated by that milestone – once we have kids in high school and middle school, life is going to be a lot more chaotic and will continue to be so until our youngest graduates (June, 2027). It makes for a busy few years, but I think it will be a lot harder as our kids get older, so here goes!

On the plus side, I do have the next month or so off. Sweeeeeeeeeeeeeeeet.

The year that was, the year that is

Calendar

Last year was a strange year. Actually, it was a hard year. Because of the economy, our church had to make some painful decisions and let some of our staff go. We had tried salary cuts, but it just wasn’t enough to resolve the challenges. The buildup to the layoffs was stressful to say the least, and it was doubly hard when it happened – one of those let go was probably the guy I was closest to on staff. Meanwhile, there were some really painful things going on in my extended family. And on top of that, Noah’s struggles with localized scleroderma took a turn for the worse for a while. He’s in a better place now, but for a while there it was scarier than it had been before. Thankfully, we have a lot of caring friends who really prayed hard for him.

To say the least, it all took the wind out of my sails.

Looking back, I don’t think I realized at the time just how much it was all impacting me. It should have been obvious, but apparently I’m clueless when it comes to self evaluation! But it does explain the lack of blogging … I just wasn’t in a place to write about any of it.

So that’s the year that was. But now I’m in the year that is.

It’s amazing how much can change from one year to the next. Noah’s disease is stabilized for the time being. Things are moving in a healthy direction in our church now that the budget fears have been dealt with. I’m genuinely excited about the direction our student ministry and church as a whole is headed.

On a personal note, I finally saw one of my dream goals come to be … my book was published and released just a few weeks ago (it’s actually on sale this weekend – you can get it and ton of other great books for just $1.99 each)! And I’m tackling something I’ve been wanting to do for more than a decade – and terrified to take on; I’ve gone back to school. Finally going for that Master of Divinity. If I really hit it hard, I could be finished when Micah is a freshman in highschool (three and a half years). It feels good to see goals being achieved in ministry and in life.

So all that to say … I feel like writing again. I’ve been quiet on this blog for too long!

Noah and Scleroderma

Noah's selfieIt’s been a while since I’ve posted an update on Noah and his battle with Scleroderma. You can find my previous posts/updates here. It’s starting to feel like we go through spells of very little to report … and then get slammed with waves of challenges. At the moment, it feels like a bit of a wave.

We’re currently easing Noah down to a much smaller dose of steroids. This is good as the side effects are frustrating for Noah. He gets teased for being chubby by other kids even though it’s really just a reaction from his boy to the steroids. Unfortunately, over the last few years, the steroids have been the only truly effective response to the Scleroderma.

At the same time, we’re increasing his dosage of Cellcept. The hope is that this will work in holding back the progression of the disease, but it will take time to find out.

Last Friday we spent the day at the hospital getting an MRI for Noah. Because of his age, this meant he had to be knocked out for the duration, so it wasn’t the most enjoyable experience for him – but he’s a trooper! The picture to the right is him playing with my phone and taking selfies after he woke up! Originally, the purpose of the MRI was to get a closer look at what’s happening under the skin at his face and brain, mostly as a precaution to see just how deep the disease is impacting him below the skin, but also to see if there is any connection at all with headaches he’s been complaining of the last few months. But then …

In either a demonstration of great timing … or just the pattern of things surging at the same time, the week of the MRI Noah had an appointment with the dentist where they discovered the tissue in his gums had deteriorated along the path of the Scleroderma to the point of causing one tooth to recede dangerously, as well as impact a couple other teeth as well. No matter what he’s going to have to have oral surgery at some point in the next month or so to correct it. The timing of the MRI was really good because they were able to really take a closer look at that region of his face to see if it’s a coincidence that he has something going on there (highly doubtful), or if it’s the Scleroderma, and if so, examine just how deep the impact is.

On top of everything else, Noah has to start meeting with the plastic surgeon annually so he can track Noah’s growth and the development of his face. As he grows, the scarring around his nose and eyes will look more and more pronounced. By starting the tracking now, it will give the plastic surgeon more to work with once Noah is old enough (probably around 16) .

Pray for Noah! The next couple months will probably be difficult with him; the oral surgery will be a painful experience for him to recover from, and the increased doctor’s visits are not on his list of favorite things to do!

An update on Noah

It has been a LONG time since I’ve given any updates on Noah and his scleroderma, mostly because there hasn’t been much to report. Towards the beginning of the year we had to make the switch from methotrexate to celcept to treat it. It’s frustrating, because neither drug is actually designed for his disease – they’re for organ transplant recipients to protect against rejecting new organs. However, the limited success they’ve found over the years in holding off the progression (there’s no cure) of scleroderma has been in large doses of these drugs. Unfortunately, the size of the dose carries with it potentially severe side effects, which Noah began suffering from with the methotrexate (the preferred treatment for the time being). Massive headaches, constant nausea and ultimately, a liver in the red zone forced the doctors to pull Noah off of it. It was disappointing especially given that he was only at a fraction of the dose he needed to be at.

He was switched to cepcept and steroids, with the hope that the steroids would jumpstart the process and undo the amount of inflammation he was experiencing. Unfortunately, while the steroid did seem to succeed in that, the side effect was a lot of swelling, especially in the face, which meant he started getting teased about being fat and chubby. Over the last few months we’ve been dialing back the steroid dose which has been good since the puffiness has also largely gone away.

We’re also about to start increasing the dose of the celcept. The doctors are glad to see the inflammation reduced, but it’s still not to the point where we would want it. Heather and I had been concerned because we were noticing a lot of blueness/darkness appearing around his nose and eye and feared the scleroderma, but according to the doctor it’s due to the thinning of his skin (related to the disease, but not as scary as the inflammation which is the first step in serious degradation and scarring) and being able to see the blood vessels below the skin.

Ultimately, he hopes to get Noah back on the methotrexate injections. The real goal is to get him through the next 5-6 years without much progression and it will hopefully have gone away by then. He won’t be cured, and it could/will pop up in other places on his body, but it will have hopefully have moved on from his face by that point. Noah is generally in good spirits, although lately he’s been complaining more and more about having to take the medicine. He’s a trooper, but after several years now, he’s getting tired of it and wants to be done. The last couple weeks we’ve caught him fibbing to Heather and I when it’s time for his medicine – he’ll tell me that Heather already gave it to him, or tell her I already did.

Anyway, overall he’s doing good at the moment, but still not where we want him to be. Thanks for all the prayers!

 

Biscuit’s getting big!

So, when we originally got a bearded dragon lizard, it was because Heather wanted one for years and I finally caved.

Now I’m a total beardie junkie. They are very, very cool … and a lot of fun!

Biscuit is a little over four months old and is just over 13 inches long already. The little critter is growing fast – he’s definitely living up to the German Giant in him (his breed of bearded dragon). It’s still questionable at this point, but I’m pretty sure he’s a boy. I’m getting more and more inclined to find a female and breed the two of them – I think it would be a lot of fun and educational for the boys. A bearded dragon can have around 30 babies at a time, so we’d definitely have a ton of little guys for a while!

At his size, he actually eats a lot now. I was doing the math and realized we would be spending about $60 a month on live food for him (crickets, dubia roaches, etc), or $720 a year! So we made the switch … and I started a dubia roach colony (not American roaches). They’re actually far better than crickets for a variety of reasons (no bacteria, don’t smell, no noise, easy to breed and care for, die if they escape because of our climate). We actually think Pebbles (our previous bearded dragon) died from bacteria he was infected with from crickets (they can carry a ton it turns out, they smell, and make too much noise – I hated them). So basically, now I have a bunch of roaches reproducing like crazy in a controlled environment providing all the live food Biscuit needs. In fact, we’ll eventually have enough to care for several beardies, which would be fun. I know it sounds gross, but it’s not nearly as bad as it sounds! I think Heather’s fine with it mostly because of the money we’re saving and because she NEVER has to go near the colony!

Anyway, he’s a fun pet and definitely full of personality. He’s constantly interacting with the boys, exploring everywhere when we let him out, and really good with people. r