Update on Malachi's arthritis

Friends, prayer needed!!  Last week Malachi had his eye appointment on Tuesday and they told us that he still had the eye inflammation (Uveitis) and it hadn't gotten much better. The Dr gave us another set of eye drops, that are stronger, to try for one more month; but told us that if they were not clear that we would need to go another route. (Right now he's on two sets of drops, which isn't good long term, and also methotrexate injections once a week.) The following day we had the rheumatologist visit which we thought would be a quick in and out. This is where we need your hard prayers! He suggested that we start Humira, the only FDA approved drug for Chrohns, Uveitis, arthritis, etc. The catch is that he would be on it until his eyes cleared, PLUS another one to two years. And it can be really expensive! And it's injecting him with drugs. His joints are doing great, which we are very thankful for, but we need wisdom regarding his eyes. Eyes are a pretty big deal!
The rheumy we saw was a different one we had last seen, so we called her to get a second opinion. Since the opthalmologic had said to come back in a month, we came to the decision that we would stick with what we are doing now and wait until the December 2nd appointment. PLEASE pray that they will clear by then! And feel free to share this.

Malachi’s Juvenile Arthritis Journey (thus far)

What is juvenile arthritis?

Juvenile arthritis is a disease in which there is inflammation (swelling) of the synovium in children aged 16 or younger. The synovium is the tissue that lines the inside of joints.

Juvenile arthritis is an autoimmune disease. That means the immune system, which normally protects the body from foreign substances, attacks the body instead. The disease is also idiopathic, which means that no exact cause is known. Researchers believe juvenile arthritis may be related to genetics, certain infections, and environmental triggers.

 Not all symptoms are shared by all children with the disease. Moreover, the symptoms of JIA can change from day to day.

The type Malachi has:

·         Oligoarthritis, also called pauciarticular juvenile rheumatoid arthritis, affects fewer than five joints in the first six months that the child has the disease. The joints most commonly affected are the knee, ankle, and wrist. Oligoarthritis can affect the eye, most often the iris. This is known as uveitis, iridocyclitis, or iritis. This type of arthritis is more common in girls than in boys, and many children will outgrow this disease by the time they become adults.

Back in February, Malachi was playing and hit his left knee on a metal bar on one of his kid’s chairs and his knee immediately swelled. He cried for a few minutes, but then didn’t complain about it. However, he limped on it and the swelling didn’t seem to go down. A week later, he and I were headed to Michigan to visit my parents.  While there we visited a walk-in clinic, who sent us to the local hospital, who finally sent us to a pediatric orthopedic surgeon. From what he could tell he thought it was a sprained MCL (ligament) and that it would heal up within a month, but if it didn’t we should get an MRI. Malachi was slightly limping, but not really complaining about pain. We were hopeful.

In March he was still limping, but because he seemed to be doing fairly well and the cost of travel is so expensive we held off for a bit.  In April, we were in Washington and were able to get an MRI at Seattle Children’s Hospital.  We called a month ahead to schedule an appointment and there was only one opening available for the time we were there. That was just for the initial “meet and greet appointment”! They were busy. We were very thankful that they could squeeze us in for a visit two days in a row since our schedule was to leave WA to head back home and we were running out of time!  He also was progressively getting worse and not wanting to use his hurt leg at all and was crawling around everywhere. The MRI showed the arthritis and we met with a Rheumatologist to see what the next step would be. (Again this was an answer to prayer since they squeezed us in.) We explained to them the cost of travel, especially the leg from King Salmon/Naknek to Anchorage which is normally $400+ per person. We told them that if possible, we would love to be able to continue things in Anchorage if it was needed. However, for certain reasons, they said we should come back down to Seattle.

In May, just a few short weeks later, Malachi and I went back down to Seattle for a week. We’re so thankful for a place to stay with family and people to visit with in between appointments. At Seattle Children’s he had steroid injections (while sedated thankfully!) into both knees which seemed to help a lot! They decided to do both knees as they thought he probably had some arthritis in both even though he only had an MRI on the one knee. He was doing really well and a few days later was finally walking just about normal which hadn’t been the case since February. Unfortunately, after we got home, to make things even crazier he fell on the hard floor and fractured a small part of his lower femur…on the same leg! We brought him to the local clinic here, but they have limited resources. So, ANOTHER trip the first week in June, this time thankfully just to Anchorage. God worked the timing out so well for that flight as Jeremy was flying the Cherokee 6, the AFLC’s six seater airplane in to pick up some of our summer team folks. Malachi and I were able to catch a ride rather than flying commercially, which is pretty crazy during the summer months.  Malachi got a cast on for 5 weeks. He was such a trooper with it on and rarely complained even with his lack of mobility. He sure is getting heavy to carry though! The beginning of July he got the cast off and began to get mobility back.

You would think the story would be over by now, but it’s not. It’s been such a whirlwind, so the days get kind of mashed together. Once we got home we enjoyed being able to do more things outside and I enjoyed not lugging him around everywhere! But wouldn’t you know that just a short time later he was walking/running around the coffee table and bumped his ankle. We don’t know if he was nervous or going through a sort of “PTSD”, but he immediately cried and it seemed to hurt him quite a bit. He refused to walk on it for a week and a half. Some x-rays showed nothing, so it may have been a sprain of some kind. We were curious if kids with arthritis tend to be more “fragile”, but it’s so different for every kid’s arthritis story that it’s hard to know. We are hoping and praying that he just keeps getting better and better and “mishaps” don’t happen quite so often.

In the beginning of August we again headed to Anchorage. There are two rheumatologists who come up from Seattle every two months. They are only there for three days, but it’s easiest to try to work with our schedules and go there when it’s just a follow-up appointment. We had three (with a surprised 4th) appointments while we were there. The first one was a follow-up with the orthopedic surgeon and it was all good news there, so we hope to never see him again. Haha. The second appointment was with the rheumatologist. We weren’t sure what to expect since Malachi had had two injuries since the injections back in May, so we thought that would change things. He still favored his left leg and when he did things like run, he had a bit of a hobble. Or if he would jump he would lean more on the right leg. Overall, that appointment went super! The Dr. we saw was one we had not met before, but she was very friendly and great with kids and made it fun for Malachi! And it was pretty short, which he is always a fan of. She said that his arthritis for now seems to be doing well. The inflammation was a lot less and it didn’t seem like there was any fluid build-up. When she had him put his legs straight his left leg was at a very slight angle, so she mentioned that she would like to see that completely straightened. This actually led to the surprise appointment with a physical therapist that we got to see 10 minutes after we left there and we just had to walk down the hall! And of course that’s all just fun stuff for kids, so Malachi would have played there all day if she would have let him. She was able to give us a few little exercises to do at home to work on his left leg. The last appointment was with the ophthalmologist. With the type of arthritis that he has, they very much encourage you to see an ophthalmologist every three months. As I included at the beginning, there are a small number of “cases” where they can have inflammation in the eyes. This is nothing that can be seen by just looking at the eyes and at the very beginning stages you wouldn’t have any idea they have it unless it’s with their fancy equipment at the appointment. If not treated, it can lead to serious problems, including blindness. So, what we are doing right now to treat it is that we had given him eye drops six times a day for two weeks, and are now on four times a day. We also have weekly injections that we do at home. Thankfully, it’s a tiny needle right in his thigh and he doesn’t feel a thing. Also, thank the Lord that there hasn’t been any side effects since common ones are fatigue and nausea. Please pray with us that his eyes will be clear of inflammation! Since the eye inflammation was discovered, we actually will be headed back in next weekend, September 9^th with an appointment on the 12^th. We also have a tentative mid-October follow-up with the rheumatologist. Goodness, we never in a million years we would be traveling in and out so much!! Malachi doesn’t mind because he gets to ride the elevators! Maybe he should start taking monetary tips for pressing the elevator buttons for people.

Last week he started Kindergarten and seems to be liking it! He has a very nice teacher and I think he is getting comfortable being there since he already got in trouble yesterday. He’s used to being the only child, so this will be good for him! They are also very understanding with the trips in and out, but they’re pretty used to that because of where we live. He is also doing well and we haven’t noticed any limping and he loves running!

Thank you so much for your prayers! Of course we’ve been concerned at times, but we are so thankful for how he has been doing so far! There are kids out there who have it far worse. Pray for a cure!

April                                              June after getting the cast on

    Now!

Flooring!

We got new flooring in the radio station apartments a few weeks ago! Thank you so much to the team who came up to do it!! And thank you to those who made it possible. Hugs! We love it. 

Painting Party

Our blog updates this time are a "little different". :-D I recently started writing articles for the facebook page of the WMF (Women's Group of our denomination) and below are a few of those; which also gives a good update from the last few months.

A few weeks ago we had a work team come up from North Dakota, and one from Fergus Falls (MN). Their goal was to get the new roofing put up on the South Naknek church, and hopefully be able to do some other projects that needed done. One of them was priming and painting a portion of the church as well as the steeple, but unfortunately the weather didn’t allow it.

So, this Monday, Jeff and Jane Swanson and our family flew over to get it done. If you Midwesterners think you have it bad with the mosquitoes you should come have fun with the “no-see-ums” when there’s no wind blowing! The first hour was horrible, but praise the Lord for bug nets to put over our heads!

As we were painting the church white, Pastor Jeff made the comment, “There’s nothing better than a brand new bucket of fresh, white paint.” Jeremy said, “It reminds me of a milkshake.” As I was painting the steeple (on the ground!), I began thinking about it some more. I thought, “Sure, it’s white initially, but right now as I’m looking in my bucket I am seeing a lot of tiny black dots.” As I was painting, there were hundreds of no-see-ums landing on the fresh coat of paint. Later on I began thinking a bit deeper about it, and I thought of sin... Isn’t sin just like that? Everything can seem well and good. We might have everything “just almost” put together. But what about those little black spots here and there? Even just the smallest thing can cause plenty of trouble! Just like those bugs! Boy, were they trouble!

Thankfully, as believers, our sin was washed as white as that pure, white paint!

‘“Come now, and let us reason together, says the Lord: though your sins are like scarlet, they shall be as white as snow; though they are red like crimson, they shall become like wool.” Isaiah 1:18 (ESV)

God and the Blueberries

When are times when you feel close to God? In church? While listening to worship music? Reading the Bible? Perhaps it’s something completely different. That was my experience this past week. Here in Naknek the blueberries are ready for picking. Malachi and I have been going out when we have the chance and the bugs aren’t in full force. One day while we were out picking, I was reminded how God was right there and He loves to provide for His children even in simple things as blueberries. Let me paint just a small picture of the Naknek way of picking berries.

All of the berries that grow here, grow right in the tundra. Tundra is everywhere. Where there isn’t gravel/dirt or grass, there is most likely tundra. Malachi and I went out in our “backyard” and tromped through our tall grass in the back to get to the tundra. Stepping onto it, it’s slightly spongy, lots of small plants and bumpy terrain. But it smells so good. Almost like different kinds of “herbs”, but hard to explain. In August, if the spring and summer weather was right, there are blueberries ready to be picked. They are all low to the ground and don’t grow on bigger bushes like the “lower 48”. They are also a little harder to find, because you have to get down lower since they sometimes hide and are a little smaller than “regular” blueberries. Most of the tundra plants are green, but they all look different and have different shades of green. It’s all beautiful, but the blue of the blueberries and the red of the cranberries that are starting to come (in a month or so) is pretty spectacular. For some reason, I felt like God was right there and I was thinking, “When people years ago depended on “living off the land”, they must have been so thankful. And I’m just excited to be able to eat these! Thank you God!”

Don’t even get my started on the colors of the tundra in the fall…Come on up and find out for yourself! :)

A Different Lifestyle

*This is the most current article*

Things are done a bit differently here in “the Bush”. We’re getting ready for a busy, exciting next couple of weeks. In fact, in just a few days we’re going to be having our “District” Youth Rally here in Naknek. I say “district”, because that’s a familiar term for us AFLC-ers, but maybe I should say Bristol Bay and Beyond Youth Retreat or something! :) Things are done a bit differently here. This Friday, if you are thinking of us, please pray for this retreat! Not only will we have about 30 kids from this area, but there will be several flights, using several different aircraft; flying to at least 5 villages. (Last year we had 80 youth; more than half of which were “non-locals”!) We have been so blessed the last few year with good weather for flying and even decent weather last year to have a beach bonfire. Please pray for good weather that weekend. Also, many of the youth who attend are not church goers and even some come from villages that are pretty closed off to Christians. There are many villages in AK that have a strong Russian Orthodox pull. Pray that the things they hear will “stick.” Pray for food planning and prep to go smoothly. Also, that God would give the chaperones/leaders the words to say and ways to reach out to them.

Immediately following the Retreat, our family heads down to Washington for a month. Jeremy and two Mission Aviation Training Academy (MATA) will be flying the Cherokee 6 from Anchorage to WA. Prayers for safety and smooth border crossing is appreciated. The Cherokee 6 engine will be getting an engine overhaul and other things worked on it. The engine will actually be sent to ND. Things are done a little differently here. 

Serving the Lord with gladness,

Crowells

Summer Greetings

Hello! 
We can't believe how fast these last two months have come and gone. This week all the commercial fishermen are done and cleaning up their fishing boats to store for the Winter. Hundreds of workers are flying back home. The season this year was late by a few weeks, so there was some anxiety when the fish weren't showing up. (possibly due to the 70 and 80 degree temps we had for a few weeks straight!) However, things picked up and for a few short weeks people were fishing long and hard. 
The very end of May brought our three person Vacation Bible School (VBS) team, which included Anja, and John and Hannah (Lee's son and Swanson's daughter). They were here to serve for 5 weeks in area villages as well as Naknek/King Salmon. Jeremy has had a good, busy time of flying this summer. Every Monday he was responsible for dropping the team off and picking them up on Friday. In addition to that, Mondays were busy with 4-6 hours of flying for a "local" Bible Camp in Port Alsworth. He still has a few more weeks left of that and then things seem to slow down a bit. 

                                                           VBS Team

                         
                                                    Naknek VBS during the Bible Story

Smack dab in the middle of June (the busiest time) we attended our church's Annual Conference in Washington. We went down a week ahead, so that we could have some time with family and friends. We were thankful that we were able to visit with so many and were able to jump around from Jeremy's mom and step-dads home, our best friends home and then on-site at Conference. Our time at Warm Beach for Conference was wonderful! It was so much fun to see so many friends and be able to reconnect for a couple days. Malachi was able to go to VBS in the mornings, so I got a little more visiting in. :)

                                                Jeremy with nephew Elliot

                                                     Lacey with Malachi and cousin Carter

                                           Lacey with Theresa and Anna at the Annual Conf.

                                           First ice cream truck experience with friends!

Jeremy and Malachi

                                                         Malachi with good friend Kinza

I don't have a big update on "The Net" as I didn't spend too much time there. Malachi is at a stage of a 4 year old and has a hard time listening these days....plus he's loud. :) So, we would stop by now and then for a quick visit. Bobbie, who was up here last year, headed it up again this Summer and did an amazing job. They were really busy for about a week or two straight, because all the cannery workers and fishermen arrived, but they had to wait for the fish. They definitely took advantage of the free coffee, cookies and internet. You wouldn't believe how many cookies she's baked in the 6 (?) weeks she's been here. There were also a few others who came up to help and we're thankful for them too! Jared Langness, a friend of ours from Bible School days came up to help/visit. 

Well, things are starting to slow down now. As I mentioned, fishing is done, which kind of halts the summer activity. There will still be things happening though. We have a small work team coming up the middle of August for a week to work on the South Naknek to fix the roof. Hopefully the weather will treat them nicely. It's been pretty rainy the last couple of weeks, but it is needed I guess. : ) There were a couple hundred wildfires in Alaska, even one kind of close to us. 
That's all for now! Thanks again for your prayers. Find us on facebook for more pictures.