By Lynn Wellumson
These busy months of being in the U.S. are drawing to a close. After many visits to the doctor for the three of us we are grateful that Barb has achieved “stable” status. Her blood levels aren’t as high as they should be but they are holding steady at a level higher than they were. Thank you, Lord!
Megan graduated from Northwestern and she and Josh are married! Kirstie is set to begin Bible School with a job in the kitchen. Thank you for your prayers for them and for Rachel and Ben as they finish their studies at Patrick Henry College in Virginia. Now Barb and Todd return to Mexico as “empy-nesters.”
Blessings in Jesus,
Todd and Barb Schierkolk
What is juvenile arthritis?
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:
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 9th with an appointment on the 12th. 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!
Jeremy, Lacey and Malachi Crowell