Steroid Injections

When we woke up the morning of Oliver's steroid knee injections we set the alarm to wake us up at 6am. We woke Oliver up and fed him a big breakfast, let him play and then at 7:30 (15 minutes before he had to stop eating for the day) fed him another large snack.We had prepared ourselves for a rough day since Oliver LOVEs to eat. I went into work at 9am for a little while and took Liam so Danny could focus on Oliver. Liam and I got home around 10:30 and Oliver was doing surprisingly well! We didn't eat around him and he loved the apple juice he was allowed to have and doesn't drink on a normal day. Anyway, we had to be at Children's Hospital no later than 2pm for his procedure at 3:45.We left around 12:30 to drop Liam off at a friends' house and arrived at the hospital around 1:30pm. We checked in and walked around the hospital. It's a truly beautiful and fun hospital, they did a great job of making every aspect of it fun for the kids. Oliver enjoyed walking around and playing and looking. A friend of our came by to say hi since he was working in the area which was fun too! When they called us back around 3pm we headed to the surgical prep area where they went over paperwork and we met the rheumatologist and the anesthesiologist. Things were running behind so we waited a long time. The anesthesiologist met with us and explained that because Oliver was a preemie and had under developed lungs she was going to start an IV to make sure everything was safe. Anyways, around 4:15 they took us back into the surgical room and had us lay Oliver on the bed. He was fine laying down since Danny and I were still with him. Then they put the mask above his face with some laughing gas, he didn't like that though usually it helps them relax enough to put the mask all the way on their faces. Not Ollie, he freaked so instead they turned on the anesthesia and put it on his face so shorten the process and not make him wait. After about 15 seconds of screaming he was asleep and they walked us out. It brings me to tears even now! We waited in the lobby and around 4:45 the doctor called us and said the procedure went fine and they would be out to get us soon. Praise God! The doctor came out a few minutes later and said "He is waking up very upset and doesn't want his pacifier so we need you guys to go in now, they are giving him some pain meds to calm him, and help the pain" of course you don't want to hear that. When we got back there he was calm and starting to wake up again. We held him, but he woke up super upset again and when the nurse took his IV out he pulled the band aid off and blood went everywhere, but she was able to stop it and Danny walked him around to calm him. We were then released and went home. We were told to keep the two little bandages on his knees for 24 hours. His knees were almost twice as swollen as they had been but that is normal for right after the procedure. On Friday we finally saw some improvement and no limping! Friday night (steroids are known to cause insomnia) Oliver slept off and on 45 minutes ALL night due to insomnia....pretty horrible for an almost 2 year old. But each night got better and now he's sleeping great again. As of today he is still not limping and his knees still look great! We are so excited and so thankful that God is in control! Thank you to all of you who have been praying and loving us!

One prayer request we have-last night after bath time I noticed Oliver's right hip seemed bigger (I think I am SUPER sensitive to anything now) than his left so I took pictures and asked a couple people who also said yes. We checked again today and yes, his right hip is swollen but we are going to give it a few days......maybe its from something other than arthritis? He doesn't seemed bothered by it which can still happen with JIA. This is hard news as we thought his knees were it. The doctor did tell us originally kids with just a couple joints affected (oligoarthritis) can have other joints join in for about 6 months after the onset. Please pray for Oliver and us as this is really hard!

Thank you for praying we LOVE you guys!

Chugging Along...Slowly but Joyfully

        We had some issues with a nurse after calling and telling her, on Monday like they asked us to, that Oliver's legs were really bad being off his medications. She said, lets start the meds again wait until after your trip (we were leaving on Friday for 10 days) and we will see how he does. We were really upset. It had been almost 7 weeks and we had done everything the doctor asked us to do. Hearing"wait" again while Oliver is in pain and we were leaving on vacation for a long time did not give us any confidence in the doctor. I kept feeling God's push to call back and request a call from the doctor. I called back and asked to receive a call from her and the nurse told me it would be a few days. I was not ok with this, and after feeling that push again I called the administration and told them the story. She apologized and said she would have the doctor call me right away. She called shortly after and said she did want to get things rolling since he was doing so poorly. She opened up a day she doesn't see patients and got us in two days later on Wednesday. 

      She said because he still wasn't doing well, no improvement, she does agree that he has Juvenile Idiopathic Arthritis. She talked, explained, and taught us for 90 minutes, going over different treatment possibilities and explaining exactly what is happening in Oliver's body. In case there are other people reading this wondering what the options for treatment are I am going to list them. These are the starter treatments, there are a lot of options for treatments if these don't work but those are a bit scary.

1. Oral steroids to get this "flare" under control-lots of yucky side effects and only short term to maybe get his body back on track and he would stay on the pain meds. Once we take him off of these the flare could come right back and staying on steroids long term is not good for anyone.

2. Steroid injections- They would put him under anesthesia at the hospital (which is a bit scary)and inject steroids directly into his knee joints. This has very very low amount of side effects if any, stays in the joint and doesn't affect the rest of his body functions. The doctor has seen kids feel and look much better after just 24-48 hours after. Some get relief for almost a year but the average is 4-7 months. Though, she has had kids that don't get any relief from these, but that is few and far between. 

       We decided to start with the injections, as these are the least invasive to Oliver's body. She agreed and said she would recommend starting with the injections. If they don't work as long (only 0-3 months) they would do another set of injections and if he ended up needing it more than 3-4 times a year they would go a different treatment route. We can talk about those if they come.

      We had Oliver's injections scheduled for Monday the 28th of March at 8:30am. He can't eat for 8 hours before which was fine since it was over night. On the Thursday before his procedure was scheduled for I received a call from an admin lady that said she had put the paperwork in incorrectly and the authorization would not be ready by Monday. Of course we were bummed but what can we do? I'm learning that getting upset doesn't change anything. So, long story short, they were able to get him in with a different department, Interventional Radiology, tomorrow. We are so glad we can hopefully get some relief for him.

    We would LOVE more prayer for tomorrow as Oliver LOVES food more than most kids and can't eat after 8am. His appointment is at 3:45ish and we will get to the hospital around 2. I have been praying that God would miraculously cause Oliver not to be hungry...he gets very upset if he doesn't get to eat. Prayer for safety as he is under anesthesia and wisdom, and guidance for the doctor. Peace for Danny and I and sweet intimacy with God while we wait for Oliver to be awake.

What's Next?

           After the fevers we called the doctor on Monday because the Naproxen was not helping anymore, and I was concerned about the fevers. He called back and said we could try Meloxicam which is a different anti inflammatory. Around Thursday the Meloxicam wasn't working very well either so I called Friday morning to find out if there was anything else for him, as he was miserable.  The pediatrician called back at 5pm on Friday and said he spoke with the rheumatologist and she wanted us to race to the lab and get more bloodwork done before they closed at 6pm. She was concerned it could be something else due to the quick progression of pain and symptoms. We got that done and the pediatrician called Saturday morning to tell us the viruses they tested him for would not be back until next week but some of the more serious things came back negative. His inflammatory marker had gone down but his other one had shot up pretty high. He was ok with waiting until Tuesday when we had the appointment with the rheumatologist, and to just keep the Naproxen and Tylenol going.

        Monday Ollie seemed a little better and Tuesday he was doing better than we had seen since the start. We arrived at Children's Hospital and went into our appointment. Basically, the doctor saw him running around the exam room, playing, being silly with seemingly no swelling in his knee. We were pretty shocked but happy for the sudden healing. Because he was doing so well her thought was that it could be getting better and this was the tail end of some kind of Reactive Arthritis (when your body responds to some kind of known or unknown virus by inflaming the joints but goes away after 5-6 weeks), She wanted us to wait one more week, to make it a full 6 weeks since the start of these symptoms, and then take him completely off the Naproxen and see if it comes back or not. That week leading up to us stopping was so great! He was running and playing and the happiest we've seen him in a long time. We were so excited that this might mean he just had reactive arthritis.

     Monday morning we gave him his last dose of Naproxen. Tuesday he did great! Wednesday he was a tad stiff but still happy and not limping or swollen. When he woke up from his nap he was limping lightly but we were hoping this might be the residual from the reactive arthritis? Thursday morning he was doing great again and after nap time he was ok until about 4:30 when the limping started again, so i called rheumatology. I talked to the rheumatology nurse who spoke with Dr. Moore (Oliver's rheumatologist) and she said lets watch him over the weekend, keeping a journal of when and how bad he gets because she also thought maybe he's either on the tail end or it is coming back. Today he was limping and fussy in the morning and it was off and on until nap time. When he woke up it was swollen and he was limping really bad again. She said not to give him the Naproxen unless he has two really bad days.

      To be completely honest I really thought this would fizzle out and be over. Though deep inside me I heard God's voice telling me not to let it go. Its frustrating and upsetting. We've gotten so used to him limping and being fussy that a friend of mine actually had to remind me that limping is NOT normal. Especially in a one year old. Thinking now that this really could be a chronic disease that he has to deal with, and the yucky treatments is overwhelming and makes me mad. I haven't been mad at all until the last few days. Just extremely emotional.

     I know you all know I am a Christian, and have a deep and meaningful personal relationship with God. I am mad that in this world there is pain and sickness and sin. But STILL God is my God and my strength through this. He created the universe and the tiny atoms that make it, and everything up. He created Oliver and knows him better than we ever will and loves Him more than Danny and I could ever love him. My trust is in Him. To have a foundation that I know I can stand on, or, when I need to fall down onto, I can and He will never leave is so comforting. Please battle with us in prayer for Oliver!

The Waiting is Hard

I thought I'd keep notes on how things are going while we wait to see the rheumatologist on February 23rd.
Oliver saw the eye doctor who gave his eyes a clean bill of health, praise God!!!

A couple days after we found out about this possible diagnosis (Wednesday), Oliver started limping on his right leg too. At first we thought it was just because he was over compensating but the next day both knees were very swollen. On Friday Oliver woke up in a ton of pain and wouldn't walk at all even though we were giving his Naproxen as directed. I called his pediatrician who said to give Tylenol too when he seems to need it and the Naproxen isn't due yet. She asked if he had any redness or fevers and I told her nope. We did the Tylenol along with his Naproxen and for the next couple days it did seem to help. On the following Wednesday he had a GREAT day with hardly any fussiness and walked on his own (though he still limps). I decided to try not giving the Naproxen the next day to see how he would do (don't do this...bad idea) and he did well until after nap time when he was in a lot of pain so I gave him his dose and haven't skipped a dose since.

On Saturday it was beautiful here in Colorado, 61 degrees and sunny so we went outside as a family and played in the sunshine with neighbors, bikes, scooters and chalk. Oliver did great, was happy (still limped) but had fun! We went in around 11:30 to get ready for lunch and the boys sat on the couch and relaxed and watched TV. I went and sat down with them and held Oliver and he felt exceptionally warm. He also looked terrible, tired, and out of it. I took his temperature and it was 102.6! We were shocked as he was just outside playing and feeling good. After lunch (he hardly ate) I gave him Tylenol and it brought down the fever to 100.6. After bath time I put them down for bed and around 10pm I went in to fell him and make sure he wasn't hot, which he felt fine. He woke up today without a fever and doing well. (With swelling in both legs) We decided, since no fevers, or symptoms of illness were present we would go to church. After, we picked Oliver up from the nursery and they said he seemed tired. We got home and he was burning up again! This time his temp was at 103.6 and I was really concerned. He wouldn't nap and just played lethargically and sickly looking on the bed next to me. I gave him tylenol and after one hour his fever was at 100.8. After 3 hours his fever was gone and he was up playing with Liam again. Super strange and concerning. I have emailed the pediatrician because she told me to let her know if anything else develops. Things are developing so quickly that we are hoping to get in sooner to see the rheumatologist. Ill update tomorrow with what the pediatrician has to say.

Overwhelmed but Not Overtaken

        I don't know where to start. I am sitting at our computer, listening to worship and praying God would help. That He would stop this. That He would heal my sweet little man. With tears running down my face into a puddle on my shirt I plead with Him, that His will would be done, but that He would uphold me with His strength.

       I should start by telling you what is going on. On January 20th Oliver, who is 20 months old, started limping. As a mom of two boys my husband, Daniel, and I both thought they were probably rough housing and he hurt it that way. We gave it a couple of days and then went in on the 22nd (my oldest sons 4th birthday). The pediatrician did X-rays and saw no bone injury, just some inflammation. He thought it was toxic synovitis-a "cold virus that traveled down to his knee" which goes away on its own in a week or tow. Every morning Oliver wakes up and won't put any pressure on his left leg and his left knee is very swollen, he wants to be held, but after a few hours he walks but with a limp. It seems to get better as the day goes on, then a little worse when he wakes up from nap time.

      Well, two weeks later on Monday, February 1st, Oliver woke up and it was much more swollen than we had seen. I called and talked with one of the pediatricians who was concerned that it was worse. She recommended we come in for blood work and more X-rays. I was perturbed, blood work on a one year old is extremely traumatic and I thought this was probably just a sprain. Danny was the one who pushed and said we were gonna take him and do the blood work. We went in and the doctor ordered the two tests. She called later that day with some shocking news. She said his X-ray looked identical to the first one-she expected some progress in healing, and his blood work showed elevated inflammation markers. She then mentioned she had called a Rheumatologist at Children's Hospital and discussed Oliver's symptoms, and all his test results. The rheumatologist told the pediatrician it sounds identical to Rheumatoid Arthritis (Juvenile Idiopathic Arthritis). I was SHOCKED. Speechless. She said that because he was in pain even with Ibuprofen they would write a script for prescription strength Naproxen (like Aleve). She also wanted him to have an eye exam to make sure he didn't have Uveitis.....an eye issue kids with JIA can get. All of this was overly overwhelming. Wait...my one year old has an auto-immune disease? Sick to my stomach.

    As of now we are actually going for his eye appointment today. We are waiting to hear from Children's Hospital about his rheumatology appointment, we should hear by tomorrow.  As far as the next step, it will be meeting with the Rheumatologist and testing Oliver for some other things to rule them out before officially diagnosing him.

This is going to be really raw. Please bear with me.

My thoughts from my heart and my prayer to my sovereign God:
Lord, seriously? Really? We JUST got Liam settled into a new routine of shots and seeing progress. We finally got most of the medical bills paid. We were in a good place. We were on a good schedule. I just started school. Our plans were going as planned. Why? Why does my tiny, sweet boy have to be in pain? Go through testing and poking and taking medicine we have to shove in his mouth that he hates?

I am still dealing with these questions but through prayer from others and myself and reading His promises He has shown me so much. I read an article and was extremely encouraging here is the quote:

"As we trust God with the things in life that we may never understand, we are transformed. We may never know why we are going through trials. But we can take comfort in knowing there is always a reason for our suffering — 10,000 reasons. Reasons that are bigger and more magnificent than anything we can imagine.

One day our faith will be as sight, and we will see all of God’s glorious purposes in our trials. But for now, as we wait, we must trust him.

There is always a “why” to our pain. We may never understand it in this life, but this we can know: As we surrender our questions to him, God will answer us with nothing less than himself."

I am struggling through why this is happening but slowly He is revealing that He knows, He is sovereign, and He loves us. I don't understand but that is ok, because He knows and He commands the sea, and every cell in our bodies. This was not a shock to God, in fact He is in control of it. He upholds us, and always will. I want to see more of Jesus through this, and that's what I want for everyone that is reading this. Please pray for healing for Oliver, but if that's not God's will pray that Oliver will see Christ in his suffering, that this trial might bring Oliver, and many other people, to a saving knowledge of Jesus.