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.